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Am I Celiac? Negative Blood Test


Oats

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KendraAnn Newbie

I am in need of desperate help! For several yrs now I have been having what I now consider "reactions" to gluten. I never thought I could have Celiacs.

After eating anything with gluten in it I experience:

Abdominal bloating (to the point that I look about 6-7 months pregnant)

Abdominal pain (severe enough that I went to the ER once after a bowl of special K cereal)

Awful gas that can clear a room in seconds

Pure liquid diarrhea ( resembles turning the faucet on. Thats how liquid it is)

Itchy hands to the point Id like to chop them off

Then for a few days after Ill be exhausted, have joint pain, and headaches. I have awful mood swings. No sex drive (my poor husband), oil like substance on the surface of the after a normal bm and one of the more frustrating symptoms is no matter how much I eat, Im always hungry!!!

I tracked my food in a journal and it all points to gluten. If I eat the gluten-free version of something Im Ok.

I recently went to the dr and had blood work done. I had Tissue transglutaminase IGA, and IGA Immunoglobulin A done both were neg!!! I have the biopsy tomorrow.

I thought for sure it would be positive :( i feel like people think im making things up bc I "appear healthy".

Any thoughts???

Hi HGMama, I too had negative blood work, but I had a postive biopsy. I have been gluten free for 13 days now and overall am feeling better. "Normal" bowel movements (haven't had that in over 10 years!), basically no acid reflux, but I have been having gluten withdrawals resulting in headaches for all 13 of these days so far. I've read that it might take 2-3 weeks for the withdrawals to subside. What were the results of your biopsy? Good luck!

  • 11 months later...

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Oats Newbie

Hello! It's been a long time! I am now as good as symptom free.

After going gluten free for a while (and getting better), I went back to eating wheat & co. I didn't react. I think that maybe any stomach irritation would make gluten hard to digest! 

 

Right now, I only occasionally get acid reflux, mostly after eating fatty food (which also gives me stomach aches at times!)

My period went normal after starting the pill at my doctors request. She also found an ovarian cyst, which may have wrecked havoc with my hormones (which were a little out of balance - to little of this, too much of that)

 

 

Also, the doctor found out I had mononucleosis antibodies, which suggests that my stomach problems could have been long lasting after effects of that.

 

I have some friends who also got better from not eating gluten, but then did not get worse again from eating it again. I think that ruling out gluten completely might often not be necessary even if it makes your symptoms ease after a week or two, because it would most likely do that with any stomach problem! 

 

Thanks for your support, and good luck!

foam Apprentice

I've got the feeling you will get sick again eventually on gluten. I'd just do the gene test and if you have DQ2 then don't eat gluten ever again. That's the only way to be sure.

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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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