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Gluten Free 2 Years Still Having Issues


Jen G

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Jen G Newbie

I was diagnosed 2 years ago this July and after looking back on everything I probably had symptoms for at least 5 years before I was diagnosed. I have been on a strict gluten-free diet with no cross contamination. I don't go to restaurants and I prepare my own food at home. I am very careful about checking lables on everything right down to hand lotion. 2 years ago I had almost every symptom on the list except for seizures or thyroid problems. Since I've been on a gluten-free diet my symptoms seemed to have gotten better, everything seemed to have healed so I don't have digestive issues anymore and I've been fairly healthy. But over the last few weeks it seems that some symptoms have returned. I am very tired all the time again. My muscles are cramping, twitching and aching. My blood pressure has gone up again. My skin hurts. I am bloated and retaining water. And my hair is falling out and very dry/brittle no matter what I do to it. I do take extra vitamins (Multi, B Complex and D), but I just had bloodwork done yesterday to test levels. Is it possible that even after 2 years I could have issues again or still with absorption? If not what are other possible issues? Has anyone else gone through this? Thank you in advance for your help.


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kareng Grand Master

Possible it has nothing to do with Celiac?  Check your thyroid? 

dilettantesteph Collaborator

Definitely have a work up to see if it is unrelated.  If celiac, did you make any changes to your diet recently?  You say you prepare your food at home.  It is produce and unprocessed meats?  If eating products, could processing have changed in any of them to add cc chances?  Do you eat gluten-free grains?  There have been studies showing that they can have cc issues.  You can try eliminating suspect items one at a time to see if anything helps.  Some of us get sensitive to lower levels of cc as time goes on.   I hope that you feel better soon.

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    • 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. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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