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Not Sure If It's Celiac, But...


soupmonger

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soupmonger Newbie

So I have had allergies, asthma and eczema my whole life, but up until the last couple of years they had not been bothering me. Early 2008 I started feeling dizzy a lot, had some unexplained weight loss, and started to develop joint pain and became tired all the time. Then in 2009 my asthma came back full force like it has not been since I was 5 or so. I did not think it could have anything to do with food allergies because i did not get sick immediately after eating, but then about a week ago I read that with gluten allergy the reaction could be hours after consumption or even later.

Since I realized most of my symptoms COULD be explained by gluten allergy (I even took b-12 supplements in the past for brittle nails and hair, dizziness, cognitive problems and tingling in my extremities) I decided to try a gluten free diet. Already my asthma has been much less severe and I feel a lot more energetic and have even been more regular with my bowel movements. In any case I will continue with the gluten-free thing as it seems to be giving me really good results. I am not going to get any kind of testing as I do not have medical insurance and have low confidence in doctors anyway. I just want to see what others who HAVE been diagnosed might think, whether my situation rings true for celiac disease or just gluten allergy in general. Thanks!


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eatmeat4good Enthusiast

Sounds exactly like my son. His asthma cleared up in a few weeks after going gluten free. He has had that all his life. His ecxema is going away but slowly after 6 months gluten free. That takes a while to heal. And the fatigue and depression are gone too. I never had him tested. I bribed him to go gluten free and the first time he cheated and ate pizza..he got really sick with asthma attack and belly ache and fever like he really had the flu...had to take him to the ER to get a breathing tx, but that is the last one he had....He is firmly gluten free now, with no encouragement from me. His belly and lungs tell him right away if he is glutened and he sleeps for like 20 hours straight. I think you are onto something. Hang onto it too! If testing isn't important to you then it isn't important. The only thing important is to get yourself healthy and well. I just wanted to share since your symptoms are so exactly like my son's. It is amazing all the destruction gluten does to a body.

txplowgirl Enthusiast

Hi Soupmonger, My asthma went away after completely eliminating gluten and dairy. It took about 6 months for it to go away and I havn't had an asthma attack since.

Good luck

mushroom Proficient

Really, the most accurate testing you can have (although most doctors don't see it this way - placebo effect :P ) is response to the diet. If not eating gluten makes you feel better, don't eat it. Congratulations on being proactive and figuring things out for yourself. Good luck on asthma remission. :)

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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