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Cam's Mom

A Question For Type 1 Diabetics With Celiac

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My daughter was diagnosed with both type 1 diabetes and celiac about a year and a half ago. We have had the normal learning curve with going gluten-free ike everyone else but have eliminated 99.9999% of all possible sources from her diet. She is feeling well, growing and maintaining excellent blood sugar control. So, that's all good. . . diet is fine, doesn't mind the food at all, we do lots of baking, etc., etc.

BUT - we have had her celiac panel re-run 3 times and each time her tTG remains high (184 at diagnosis, 70+ at 6 months, 80+ at a year and 60+ at 18 months gluten-free - with normal being below 19). So of course the assumption from the docs is that we don't understand the diet. This is infuriating and frustrating but whatever.

So, I have been pondering the following questions that no one has given me an answer to:

1. Can anything other than gluten cause tTG to remain high?

2. How long does it take for it to come down to "normal" range?

3. Do diabetics have a higher anti-body level due to other auto-immune issues (i.e. diabetes)?

I got an e-mail from a parent on another forum saying that her daughter who is also diabetic who has been gluten free for 4 years still has high tTG levels. This got me wondering all over again?!

Can anyone else speak to these issues? Any other diabetics who have tTG levels that never seem to come down? Would love any info anyone has to share.

Thanks!

Barb

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elevated tTG can be seen with diabetes and other inflammatory autoimmune conditions....what I see - is that it appears the levels ARE dropping (from 184 to 60) - and please remember ( and docs too)..that antibodies produced by your body dont just go down to zero immediately. We have memory cells in the immune system and bone marrow that pass on the "antibody knowledge" to future cells. Some "memories" take longer to disappear

(My reference point is animals cause that's what I know best) When a dog is vaccinated for distemper/parvo etc ...we vaccinate yearly - it isnt that the antibodies are suddenly gone after one year - but in the average pet - those levels start to drop off around 18 month - 2yrs after the first vaccine...by vaccinating annually we keep the levels up, thus protecting from disease. BUT the rabies vaccine has a much longer response from pets, with recent information telling us we OVER vaccinate. We now recommend annual booster on distemper combination but rabies can be given every 3 years - and still provide protection.

Okay so I do have a point - I know you didnt ask about rabies <_<

Perhaps tTG antibodies are like rabies - in that it takes longer for the antibodies to disappear from circulation. It isnt that new antibodies are being formed - its that the old ones havent realized they are not needed.

The info I have come across suggests that elevated tTG levels are more common in Type 1 as well as other inflammatory bowel conditions and autoimmune thyroid disease. I do not know what Matt's level was at diagnosis because they did the anti-endomeseal antibodies / confirmed by biopsy.... so no tTG level to compare. Immune response varies from person to person ( and breed to breed in dogs) with some patients having incredibly strong antibody production and others barely produce any.

Kathryn was barely positive on her bloodwork but lots of damage on biopsy.

It sounds like you are very diligent (as is your daughter), you have seen a good response from diet PLUS her excellent blood sugar control is a reliable indicator that her intestine is healthy. If she was not following the diet, you would see unexplained erratic control due to the inflammation in the gut and impaired absorbtion.

I am not a doc, but that's my rambling thoughts!

Sandy

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Sandy,

Thanks for your thoughtful and intelligent reply. It was most appreciated today after a tedious and non-productive visit to the endocrinologist this morning (no different than usual). First we had a fun conversation with a resident who tried to insist that Camryn could not be having a gluten reaction if she does not have diarhea (even though she has never had diarhea in her life in spite of very blunted vili on endoscopy/biopsy). So then the slightly brighter doctor comes in and points out that eratic blood sugar control is not a symptom of gluten exposure. We show her the rash on Camryn's back from gettng glutened and point out that the glutening, the rash and her increase in hypoglycemic events coincide. She points out that is is all just anecdotal coincidence. And she said that one can not have issues with malabsorbtion without diarhea? Really?? Grrrr.

Sorry to fume publicly, just so frustrating. There are many, many medical papers easily found on the internet pointing out that many diabetics present with non-classic sypmptoms of Celiac or completely asymptomatic and it is also well established and published that exposure to gluten (in a celiac diabetic) can cause an increase in hypoglycemic events and erratic blood sugar control.

Anyway, thanks again for your excellent explanation of anti-body production!

Barb

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Maybe my pediatric endo should talk to yours -cause neither of my children had diarrhea either and both had significant villi damage. Kathryn's symptoms were stomach ache and constipation if anything / migraines / neckache / backache. Matt had leg pains and stomach aches plus erractic unstable glucose readings despite weighing carbs religiously / following the prescribed meal plan to the letter. We never knew if he was going to be high/low or what. About 6 weeks gluten free -more or less - his readings stabalized and his A1C became normal.

The endo was the first to say (after he was confirmed celaic) - "Well, I think now we know why he has such problems, we should see things stabalize in the next few months once he is gluten free"

The GI was very interested in symptoms of both children because he sees very different symptoms in children than are listed for adults (being diagnosed with celiac). he even said that children rarely present with classic malabsorbtion symptoms (diarrhea and weight loss). iN fact Kathryn was "pot bellied" at diagnosis....made her look fat. It all changed once she went gluten free, she even wears belts now cause her tummy is more normal.

I'd like to whap that resident on the head and flash lights in his eyes and say : "That's what a classic gluten reaction for my daughter"..... the reason I hit you on the head? : : a classic annoyed with the resident mommy reaction" :lol:

Sandy

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I just posted a similar thing in the Kids and Babies forum. We took DD in today for her 3 month check after diagnosis and they did a blood draw to see where her TTGs are now after being gluten free for a while. The main thing she said they will look for is that they are going down and not up, but it's not uncommon for Celiac's TTGs to return to what is considered normal.

Her symptoms prediagnosis would have never led me to think about Celiacs. She seemed to have acid reflux type tummy aches and a lot of headache/sinus problems and "growing pains" in her legs. After her endoscopy she did have quite a bit of villous blunting and TTGs through the roof which is how they diagnosed her.

Now that I know she has Celiacs, I can add up her symptoms and "quirks" as something Celiac related. Yellow poop, long eyelashes, etc. I never would have put those together otherwise.

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My daughter was diagnosed with both type 1 diabetes and celiac about a year and a half ago. We have had the normal learning curve with going gluten-free ike everyone else but have eliminated 99.9999% of all possible sources from her diet. She is feeling well, growing and maintaining excellent blood sugar control. So, that's all good. . . diet is fine, doesn't mind the food at all, we do lots of baking, etc., etc.

BUT - we have had her celiac panel re-run 3 times and each time her tTG remains high (184 at diagnosis, 70+ at 6 months, 80+ at a year and 60+ at 18 months gluten-free - with normal being below 19). So of course the assumption from the docs is that we don't understand the diet. This is infuriating and frustrating but whatever.

So, I have been pondering the following questions that no one has given me an answer to:

1. Can anything other than gluten cause tTG to remain high?

2. How long does it take for it to come down to "normal" range?

3. Do diabetics have a higher anti-body level due to other auto-immune issues (i.e. diabetes)?

I got an e-mail from a parent on another forum saying that her daughter who is also diabetic who has been gluten free for 4 years still has high tTG levels. This got me wondering all over again?!

Can anyone else speak to these issues? Any other diabetics who have tTG levels that never seem to come down? Would love any info anyone has to share.

Thanks!

Barb

Barb.....as others have stated, there are a number of other autoimmune issues that will keep a Ttg high. Type 1 diabetes and autoimmune thyroid disease, which I have. My Ttg was through the roof at diagnosis but I was already hypothyroid by then. I had my good doctor (non-HMO) run a thyroid antibody and it's supposed to be under 40, for the lab I went through. My original, pre-diagnosis of celiac disease number was over 1200, which alarmed the hell out of the doctor. I switched thyroid meds and it came down but not in the normal range. Then I got sick and was diagnosed with celiac disease and after 2 years gluten-free, it has come down to the high 70 range....I still have some work to do but it's a hell of a lot better than 1200!

I would suspect that for someone with Type 1 diabetes, it will take a while for it to come down. Diabetes is harder to control than thyroid so be patient. And as for the doctor saying you haven't got the diet right....I doubt it. You have to get it right with these 2 problems and it sounds like you're doing a good job. Give it a while longer before you start to get worried about it. Good luck!

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