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No Symptoms, no villous atrophy

Discussion in 'Celiac' started by Diabetikerin, Nov 8, 2011.

  1. Diabetikerin

    Diabetikerin New Member

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    My youngest daughter has been diagnosed with diabetes type 1, as a routine exam they tested for Coeliac Disease, she had the antibodies and a slight inflammation, but never any symptoms what so ever (not even the slightest symptoms) her villi are undamaged and the doctor said we don't need to start a gluten free diet until (if and when) she starts showing symptoms.

    I'm quite unsure as what to do, I would like to keep her on a normal diet for as long as possible, she suffers enough with her diabetes, but don't want to damage her health.

    has anyone out there had similar experience?

    Thanks
     
  2. Caldercup

    Caldercup Approved members

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    My son and I were both totally asymptomic (or so we thought) but his blood tests were literally off-the-charts high. He had the endoscopy and villous atrophy was very clear.

    Once we eliminated gluten from our diets, we both felt so much better and realized that we were, in fact, experiencing symptoms (brain fog, lethargy, slight bowel issues.) Within a few weeks, we both felt amazing.

    Now, if we get even the slightest cross-contamination, we definitely know it, and the syptoms are "classic" bowel distress, headaches, and mental fogginess.


    For you, the question is whether to go GF now or wait for her issues to become pronounced. (I'm assuming you did not get a positive, clinical diagnosis of Celiac.) The touchy thing with T1D is that a gut that is in distress will not absorb carbs predictibly, making blood sugar management more difficult, not to mention that it will affect their growth and how well they thrive. Then there are the long-term risks of untreated Celiac.

    If you don't have a clear-cut dx, then you might want to try a GF diet for a few weeks and see if she suddenly feels much better.

    It's a hard thing to advise on. I know many here find dealing with the GF diet very hard. Personally, I don't. I do miss gluten-containing items, but I'm a cook and did all of our cooking anyway -- and we really were never big restaurant diners. The worst part that we do experience is the social aspect of having Celiac. The parties, the feeling "not normal" in a social situation. But... <shrug> we would rather be at a party with friends, than not at the party, so we "deal."
     
  3. Diabetikerin

    Diabetikerin New Member

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    That's just the thing, her blood sugar management is great, even the doctors were surprised how great her levels were after such a short time, she's thriving brilliantly, no fatigue, full of energy, in fact she's the most alert, active and attentive child I know, her iron levels are super, never has any stomach pains, no muscles pains, no sore bones, no headaches, nothing...

    ...it's all so confusing...:confused:
     
  4. jcanolson

    jcanolson Approved members

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    Maybe take the opportunity to start into the gf diet, and make a slow transition. My oldest had no symptoms...we thought. She was just tested because of her sister's dx. She tested positive in bloodwork and endoscopy. Once she went gf she was amazed at how much better she felt. She hadn't realized that she felt bad, but headaches, focus problems all disappeared.

    It sounds like you are headed that way. Might as well start making changes and see what happens.
     
  5. Caldercup

    Caldercup Approved members

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    My son's BGs were very good during the time we were waiting for the Celiac results (which took about 6 months in our case.) But this was in the early stages of a verrrrry long "honeymoon" that he's only now coming out of. Our problem with BG management was not highs, but lows. We'd carefully measure his food and dose appropriately, but then he'd crash because the gut wouldn't absorb the carbs.

    So, your A1Cs could be fantastic, but the Celiac is throwing a wrench into things. The risk of intestinal cancers are what made me act and press for a clear-cut dx.
     
  6. TheFormerLantusFiend

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    I went gluten free for a five month period at one point just to see if it would help, and it didn't (or maybe a little- it wasn't clear), but I don't regret it. It got me to try a lot of foods that I still eat that I hadn't considered before.

    How high are the antibodies? The hospital where I was diagnosed showed my celiac antibodies as being above the normal limits but not really high and they said sometimes people in the middle range do have celiac and sometimes they don't so we just retested six months later, at which point they were normal (and they were normal again when we tested some years later).
     
  7. Flutterby

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    Since you've just been dx with Diabetes I'd personally wait and ask that the test be redone in 6months. I have heard that the T1 antibodies can interfer with celiac antibodies (I have no idea how, and I'm not exactly sure where I heard this)... Its possible at the time of a t1 dx to get a false celiac dx.

    My dd really didn't have any symptoms, the biggest one was crazy bg's. She had absolutely no villi... The difference now is amazing.
     
  8. Caldercup

    Caldercup Approved members

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    We were told the same thing.

    So we waited about 4 months and redid the blood work. At that point, he was still crazy high in celiac antibodies, so we setup the endoscopy. It did give us about 6 months to get our heads wrapped around the idea and practice of handing T1D before I had to start researching going GF. I think it saved my sanity having that "grace period."

    Now it seems somewhat easy. At our initial T1D dx, is sure as shootin' wasn't easy to contemplate another dx.
     
  9. Hayden'sMom

    Hayden'sMom Approved members

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    I figure, why make things more complicated than you need to for now. I would suggest retesting (blood test) in a few months and see what it says. In the meantime, it may be a good time to experiment with different flours and grains....there are so many wonderful gluten free recipes and meal-ideas that are great no matter if you are celiac or not (and then, if anti-bodies are still high), going "GFREE" may not as difficult a transition.
     
  10. kim5798

    kim5798 Approved members

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    I would just revisit the celiac blood testing in 6 months. A new diabetes dx is a big enough adjustment.
     
  11. Diabetikerin

    Diabetikerin New Member

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    Thanks for all your answers, at the moment I am gathering all the information I can get, making up a folder with gluten free meals and GF baking recipes, so that we will be able to react accordingly when the need be.

    The problem with buying GF product is 1. they are so expensive (OK we will deal with that, her health is more important) and 2. I'm Irish but living in Germany and GF products are hard to come by, no-one here talks or know much about CD.

    Re-testing her in 6 months sounds like a good idea, that's what we will do

    Thanks once again.
     
  12. kim5798

    kim5798 Approved members

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    Back to basics. Fruit, vegetables, meats & rice. You just have to be creative & patient.

    I will say...that before our celiac diagnosis, we had issues with thyroid--hashimotos was the dx they gave...at one point she was taking 2 different medicines. After going gluten free....she has not been on any thyroid meds, and the thyroid labs are all coming out normal range. I don't think this is coincidence.
     
  13. Diabetikerin

    Diabetikerin New Member

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    Hi, haven't been here for a while, been busy getting used to the whole Diabetes thing, so far my daughter is coping very well, her blood sugar levels have been a bit all over thhe place lately, but nothing too serious.

    As far as the Coeliac is concerned, she has not shown any symptoms as of yet, we went for a check-up yesterday, the doctor told us once again not to worry about a gluten free diet just yet

    When she was diagnosed she had:

    IgG - 2.9 u/ml
    IgA - 7.7 u/ml
    tTGA - >128 u/ml (very high from what I gather)

    I don't know if they have changed since then, she will have another antibody test in about 6 months
     
  14. kim5798

    kim5798 Approved members

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    she may not show symptoms, or obvious symptoms of celiac, but if she has antibodies, damage IS being done.
     
  15. TheFormerLantusFiend

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    My understanding is that sometimes, particularly with people who have type 1 diabetes, there can be a false positive. When I google the antibodies, I find a lot of support for that idea. Which is good, because I had oneborderline positive antibody for celiac when I was diagnosed with diabetes, and it went back to normal by the time it was retested.
    For some reason, I had in my head that false positives tended to be fairly mild positives, not the off the scales positive like your daughter has.
     
  16. Caldercup

    Caldercup Approved members

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    Aren't the false positives often showing up after initial T1D diagnosis? I was told at the time of the dx that I should re-test in 3 months, after we had the T1D under better control.

    In our case, the re-test was still extremely high.
     

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