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Celiac Chat

On March 18, 2003, Sonia Cooper, president of the Children with Diabetes Foundation, hosted a chat about Celiac Disease.

Moderator   (server) Tue Mar 18 08:00:00 PM EST 2003
Our chat about Celiac starts at 9pm Eastern.


seanster dx'd at 20 type 1  (67.241.57.105) Tue Mar 18 08:32:52 PM EST 2003
 Eek 

*brooke*   (205.188.209.101) Tue Mar 18 08:36:29 PM EST 2003
dx'd at 10 type 1

Kathleen Christopher, 8, celic dx'd last summer, diabetes for 2 years  (205.188.209.101) Tue Mar 18 08:46:51 PM EST 2003
hello

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 08:48:21 PM EST 2003
hello

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 08:49:52 PM EST 2003
has Westin had an endoscopy yet?

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 08:50:30 PM EST 2003
hello

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 08:51:04 PM EST 2003
nope, we saw a specialist, but he said that he wasn't opposed to not taking it any farther at this time...that is kind of why I am here, tonight...I want to know if waiting is a good idea?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 08:53:45 PM EST 2003
really? maybe his number was only a soft positive, did you see a GI?

Jennifer Mom of Ciara, 8, dx'd at 7  (64.170.116.195) Tue Mar 18 08:54:34 PM EST 2003
hello everyone..

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 08:54:39 PM EST 2003
Chris was asymptomatic, they do it as a rountine part of the diabetes scrrenings at our clinic...with cholesteral, etc

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 08:55:12 PM EST 2003
good evening everyone

Jennifer Mom of Ciara, 8, dx'd at 7  (64.170.116.195) Tue Mar 18 08:55:27 PM EST 2003
good evening Jeff!

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 08:55:37 PM EST 2003
good evening

Jennifer Mom of Ciara, 8, dx'd at 7  (64.170.116.195) Tue Mar 18 08:56:26 PM EST 2003
Hi Sheila P. was Ashli diagnosed for both at the same time?

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 08:56:27 PM EST 2003
Sonia's having some trouble connecting ... could be the big snowstorm they're having now -- several feet of snow.

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 08:57:13 PM EST 2003
we saw a gastroentrologist(?) sorry, I can hardly pronounce it!!! Razz 

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 08:57:26 PM EST 2003
Hi everyone Smile 

Jennifer Mom of Ciara, 8, dx'd at 7  (64.170.116.195) Tue Mar 18 08:57:52 PM EST 2003
Hi Laura

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 08:57:56 PM EST 2003
Westin was also tested as routine in the clinic...he was one of four to test positive

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 08:58:04 PM EST 2003
Actually we saw the endo on a friday and they called on monday to let us know about the celiac

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 08:58:15 PM EST 2003
yes, thats a GI...we see one too

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 08:58:20 PM EST 2003
Since last August, Marissa has been complaining of stomach aches. We took her to a gastro guy. They did a celiac sreening and an endoscopy -- both negative. Other tests were also negative, so we're not sure what the cause is. I think it's stress related to school. I guess we'll find out in June when school ends.

christine mom of 10yr old boy today ,diagnosed feb 2003  (198.81.27.12) Tue Mar 18 08:59:10 PM EST 2003
hi all

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 08:59:37 PM EST 2003
ever sicne a study that was published saying there was a high prevalance is people with diabetes, they did it regularly, thats how we found out- the celiac was dx'd 2 years after the D

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 08:59:39 PM EST 2003
Hi, Sorry about the delay. I hope I can be of some help. My son's laptop seems to help, but we are getting many feet of snow today, and technology hasn't been keeping up.
Best,
Sonia

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 08:59:43 PM EST 2003
Jeff has Marissa ever been on a diet for celiac?

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes2Fdiabetes  (170.206.250.17) Tue Mar 18 09:00:12 PM EST 2003
Jeff has Marissa ever been on a diet for celiac?3F

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:00:23 PM EST 2003
Jeff- does Marissa drink a lot of diet soda? I know this sounds odd but we have a close family friend with diabetes who developed a mild type of ulcer, they thought from excessive diet soda- she stopped drinking it and the stoumach pains subsided

creno   (12.150.250.223) Tue Mar 18 09:00:33 PM EST 2003
hello all Wink 

christine mom of 10yr old boy today ,diagnosed feb 2003  (198.81.27.12) Tue Mar 18 09:00:41 PM EST 2003
Do you think my sone diag 2-20-03 was tested? or do I call  Confused 

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 09:00:48 PM EST 2003
Sheila ... no, we haven't done a celiac diet, but it's something that I plan to discuss with Brenda and Marissa. If we try it for a couple weeks, do you think it will make a difference?

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 09:01:17 PM EST 2003
Kathleen: Marissa drinks almost no carbonated drinks.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:01:39 PM EST 2003
if you have already been tested it wont fudge the results so there really would be no harm in trying Jeff, I mean you never know

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:01:46 PM EST 2003
Jeff, for YEARS my husband complained of stomach pains...quit artificial sweetners and pain is GONE!

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:01:51 PM EST 2003
Thanks Judith

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 09:01:54 PM EST 2003
There is a study at the Barbara Davis Center called "CEDAR". They are testing for the prevelance of celiac in families who have a relative with T1DM. The prevalence seems to be about 10% whether you have "D" yourself or if you are a 1st degree relative. It is now published that the prevalence if you DO NOT have a 1st degree relative and there is no diabetes in your family is about 1: 133.
Best,
Sonia

creno   (12.150.250.223) Tue Mar 18 09:02:03 PM EST 2003
i would like to ask a question about celiac to someone

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:02:13 PM EST 2003
Yes it should. My daughter has been on the diet for 2 months now and she hasnt complained of any tummy aches.

Mike type 1  (207.221.65.228) Tue Mar 18 09:02:14 PM EST 2003
Hi Everyone

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 09:02:21 PM EST 2003
Sonia, glad you could make it!  Smile 

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:02:44 PM EST 2003
How often do you need to have the kids tested for celiac?

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:03:03 PM EST 2003
Jeff, he had been tested for everything under the sun...quit artificial sweetners in October, and nothing sense

Jennifer Mom of Ciara, 8, dx'd at 7  (64.170.116.195) Tue Mar 18 09:04:09 PM EST 2003
Michelle.. are artificial sweetners related to celiac>?

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 09:04:31 PM EST 2003
Michelle -- I'll mention artificial sweeteners to Marissa. I don't think she uses much, but it doesn't hurt to mention it.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:04:49 PM EST 2003
I have heard things about a false negative reading, when the numbers come back really low. After Chris was dx'd our CDE insisted the entire family be tested and we were. My daughter's came back exremely low and they said they were going to repeat the test in a few weeks

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:05:17 PM EST 2003
Sonia, Welcome! And thank you for being our Guest Host tonight for the chat. For those of you who don't know Sonia, she is the President of the CWD Foundation, she lives in Colorado (now under how many feet of snow???), and she has a son with celiac and another son with type 1 diabetes - Sonia, do you also have celiac?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:05:20 PM EST 2003
Jeff she is also at a difficult age, it could easily be stress

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:05:51 PM EST 2003
Jason is effected with even just a bit of it...like if he doesn't know "it" contained any until after...even sugar free gum he notices

creno   (12.150.250.223) Tue Mar 18 09:06:38 PM EST 2003
we had my son tested for celiac disease. His biopsy was negative but the IgA and the IgG markers were a high positive,our gastro said that he might be glutten intolerant but didn't recommend anything further, just put him on zantac. Is this normal? Should we do something else?

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:06:50 PM EST 2003
What do these kids with celiac eat?

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:06:51 PM EST 2003
artificial sweetners and celiac? no, we were just a little off subject

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:07:23 PM EST 2003
do people who have kids with celiac worry about cross contamination? our CDE told us that once Chris's number went down we didnt have to- meaning he could eat the fries at mcdonalds without worrying about the grease cross contamination from the cooking, however this still leaves the possiblity of encountering wheat...is this usual or unusual?

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 09:08:15 PM EST 2003
I want to let you know that I was diagnosed with celiac several years ago myself. I never thought I had any symptoms - certainly not weight loss :-)
After diagnosis, I started limiting gluten, but I was probably only 95% compliant.
Later, I ended up being diagnosed with M.S., damage to my spine, herniated discs and some complications which seemed to be related to M.S.
It turned out that I had severe B12 deficiency, and 40% of the people with celiac may have B12 deficiency. The symptoms of neuropathy, pain, etc. can be very similar. Anyway , this convinced me to follow the diet 97%.....
Later, I developed a couple of rashes on my legs...
It turned out that these were dermatitis herpetiformis.
This is a celiac related rash and is very itchyt.
I now follow the diet 100% (or I do my best) and the rash has disappeared.
25% of the people with celiac will also get DH.

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:09:44 PM EST 2003
What is the rash like?

Ellen (FL) in NYC   (32.103.232.71) Tue Mar 18 09:10:17 PM EST 2003
What about anemia - can that also be a symptom of celiac?

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:10:32 PM EST 2003
Are erratic blood sugars also associated with celiac as a symptom? Confused 

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:10:51 PM EST 2003
wow good for you Sonia! do you worry about the cross contamination, such as things like fries from McDonalds? which are a potato product, but could probably be cooked with other foods that contain gluten?

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:10:59 PM EST 2003
Kathleen, I think some folks have to be stricter than others about the diet. When I plan the food for conferences, people with celiac usually tell me they need to be very, very strict (i.e., they can't have anything that even touched gluten), or they can be a little more liberal and do things like take the bun off the burger, etc. I've learned a lot about food preparation talking to the stricter folks. It definitely matters how you prepare food - what kind of oil you use, what flavors and additives might be in the food (i.e., malt flavoring in rice krispie treats bothers some, but not others with celiac)...

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:11:25 PM EST 2003
we had low blood sugars because of poor nutrient absorbtion, than would bounce high for no reason

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 09:11:30 PM EST 2003
creno, if your child has IgA deficiency (my oldest has this, and it is also an autoimmune disease), you need to use an assay called an EmA instead of one that tests for IgA abnormalities.

Ellen, anemia is absolutely a possible symptom of celiac.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:12:08 PM EST 2003
im just wondering if maybe Chris should be on the "stricter" diet to prevent these complications, I worry about the future! we do do things such as take the bun off, etc

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:12:39 PM EST 2003
I dont mean to sound too dumb but i never thought about cross contamination.

seanster type 1  (67.241.57.74) Tue Mar 18 09:13:06 PM EST 2003
 Eek 

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:13:39 PM EST 2003
Chris's number was in the 200's when first came abck- I guess normal is under 30? Not sure if that is 100% correct, but they put us on a very very strict diet, than loosened up when after 6 months it came down to 29 (with the diet)

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:13:58 PM EST 2003
Well, some parents at last year's conference were very unhappy with me because what I thought was a well-rounded celiac diet actually had quite a few things that were not ok for their children. Like additives and oils. I actually had these parents talk with the chef at the convention center to modify the food I'd ordered for them so it was ok. I learned a good lesson.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:14:06 PM EST 2003
we were told there was no option to only comply 95% or 97%. It's 100%, even with Chad having no symptoms. The complications are just too huge to ignore

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:14:25 PM EST 2003
what numbers are you guys talking about with the test results?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:14:31 PM EST 2003
what exactly does "the number" represent Sonia? I look at it as almost an eqivalent to the A1C is that correct?-

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:14:42 PM EST 2003
My son is 5, shows no symptoms, tested positive for antibody, but gastro wasn't anxious to have him tested further...said there isn't alot of info out on "little ones" with celiac, that I already have a lot on my plate, and once it is diagnosed, we can't ignore it anymore...do you think this is a good idea or acceptable?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:14:57 PM EST 2003
yes, there are certain kinda of glucose tabs we were told to avoid because of additives

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:15:14 PM EST 2003
Hey Heather! Heather was one of the moms who taught me about celiac last year. Wink 

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:16:24 PM EST 2003
does anyone have suggestions for substitues for things such as pizza parties? sometimes we make our own pizza with special crust, but I feel like Chris is usually just stuck eating a hot dog...he is a good sport but I would like some other options...any ideaS? Confused 

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:16:33 PM EST 2003
Laura - I hope you didn't think I was unhappy with you. We were new to it then too. It's a HUGE learning curve, and i certainly don't expect anyone who isn't dealing with the celiac day in and day out to know every thing. Just as I don't expect anyone who doesn't deal with diabetes to know everything

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 09:17:20 PM EST 2003
Michelle, the rash is slightly raised, very itchy and peels constantly....25% of the people with celiac will get this, and it can take quite a while to disappear.
Re: cross contamination and french fries....I think the best philosophy (if possible) is to try to steer away from N-6 FATTY acids. They are very pro-inflammatory, and if you can substitue n-3 fatty acids which are anti-inflammatory, it will do wonders for a disease which is inflammatory in nature. The n-3 fatty acids are: olive oil, fish oils etc....
My dream is that we will have a gluten free, n-6 free donut someday....there's actually a bakery near us that makes something close enough!

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:17:20 PM EST 2003
Michelle - Chad had and still has NO symptoms, but the endoscopy was quite clear with a positive dx

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:17:55 PM EST 2003
Heather, how old is Chad?

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:18:03 PM EST 2003
Nope - it was a great learning experience for me. And this year I am asking parents about it way ahead of time, so we are better prepared. You done good!

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:18:10 PM EST 2003
Kathleen, what I do for my daughter is buy her crust and let her make her own pizza and we try to make it a fun time.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:18:18 PM EST 2003
Chad is now 9 1/2. Dx D at 2 1/2, Dx CD at 8

benl642 Local business owner with special interest for diabetes  (12.230.79.150) Tue Mar 18 09:19:07 PM EST 2003
Ben here first time to the chat room I'm a business owner in Seattle area have great products aimed for Diabetics which include protein bars, and energy drinks and other exciting things my wife and I are in a contest and I'm trying to help her win. If anyone is interested in some free samples please let me know I would love to get your opinion on them.

Ellen (FL) in NYC Zack 15, dx'd 2/89, pump  (32.103.232.71) Tue Mar 18 09:19:59 PM EST 2003
Ben are those gluten free products?

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:20:05 PM EST 2003
Hello Ben are your products gluten-free?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:20:22 PM EST 2003
Sheila we've tried the same thing but its the last minute things that kill us! and i hate to say it, but sometimes I just dont have time to make his pizza, with all the sleepovers and birthday parties and basketball games and such...although I do try as best I can because it isnt his fault and I need to help him the best I can, i find it a rough balance sometimes, just as with the diabetes

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:20:37 PM EST 2003
Sonia, the reason I asked about the rash is that my son has had "skin" issues since he was just a few months old, always having rashes "pop up". He had one "pop up" last week. Should I have it looked at? I have always just popped some cream on it and it usually fades rather quickly.

Jeff Hitchcock   (216.68.227.14) Tue Mar 18 09:20:44 PM EST 2003
Ben, e-mail me ... *** ... and please, no advertising here.

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 09:20:49 PM EST 2003
Please don't get me wrong, it is SOOO much harder with a kid. I make pizza etc. in advance for my oldest son, but I know he will stray. I'm just thankful that he knows and tries his best.....for me, it isn't that big of a deal...but we live near Boulder, a healthfood mecca, and I can get absolutely anything gluten free - my favorite pastas are Tinkyada. If your entire family can go gluten free as much as possible, it really helps.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:21:53 PM EST 2003
Kathleen, I keep a variety of baked goods in my freezer

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:22:01 PM EST 2003
Sonia how come more clinics dont do random testing for celiac? is it a random thing? I have a friend that is a pedi endo in MA and her clinic will not do it randomly because they say its too $$...I never even knew CHris was being tested when he was! Do you think this will change with time?

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:22:49 PM EST 2003
Shouldn't kids be tested yearly for celiac? Our endo and ped have never tested Brandon had d for 1 1/2 yrs now.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:22:56 PM EST 2003
Kathleen I understand the feeling. I wish there were more places to make things like bithday cakes and other things for party's.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:23:20 PM EST 2003
thats a good idea Heather...we find it hard forthe entire family to go gluten free because it is so much more expensive- are all of your families entirely gluten free? I also feel guilty because unlike trying to limit carbs and sugars when first dx'd wtih diabetes (which everyone did) the celiac diet is very strict...so far I have found celiac as challanging if not more than diabetes for Chris

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:23:42 PM EST 2003
My other child, is tested annually for celiac now that her brother has it

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:23:45 PM EST 2003
Tammy they may and you may not know it...at least thats how it was with Chris

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:24:05 PM EST 2003
I think eczema in general is more prevalent with kids with diabetes - how is this rash different from eczema (or is it a type of eczema?)?

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:24:13 PM EST 2003
Our family has not gone gluten free. Mainly because its too expensive

Tammy mom of Brandon age 7 dx'd 10-01-01  (12.45.201.24) Tue Mar 18 09:24:28 PM EST 2003
I've asked both of them and they have both said NO haven't tested for that only done the A1c's

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:24:54 PM EST 2003
With an insulin pump we don't worry about limiting carbs

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:26:06 PM EST 2003
Heather we are the same because of the cost, it is much more expensive than "regular food", for one it isnt too bad but for 5....

Sonia Cooper President, CWD Foundation  (65.58.60.208) Tue Mar 18 09:26:28 PM EST 2003
Michelle, there are some web sites if you go to google.com and type in dermatitis herpetiformis that have some good pictures, but the test consists of going just outside the rash and testing for IgA which comes to the surface. Although they say it can take months to disappear, my doctor had me on a 3 day juice/fruit diet to cleanse - with LOTS of water, and it went away in a week.
Kathleen, I think now that they know it is more common than previouly thought, all kids will end up getting tested. If you decide to avoid the biopsy, I don't personally think there is anything wrong with that, but limiting gluten, and making non-gluten choices for your entire family would still be a good idea. Once a year - at least- you should be retested, and for one week prior to the blood draw, let them eat whatever they want ( a gluten "challenge:" diet). If you aren't eating gluten at the time of the test, you can get a false negative.

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:26:51 PM EST 2003
Laura B, Westin's ped has always called it eczema, but that was really before the diabetes...and I haven't really had it looked at since, didn't know if I should make it a priority

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:28:26 PM EST 2003
yes, they think my younger daughter may have tested as a false negative because her number was incredibly and unusually low...she will be retested soon Sonia does the rest of your family "cooperate" with the gluten free diet? i think I would face some resistence, but it is defiantely soemthing to think about as Chris doesnt have an option

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:29:28 PM EST 2003
Sonia, if you don't have the biopsy, at least in Canada, you can not claim any deductions on your income tax for the celiac

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:30:28 PM EST 2003
income tax deductions for celiac? i have never heard of that...is that related to food cost?

Maryann (michigan) Jill, diagnosed at 11 ,now 18, pumper  (4.3.40.15) Tue Mar 18 09:30:58 PM EST 2003
hi, I had my girls tested because my sister has had Celiac for about 40 yrs. Was told the blood test was real expensive. like about $200 I think, Then when we got blood drawn I was not too re-assured that the woman looking up the right test even sent it off right because she didn't have a clue how to code it.

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:31:15 PM EST 2003
You can deduct on your income taxes in Canada for celiac?!

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:31:31 PM EST 2003
Kathleen, yes the food. Plus there is a disability tax credit that you can apply for, but very few people with "just" celiac receive it

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:32:30 PM EST 2003
but for us, we reach the maximum allowed medical deduction with just the diabetes (and then more), so can't claim anything for the celiac.

Maryann (michigan) Jill, diagnosed at 11 ,now 18, pumper  (4.3.40.15) Tue Mar 18 09:32:39 PM EST 2003
looking at Jill's blood test order, that has a box checked for anit-endomysial antibody, which I assume was the test for celiac. but don't know

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 09:33:20 PM EST 2003
In terms of expense, here are a few things we have tried that actually are less expensive than bread....
potatoes, rice, corn vs. flour tortillas, more ethnic food (it seems that white flour is a U.S. tradition, and most ethnic recipes use rice or corn)
We also invested in a bread maker, and my kids without celiac devour the gluten free bread - sometimes before I get to try it....it's really not bad at all!
We also found that Vitamin Cottage has lower prices than Whole Foods or Wild Oats.
It actually seems like our biggest problems are with the "cheap" n-6 fatty acid foods that we shouldn't be eating anyway.....but that's the problem, and if you have a kid who has friends who want to eat hot dogs and pizza, it just isn't easy.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:33:35 PM EST 2003
Maryann did you get it done through your endo or somewhere else?

trico   (12.27.188.144) Tue Mar 18 09:33:46 PM EST 2003
does anyone know is it possible to get a false positive. should we get retested before getting an endoscope done on our 6 yr old

Maryann (michigan) Jill, diagnosed at 11 ,now 18, pumper  (4.3.40.15) Tue Mar 18 09:34:25 PM EST 2003
endo prescribed for Jill, and a gastro dr for the other daughter. Had the blood drawn at the hospital and sent to mayo or somewhere.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:34:29 PM EST 2003
Sonia, do lots of kids with celiac have a tendency to have eating disorders? My daughter will be 7 next month and we have trouble just getting her to take bites of food. Last week we caught her in the bathroom spitting out her food.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:34:34 PM EST 2003
Sonia hot dogs are not good for the diet?? we were told only to eat a certain kind, but we eat them all the time here.....is that something I should avoid?

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:35:18 PM EST 2003
Trico, we were told it depended how high the result is. Chad's was way over the top, so they didn't see a point in redoing the blood work, but there are other locals who have had second set of blood work that has come back negative

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:36:50 PM EST 2003
another kid in our support group had an elevated level and the endoscopy came abck negative...is that common?

Michi   (67.32.49.193) Tue Mar 18 09:36:51 PM EST 2003
Hey everyone!

trico   (12.27.188.144) Tue Mar 18 09:37:01 PM EST 2003
heather, we were not told what the result # was what is over the top and what is normal?

Michi 20, type 1, dx'd 3/02  (67.32.49.193) Tue Mar 18 09:37:35 PM EST 2003
I heard someone mention earlier in the parents room that anemia can be a symptom of celiac. I just found out that I'm very anemic.

Maryann (michigan) Jill, diagnosed at 11 ,now 18, pumper  (4.3.40.15) Tue Mar 18 09:37:36 PM EST 2003
I think the endoscopy basically looks for the damage. blunted vili.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:37:52 PM EST 2003
Trico, Chad had the TTG, his level was 160+ normal being below 20

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 09:37:57 PM EST 2003
We use a bread mix called "favorite" white bread, and everyone loves it. There are some really bad products out there, but there are also some great ones that rival or surpass those with gluten. Now that is published that it is fairly common in the U.S., I think we will get more choices.
RE: tax laws...in the U.S., you would have to save all your receipts and show that your total medical out of pocket exceeds 7.5%, and most people don't bother.

A blood test can come back with a false positive. Getting retested after a "gluten challenge" and letting your child eat gluten for a week is a good idea. If you get two positives, it's best to try the GF diet the best you can.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:38:52 PM EST 2003
Kathleen, we've had two local kids who tested positive, but their endoscopy were negative

trico   (12.27.188.144) Tue Mar 18 09:40:02 PM EST 2003
Heather, does that mean that those 2 kids do not have celiac?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:40:18 PM EST 2003
interesting Heather, any idea why that happened?

Michi 20, type 1, dx'd 3/02  (67.32.49.193) Tue Mar 18 09:40:58 PM EST 2003
I wonder if I should get tested for celiac?

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:41:15 PM EST 2003
That bread mix, is that something you would find with all the bread mixes at a large grocery store, or something you would go to a health food store for?

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:41:40 PM EST 2003
They are going on eating gluten. There is question whether they should follow up with blood work annually. That is not being done yet

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:41:43 PM EST 2003
we really avoid the bread all together, do have some rice rolls but other than that we try to eat a lot of food that is gluten free naturally, not necessarily gluten free market products, chris seems to enjoy that more

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:41:46 PM EST 2003
Hi, i am just joining. hayley was diagnosed with D at three and last fall with celiac........the celiac is horrible.....the diet is gross....hayley eats rice for brekfast every morning.......

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:41:51 PM EST 2003
well I beeter get going, thanks for all the info!

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:42:24 PM EST 2003
By Kathleen

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:42:30 PM EST 2003
Pauline what about corn pops? lol Chris lives on those and eggs for breakfast!

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:43:08 PM EST 2003
Kathleen, I'd love some suggestions for what Chris eats

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:43:12 PM EST 2003
Or Rice Krispies?

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 09:43:20 PM EST 2003
Shiela, kids with diabetes are more prone to eating disorders, and celiac is not helpful in this regard. They already have so many challenges, it is important to address any signs early. At the Barbara Davis Center they have three dieticians and two social workers to help, but this is rare, and I doubt other clinics are as well equipped.....but here is a summary of their advice.
Provide your best "smorgasbord" of nutritious foods at each meal....fruits, veggies, carbs, proteins, calcium (cheeses), etc.....kids WILL pick what they crave, and they will eventually crave what they need...don't push, prod, or force....just provide as best you can.
I hope that makes sense.
The main thing to remember is that they WIILL get "JUNK" away from you (n-6 fatty acid/processed/refined items)....they will get PLENTY of this. Perhaps we can just provide the rest at home and then relax knowing that we can't guarantee the menu outside the home.

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:43:27 PM EST 2003
I buy most of Hayley's food from Kinnickkinnick. Does any one else buy from them???

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:43:57 PM EST 2003
no, rice krispies have wheat...you need the gluten free kind! haha ok Heather...Ill stay 2 more minutes! we usually eat corn pops or eggs in the morning, sometimes cinnamon toast on these good rice rolls

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:45:01 PM EST 2003
for lunch he really likes his sandwhiches better on the corn toritllas....instead of the bread we have tried, although I am going to try the kind Sonia suggested

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:45:04 PM EST 2003
Kathleen......rice crispies have MALT.......a no no for gluten free diets......

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:45:12 PM EST 2003
we buy from Kinnnikinnick all the time

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:45:25 PM EST 2003
he likes popcorn a lot, and veggies...have also developed a good taste for macaroons! peanut butter and rice crackers also

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:45:30 PM EST 2003
Kathleen, Corn Pops are not GF in Canada

trico   (12.27.188.144) Tue Mar 18 09:45:31 PM EST 2003
we are new at this but i find just thinking of switching over everything to be overwelming. i need meal ideas. also where do you get those "good rice rolls" we are having the same problem with bread.

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:45:55 PM EST 2003
Curious, what else is malt in?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:46:15 PM EST 2003
for dinner we usually have rice or potato as the starch, and than meat- just prepared a little differently than before, without breading and such or with a gluten free alternative

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:46:35 PM EST 2003
Kinnickkinnick?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:47:02 PM EST 2003
as far as I know they are here?? alsmost all kids with celiac I know eat them....anyone else know? Heather what does Chad eat? the problem we have now is not finding food really, just finding variety

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 09:47:03 PM EST 2003
Rice Krispies have Malt, and if you are very sensitive, it is best to stick with a health food version that doesn't contain the malt....but malt seems to be in EVERYTHING!!! It must be a magic ingredient. If we can get the NIDDK (they oversee diabetes and celiac research) to help pressure the FDA regarding GF labelling, I think we will see fewer products adding malt.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:47:05 PM EST 2003
www.kinnikinnick.com

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:48:23 PM EST 2003
interesting...we were told that rice krispies are a no-no, but chris is not considered "very sensitive"

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:48:38 PM EST 2003
Michelle, Chad eats a lot of rice cakes, I make bread

Maryann (michigan) Jill, diagnosed at 11 ,now 18, pumper  (4.3.40.15) Tue Mar 18 09:48:45 PM EST 2003
there are some really good recipes, but it takes a lot of time!! And I wouldn't worry about 100% compliance. There are a lot of people with celiac that don't even know they have it. Very bad to ignore it though. You could need B vitamins and other supplements.

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:48:45 PM EST 2003
well he doesnt midn the gluten free kind, so i guess its better we stick with that!

trico   (12.27.188.144) Tue Mar 18 09:48:52 PM EST 2003
we bought some wonderful cookies from kinnickkinnick. and some bagels that kalen loves. we also found that noodles dont taste much different than "normal" noodles

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:48:59 PM EST 2003
alright I really better be going now, thanks again for the info

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:49:01 PM EST 2003
Michelle, I buy GF cereal at the health food store

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:49:14 PM EST 2003
I recently saw a research article that spoke to wheat being a trigger for diabetes in children. That would suggest to me that Hayley had celiac first which may have triggered the diabetes. Does anyone know more on this subject???

Linda Mom of Andrew, 11, dxd at 8, pumping  (24.70.149.30) Tue Mar 18 09:49:20 PM EST 2003
Hi, what is the blood test called that tests for celiac and what do the results/numbers mean?

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:49:26 PM EST 2003
Kathleen, do you belong to the CWD celiac mailing list?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:50:03 PM EST 2003
no- I acutally didnt even know there was one!

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:50:16 PM EST 2003
please join us!

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:50:26 PM EST 2003
What about oats?

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:50:31 PM EST 2003
could u email me information on joinging? my hubby needs the computer, but my email is Kathleen374@yahoo.com

Kathleen(CT) Christopher, 8, celiac dx'd last summer, diabetes for 2 years, pumping  (205.188.209.101) Tue Mar 18 09:50:45 PM EST 2003
thanks! bye

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:51:17 PM EST 2003
I didnt know they had one either

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:51:20 PM EST 2003
We have 72 people from all over the world with kids with both diabetes & celiac

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 09:51:51 PM EST 2003
Please email me the same info Sheila2676@yahoo.com

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:51:55 PM EST 2003
Laura, the jury is still out on oats here in Canada. Although the oats seem to be safe there is great concern with contamination as oats and wheat are usually grown together.......anyone else no more......

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:51:59 PM EST 2003
Laura, Oats are very controversial. Most people avoid them

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:52:42 PM EST 2003
Heather, i am interested....how do I join???

trico   (12.27.188.144) Tue Mar 18 09:52:48 PM EST 2003
how do you get on the cwd mailing list.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 09:54:03 PM EST 2003
any celiac children with diabetes on the pump?We are considering it and looking for advice..

trico   (12.27.188.144) Tue Mar 18 09:54:04 PM EST 2003
what has been found to be the best flour to make homemade product? bread, cookies, muffins....

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:54:04 PM EST 2003
Heather.....it looks like we are all interested.......

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:54:11 PM EST 2003
http://www.childrenwithdiabetes.com/people/mailinglists.htm then click the celiac/type 1 list and add your emial addresss

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:54:26 PM EST 2003
If you go to the main cwd home page, and look on the lefthand side, under People - click on Mailing Lists and follow the directions. There are quite a few to choose from. The celiac list is one of them.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:54:56 PM EST 2003
Debi, we were pumping before celiac and glad we were! It saved us in the early days when I had no clue what I was cooking and a few things turned out inedible

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:55:25 PM EST 2003
Trico, our favourite bread is with a bean flour mixtire

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 09:56:06 PM EST 2003
Last night we had corned beef, cabbage, veggies, potatoes, salad, apples with cheese from Ireland, etc...my philosophy is to fill up the plate so much you don't miss the bread.....and the potatoes are a good filler. It was really wonderful.
The "good" thing about celiac, is that it forces you to cook with "whole" foods and discover your "gourmet" side....
In Boulder, there is a very well known cooking school called "Cooking School of the Rockies". The owner has celiac....drinks and serves great wines and makes incredible sauces and recipes and usually her students don't even think about the idea that she didn't serve or teach them to cook gluten products....for instance, corn starch is a better thickener in flour...it makes a transluscent rather than cloudy gravy.
Anyway, she does teach one class called "wheat watchers" , but we learned how to properly roast garlic and veggies in addition to how to make great pizza and past doughs....
This may not make any sense, but perhaps having celiac helps you avoid total "junk" and helps you discover some really great alternatives.....With diabetes, knowing how to cook and choose and appreciate very good, healthy choices is important even if you don't have celiac. The challenge is to create enough good alternatives that nobody feels deprived. The other challenge is to hold out hope for a "cure". Perhaps the best "cure" may be improved labelling, and that should come soon.

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 09:56:26 PM EST 2003
Question.....how long after the gluten free diet should we have our kids tested to ensure that their numbers are down and they truly are gluten free ie damaged villi on on the road to repair????

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 09:56:40 PM EST 2003
thanks heather..We are having such a hard time now that he is absorbing all his food i guess..Any gluten in the tape used??

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 09:56:50 PM EST 2003
Well, I don't know for sure if my son has celiac, but from my experience, food has become less of an issue on the pump! I don't have to worry if he doesn't want to eat... or if we can't follow a schedule

Maryann (michigan) Jill, diagnosed at 11 ,now 18, pumper  (4.3.40.15) Tue Mar 18 09:57:14 PM EST 2003
one thing I should have said,..100% compliance at first is important to give the intestines time to heal. My sister has been vigilant for 40 yrs and lead a fast paced career, but certainly has had a bit of gluten in her lifetime too. When she got too far off track though, it mimiced some bad gallbladder problems.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:57:59 PM EST 2003
Debi, I don't think there is gluten in the tape

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 09:58:16 PM EST 2003
pauline..We just tested at the 6 month period..The #s were still evident but much lower..I've been told this is expected.Some people I have talked to said it too up to 2 yrs. for antibodies to disappear

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 09:58:29 PM EST 2003
Thanks heather

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 09:58:37 PM EST 2003
Pauline, Chad was tested 6 mos after going GF, and still was a little elevated. Our Ped wants to test him annually

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 09:59:13 PM EST 2003
I am new here and was hoping to learn about this seeing as we will be posibly testing for this in two weeks

Laura B CWD Events, Sam's mom  (68.43.235.39) Tue Mar 18 09:59:53 PM EST 2003
Sonia, I want to thank you for hosting the chat about celiac this evening. I am signing off - time to get the kids to bed. This chat room will stay open for another half hour or so for those of you who wish to continue the discussion. G'night! Smile 

trico   (12.27.188.144) Tue Mar 18 10:00:04 PM EST 2003
can you get bean flour in health food stores? and about the pump i cant say from experience but a few friends have their 5 and 8yr olds on the pump and they love it.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:00:08 PM EST 2003
Robin, enjoy what you don't have right now. I'd worry about the possibilities later

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:00:17 PM EST 2003
good night Laura

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:00:48 PM EST 2003
Trico, yes, I buy it at our health food store. Pumping is AWESOME!

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 10:00:56 PM EST 2003
At the next three month visit, after coming up positive, you could be retested to see if the level has been reduced. Remember, EVERY MEMBER (1st degree relative) of a person with T1DM has about a 10 % risk and should be tested. You can have celiac and have NO PROBLEMS/SYMTOMS for many years, but later, you may find that there is sclerosis, neuropathy, B12 deficiency symptoms or a strange rash....I hope not to make people worry, but many clinicians don't know yet the importance of testing the parents and siblings.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:01:01 PM EST 2003
What was some of the early signs. G'night to you  Wink 

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:01:05 PM EST 2003
We are getting our new minimed---waterproof pump tommorrow. Is it really waterproof.........?????? our problem has always been related to the site getting soaked while swimming....I cannot imagine that this problem will dissappear??? Anyone know?

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:01:47 PM EST 2003
Heather is it true you can administer very low amounts of insulin with the pump?

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 10:01:58 PM EST 2003
Westin keeps his minimed on for showers and he even took a bath with it on the other day...no problems!

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:01:59 PM EST 2003
Pauline, just got our new paradigms on Saturday. Kids love them!

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:02:25 PM EST 2003
Robin..Just make sure they do a full celiac panel.Otherwise you may not be sure..TTg antiendomysial(sp?) anti glaidin IGa and Igg..Silly names, but ask for all.Debi

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:02:41 PM EST 2003
Robin, For us it was a big toddler belly that never dissappeared as Hayley left the toddler years.

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 10:02:44 PM EST 2003
Night Laura, I'm enjoying watching the blizzard outside. We are getting the "storm of the century" here in Denver....Matthew is working up some good shovelling muscles and this will be the first time with two days in a row off school.....maybe three!!!

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:02:45 PM EST 2003
Sheila, Chad is on a total daily dose of 15, and Alyssa 20. They have many hours where the pump is delivering 1/10th of a unit of insulin successfully

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 10:02:53 PM EST 2003
Of course, now that I think of it, it wasn't submerged, but it should be fine for up to 30 minutes (I think it is 30 minutes)

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:04:18 PM EST 2003
Michelle, the new paradigm is good for 24 hours at 8 feet

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:04:37 PM EST 2003
Heather do you have lots of hypo episodes?

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:04:46 PM EST 2003
Heather...what does the new pump do to protect the site....ours always tops working after swimming...that is the site

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 10:04:49 PM EST 2003
I even find that at night, I have to go back and forth, one hour he gets .1, the next hour 0 units...and he usually gets around 15 total per day

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 10:05:02 PM EST 2003
The pump really is great. Matthew has been pumping for three years, and we the Paradigm seems to be very kid/waterproof. He is also wearing a Glucowatch 2 now which is not waterproof. It's pretty amazing to see his numbers every 10 minutes.

Linda Mom of Andrew, 11, dxd at 8, pumping  (24.70.149.30) Tue Mar 18 10:05:06 PM EST 2003
Debi...those tests that you mentioned are all blood tests?

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:05:21 PM EST 2003
Heather do you mean 15 and 20 units?And are all the pumps capeable of delivering very small doses?

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:05:41 PM EST 2003
Yes linda all blood

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:05:46 PM EST 2003
Our daughter's Endo did blood tests for celiac. 2 out of 3 were positive. Gastro Dr will be doing biopsy in 2 weeks to confirm Celiac. Was this painful for your kids afterwards? Sore throat, etc?

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:05:59 PM EST 2003
Sheila, we have a lot less hypos then before we were pumping. They average 1 to 2 a week

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:06:25 PM EST 2003
My daughter is about to start insulin therapy for the first time and I am worried about the lows.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:06:41 PM EST 2003
Debi, yes 15 units and 20 units TOTAL. I think most pumps can deliver 1/10 of a unit

trico   (12.27.188.144) Tue Mar 18 10:07:16 PM EST 2003
thank you everyone for the answers. its not as scary when you know a little more. thank you sonia for hosting this and i hope that you dont get to snowed in! im hoping that we are done here in maine.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:07:24 PM EST 2003
chris, my son was 7 and did very well with the biopsy..I was so scared but no sore throat, just really grouchy and tired.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:08:16 PM EST 2003
Pauline, the sites are the same. Which site do you have trouble with?

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:08:20 PM EST 2003
Chris, hayley had biopsy lst fall. they put her out for it.....absolutely no problem afterwards......the only problem was me......I was very upset about the celiac...i really thought that the diabetes was enough for me to manage....

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 10:08:22 PM EST 2003
There actually is a test which allows a person to swallow a pill - which contains a small camera - and the pill travells through the body in about 8 hours. You wear a belt during this time and the small pill/camera transmits the pictures to the belt. This will give your gastro the diagnosis, and it is pretty cool, but it is still fairly rare, and most insurance doesn't carry it YET. However, this does work, and is FDA approved....(and you don't have to return the pill/capsule). It just gives some hope for the way that technology is advancing.

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:08:51 PM EST 2003
Heather...we use the soft set

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:08:54 PM EST 2003
Chris, Chad was VERY anxious beforehand. A little groggy afterwards, and back to "normal" by 6pm

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:09:04 PM EST 2003
Heather how old were your children when you stared the pump..?Jake is 7, would this be considered young do you feel

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:09:18 PM EST 2003
Do any of you moms have trouble getting your kids to gain weight? My daughter will be seven and she only weighs 40lbs. Her doc said this is ok as long as she doesnt lose any weight.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:09:38 PM EST 2003
Pauline, have you considered using the quickset? WE had a lot of similar probs with the sofset. One suggestion is to sandwich the sofset between the two supplied tapes

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:10:08 PM EST 2003
Debi, Alyssa was 9 and Chad was 7. I think it's a great age!

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:10:35 PM EST 2003
Thank You Sonia, do you chat often when will be the next night of chat

Linda Mom of Andrew, 11, dxd at 8, pumping  (24.70.149.30) Tue Mar 18 10:10:55 PM EST 2003
Do you know of a site/page that explains about symptoms/or lack of for celiac and also talks about how people with diabetes are at risk for it? My son's doctor doesn't want to test because Andrew does not have symptoms.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:11:14 PM EST 2003
Sheila, Alyssa is 11 and weighs 55 lbs. Chad is 9 and weighs 48 lbs. Both have always been very low on the weight scale

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:11:19 PM EST 2003
Hayley is just 6 and 45 lbs....obviously no problem with weight gain.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:11:33 PM EST 2003
Linda, check out www.celiac.com

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:11:40 PM EST 2003
Sheila my son is 7 and only weighs 45 pds..Since celiac diagnosis he has started to noticably gain ..I can't wait to see exactly how much at his endo appoint..But yes he always had weight gain trouble

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:11:53 PM EST 2003
Heather....I made a mistake...we use the quick set

trico   (12.27.188.144) Tue Mar 18 10:11:53 PM EST 2003
sheila, my son is 7 and only weighs 40lbs too. my doctor says the same thing. i guess as long as hes eating he is fine. and linda my son had no symptoms it was just found on a routine test. we have not had a biopsy but the blood test was positive.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:12:18 PM EST 2003
Thanks I feel better now. Sometimes I just feel like Im not doing enough for her.

Linda Mom of Andrew, 11, dxd at 8, pumping  (24.70.149.30) Tue Mar 18 10:12:20 PM EST 2003
thank you Heather

Mary   (205.188.209.101) Tue Mar 18 10:12:35 PM EST 2003
hi Confused 

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:12:42 PM EST 2003
Thank you. This makes me feel better about getting the biopsy done. Now to figure out the new food regimen. How do you get a 70 carb meal without bread/crackers/muffins etc? yikes!

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 10:12:47 PM EST 2003
Linda, from what I was told, young children probably wouldn't show any symptoms, simple because they wouldn't have "had it" long enough to have symptoms.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:12:59 PM EST 2003
Pauline, Alyssa uses that and has no problems. Do you use IV Prep

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:13:10 PM EST 2003
My son is 11 and very small for his age I read that celiac can be limkied to slow growth  Confused 

Mary   (205.188.209.101) Tue Mar 18 10:13:10 PM EST 2003
what room is this Confused 

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:13:15 PM EST 2003
Linda my son had no real symptoms either..He was just small, but so am i..Celiac was found routinely and was a complete shock even to his endo.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:13:23 PM EST 2003
hi Mary

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:13:27 PM EST 2003
Linda, in Canada, at the clinic we go to all the diabetic kids are automatically tested yearly for both Celiac and Thyroid disorder. Your DR should be doing it automatically.

trico   (12.27.188.144) Tue Mar 18 10:13:36 PM EST 2003
hi mary join the club that noone whants to be a part of

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:13:36 PM EST 2003
Celiac

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:14:08 PM EST 2003
Linda, there is also a study by our endo that shows he tested all the type 1 kids and the incidence of celiac was alarming. Send me your email address and I'll send you the link

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:14:25 PM EST 2003
Robin, Has your son already been diagnosed with celiac?

Linda Mom of Andrew, 11, dxd at 8, pumping  (24.70.149.30) Tue Mar 18 10:15:04 PM EST 2003
Heather....Linda@cwdmail.com

trico   (12.27.188.144) Tue Mar 18 10:15:19 PM EST 2003
well i am really going this time thanks again! hope to talk to you all soon.

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 10:15:36 PM EST 2003
I have to get going...but I thank everyone for a lovely evening. I think I will definitely find out what Westin's antibody numbers were and go from there! Thanks for all the great info!

Pauline Mom of Hayley, 5, dx'd at 3  (199.243.112.38) Tue Mar 18 10:15:43 PM EST 2003
Trico.....I am with you....how did this happen...I have lots of friends with kids with D but none with both.....It really complicates things doesn't it?

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 10:15:49 PM EST 2003
During my "snow" day, I have been reviewing the next version of "Understanding Diabetes" by H. Peter Chase (the Pink Panther Book).....we will be including information on celiac this time, and hopefully with increased awareness, we will have increased choices and advocacy. Because the NIDDK is charged with finding a cure for both T1DM and celiac, and both are autoimmune, we are a step ahead.
Q:What do both have in common?:
A: Inflammation
Q: How do you resolve inflammation?
A: Anti-inflammatories:...n-3 fatty acids are a natural alternative to combat inflammation (n-6 would be the opposite)
Q: What damage does inflammation cause?
A: Oxidation
Q: What can you do about oxidation?
A: Provide anti-oxidants: fresh fruits, veggies, vitamins C, E, multi, green tea, alpha lipoic acid, etc...
There are likely good things we can provide that will help people with celiac or diabetes or both....they are both autoimmune and have lots in common.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:16:15 PM EST 2003
No he has not however we are going to a very good hospital for his growth and for my daughter to be checked by a G doc

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:17:15 PM EST 2003
Is the smaller needle set ok for kids??I had a pump rep come and I inserted a rather large needle into myself, and of course had to pretend it didn't hurt..My son was petrified of the needle size.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:17:49 PM EST 2003
I too have to go. Feel welcome to join the CWD mailing list for diabetes & Celiac.

Heather mom blessed with two  (209.52.93.55) Tue Mar 18 10:18:07 PM EST 2003
Debi, Alyssa uses the 6mm Quickset. Chad uses the Sils

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:18:17 PM EST 2003
Bye Heather. Thanks alot.

Linda Mom of Andrew, 11, dxd at 8, pumping  (24.70.149.30) Tue Mar 18 10:18:50 PM EST 2003
Thank you for your information and help?

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:19:17 PM EST 2003
Thanks heather..

Sonia Cooper President, CWD Foundation  (63.211.244.66) Tue Mar 18 10:19:19 PM EST 2003
Matthew's favorite show is Smallville, and he is tugging my arm so I have to go too. I'm happy to answer questions anytime though at
sonia.cooper@cwdfoundation.org
Thanks!
Sonia

Michelle (MI) Mom of Westin, 5, dx'd @ 2, pumping for 1 yr, tested positive for celiac antibody  (170.206.250.17) Tue Mar 18 10:19:21 PM EST 2003
I use the silhoette(?) and it has a long needle, and it took me a while before I broke down and tried it. I just didn't have any luck with the quick set or soft set. I use an inserter and emla. (I hope it comes back on the market soon...running out!)

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:19:22 PM EST 2003
Sonia, the vitamins that you mentioned....do you mean from food sources? Are vitamin pills on the bad food lists or did I misunderstand something?

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:20:06 PM EST 2003
Thank you for hosting Sonia

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:21:00 PM EST 2003
Thanks Sonia Wink 

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:21:59 PM EST 2003
I have a question about diabetes for anyone who can help

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:22:05 PM EST 2003
I think the silouette is what I inserted last night..My son called it a sword..Maybe we'll see about an inserter..I have offered to try all of it first for him..So I'll ask the pump rep.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:23:38 PM EST 2003
go ahead sheila..i can try

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:24:41 PM EST 2003
My daughter has been honeymooning for 9 months. Her sugars have been running high all day except for mornings they are around 120. Her endo keeps saying just watch her and her sugars have been as high as 585. Her pedi doc says she needs to be on the pump now. My question is, do i listen to her pediatrician or endo? I am worried also of the highs.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:28:20 PM EST 2003
Jake honeymooned or so we thought for about two years..When celiac was diagnosed we saw that the reason for the erratic sugars was inabsorbtion of foods..Sometimes he absorbed stuff sometimes not..This could be possible..Do they think it's honeymoon just because it's erratic or because the morning # is low??And how much insulin are you using?

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:29:02 PM EST 2003
My daghter is 6 and her doc says not yet to pump. Does she sneek food I know mine has in the past it,s so hard for them. Maybe her honeymoon is coming to an end.

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:29:23 PM EST 2003
Sheila, it might be a good idea to check her at 4am to make sure she isn't going low in her sleep. That could account for such high rebound numbers during day.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:30:42 PM EST 2003
What time do you check in the morning could it be the dawn phenominon

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:30:47 PM EST 2003
As of right now she is not using any insulin. I took her in for a follow up to her pediatrician and she was suprised her endo had not started therapy yet. Her pedi doc also said if they had not started therapy by may I needed to come in and she would do it herself.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:31:17 PM EST 2003
forgive the spelling

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:31:23 PM EST 2003
Thanks Chris I will do that

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:31:32 PM EST 2003
Oh my ghosh. I would change endos or let ped take over.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:31:58 PM EST 2003
Wow..I don't know then sheila..With 500 blood sugars it certainly seems that she needs insulin for sure

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:33:07 PM EST 2003
They told me to call for sugars above 200 during regular office hours and to call 24/7 if above 300 but when I do they just tell me to do the same thing and watch her.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:33:43 PM EST 2003
Sounds like you need to listen to peds I agree with Chris

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:33:50 PM EST 2003
I've never heard of anything like that..ever

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:35:01 PM EST 2003
Does she have type 1 diabetes

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:35:11 PM EST 2003
We live in a small town and I drive 30 miles to see her endo but she is not a pedi endo. The closest one is 200 miles from us Confused 

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:36:36 PM EST 2003
We drive 3 hours to see our daughters specialist

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:37:03 PM EST 2003
yes she has type 1. She was at school and the teacher said she just laid down outside during recess and they couldnt wake her up. They called me and for some reason I told them to check her blood sugar. They called me back and it was only 33. Thats when we first started seein probs.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:37:34 PM EST 2003
I believe im gonna do the same and drive also. How often do you go?

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:38:26 PM EST 2003
You need to see a pediatric spealist to get to the bottom of how to treat her diabetes. We go every three months

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:39:01 PM EST 2003
she see's her endo every 6 months

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:39:13 PM EST 2003
Maybe at the very least there might be another regular endo besides the one you are using nearby?? Jkae also had low sugars before diagnosis..I can't prove it but the dr said this is the precurser to diabetes sometimes..We go every three to the endo and evry 6 to the gastro

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:39:45 PM EST 2003
We see our ped endo every 3 months for A1c, etc. You can probably arrange to fax your child's numbers to dr every week at first to get on track.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:40:37 PM EST 2003
How did they treat that low at school??was the ambulance called or did they finally get her up?

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:41:07 PM EST 2003
She hasn't been seen since dec 26. I fax her levels every week. The last time they checked her A1c was 6/02 when they dxd her.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:42:17 PM EST 2003
They crushed a glucose tab that was someone else's. They never called the ambulance. Her dad picked her up and took her to the ER.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:42:28 PM EST 2003
How about ketones has she ever had any with the highs she has had

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:43:53 PM EST 2003
I didnt even know to check her ketones (dumb huh) until a couple of weeks ago when we saw the pediatritian. Her endo never mentioned it.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:45:08 PM EST 2003
We were not alowed to take our daughter home from the hospital without education. Where do you live?

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:45:27 PM EST 2003
A1c's can be a good judge of the overall past three month control..But they don't tell the whole story..If Jake has a 4 or 500 I treat it seriously, and most always have been taught to test for ketones..You must be so mad at that endo..I hope you can get another one quickly

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:46:09 PM EST 2003
Her endo sounds like an idiot!

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:46:54 PM EST 2003
It really sounds like your pediatrician might knowledgeable enough to handle this (at least until you find a ped endo)

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:47:03 PM EST 2003
East Texas. But @ the ER they didnt know she was diabetic.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:47:10 PM EST 2003
and a 33 scares the bejesus out of me..The lowest we've been was 45 and that almost killed me

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:47:53 PM EST 2003
Im so glad all of you are helping me. I didnt really know what to do. I am gonna call her pediatritian tomorrow and get all of this taken care of.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:48:55 PM EST 2003
I agree with chris.I would call the pediatrician tomorrow.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:49:07 PM EST 2003
It scares me to go to my local hospital they don't know anything about kids.

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:49:37 PM EST 2003
I hope you start receiving the support from your ped that you deserve. Good Luck

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:49:49 PM EST 2003
I have a 15 y/o that was dxd with ulcerative colitis in 99. Her pediatritian told me she wanted to test her for celiac in case she was misdiagnosed.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:50:25 PM EST 2003
one of our hospitals here was named nan travis. everyone here called it nan tradgedy

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:50:25 PM EST 2003
Sheila don't take any crap from them this is somewhat ergent make them hear you.

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:51:13 PM EST 2003
My local hospital is like that too..Luckily I'm there to teach them when we've had emergencies...They are very uneducated about diabetes, I dread to think of him ever there without me.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:52:07 PM EST 2003
I think i have been because i just didnt know what to do and now that i have talked to all of you my endo seems to be uneducated.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:52:39 PM EST 2003
Are they willing to listen to you ? I have one doc there that hates me I dred ever getting him agian.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:53:40 PM EST 2003
I bet they hear me loud and clear tomorrow morning because now i have all night to get worked up about it! lol

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:54:09 PM EST 2003
Do all of everyone's kids go to public schools?

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:54:15 PM EST 2003
Sheila you keep reading and learnigng because you have no choice . You will know more than your doc in know time

debi mom of jake diabetes dx age 4 celiac age 7  (64.12.96.41) Tue Mar 18 10:54:25 PM EST 2003
Thanks everyone and good luck sheila..Feel free to email me Auntdivine@aol.com..We're all in this together, so you can ask for any help..Bye everyone

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:55:05 PM EST 2003
Thanks so much

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:55:13 PM EST 2003
Bye deb hope to chat agian

Chris Mom of Sophie dx at 9  (152.163.189.236) Tue Mar 18 10:55:16 PM EST 2003
Go for it Sheila! I'm signing off now. I've enjoyed chatting with you all.

shel me and son both diabetics  (152.163.189.236) Tue Mar 18 10:55:22 PM EST 2003
hello

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:55:40 PM EST 2003
Sheila my kids go to public school

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:55:57 PM EST 2003
Im sorry to be asking so many questions. Thank you

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:56:23 PM EST 2003
Robin do they provide the celiac diet or do you?

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:56:23 PM EST 2003
Chat agian Chris good bye

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:56:35 PM EST 2003
hello shel

shel me and son both diabetics  (152.163.189.236) Tue Mar 18 10:57:10 PM EST 2003
hi son was dig. today

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:57:33 PM EST 2003
My daughter has not been diagnosed with celiac however we go in couple of weeks to a gastro spealist.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:58:28 PM EST 2003
shel today with celiac

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 10:58:52 PM EST 2003
Robin are u having a biopsy?

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 10:58:52 PM EST 2003
Sorry to hear that shel.He does have someone close to him that understands and that is something i wish my daughter had.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 11:00:09 PM EST 2003
I have no idea what is going to come out of this visit Sheila Confused 

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 11:02:27 PM EST 2003
You probably wont have it the first visit, but a fair warning: watch for the sugar crazies.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 11:02:57 PM EST 2003
They usually give dextrose in the IV and it is sugar.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 11:03:34 PM EST 2003
shel u still with us?

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 11:03:47 PM EST 2003
What do you mean I have been wondering if there were sighn to watch for. Confused 

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 11:05:15 PM EST 2003
When they do the endoscopy, they put in an IV and they give them dextrose which is sugar water.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 11:07:25 PM EST 2003
I really hope she is free of celiac I can't imagine how to deal with another diet that puts limits on what she eats

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 11:09:30 PM EST 2003
I know this sounds crazy but when they put ashli on the diet i cried all the time because i was scared i would give her something i shouldnt. Now its just a normal routine. Yes i do have to prepare foods by themselves but you will have the hang of it in no time.

Robin mom of 6 year old daughter dx' almost two years now  (64.231.90.127) Tue Mar 18 11:11:23 PM EST 2003
I getting sleepy must check the ask the diabetes team bulletin board and go to bed I really hope your phone call goes well tomomrow stand strong I can't stand when these docs and there secretary's act like your beneath them. Well good night Sheila and Shel hope to chat again sometime.Thanks for the advice.

Sheila P Mom of Ashli, 6, dx'd 6/02 celiac/diabetes  (12.18.109.194) Tue Mar 18 11:13:26 PM EST 2003
I have to go too. Please email me @ Sheila2676@yahoo.com and let me know the results.



                 
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