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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
      Your doctor may or may not be well-informed about the issue you raise so I would not agree that he/she would necessarily be the best person to rely on for a good answer. The question actually raises two issues.  The first issue has to do with cross contamination and individual sensitivity as dublin55 alluded to. Oats and wheat are both cereal grains that are typically grown in the same areas, transported in the same trucks, stored in the same silos and processed on the same equipment. So, there is usually significant CC (Cross Contamination). With gluten free oats, there is some effort to separate these processes that would otherwise cause significant CC and "gluten free" oats should meet the FDA requirement of not exceeding 20 ppm of gluten. But this 22 ppm standard is not strict enough for more sensitive celiacs. "Certified gluten free" oats (and other food products are held to a stricter standard, that being not exceeding 10 ppm. But even that is too much gluten for some super sensitive celiacs and will cause a reaction. The second issue with oats has nothing to do with gluten per se but with the protein found in oats called "avenin". Avenin has a structure similar enough to gluten to cause a reaction in some celiacs. This is called "cross reaction" not to be confused with "cross contamination" discussed in the previous paragraph. So, for whatever reason, whether cross contamination or cross reaction, it is estimated that about 10% of celiacs react to oats.
    • dublin555
      Karen, that sounds really tough. You must find both RA management and your new gut problems extremely irritating to handle at once. Together with your pain relief you still experience ongoing bloating complications that drag on without a resolution. Of course visiting a doctor to obtain a proper celiac diagnostic evaluation becomes necessary when no formal diagnosis has been received. Your journey toward recovery has been lengthy yet it brings comfort to notice your progress during this time. This support group offers you valuable help because there are people experiencing the same concerns with you. Working through your issues will be easier.
    • dublin555
      Yeah, it’s tricky. I’ve seen a lot of mixed opinions too. Some folks can tolerate certified gluten-free oats without a problem, but others with celiac still react. Honestly, it really depends on your sensitivity. Your doctor would be the best person to ask about your specific situation.
    • Matt13
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    • robingfellow
      I can't edit my posts, but I forgot to note as well: I also had low iron and vitamin d according to my blood tests, despite already taking supplements for each
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