Labs not going down

[AAC]

Hello,

I have been gluten free for over 3 1/2 years after getting blood tests done. My original levels were EMA positive 1:20, TTG negative, IGG, IGA  negative. I never had a biopsy as I wanted to avoid it and my doctor was willing to diagnose without it. However, I have not been able to get my labs normalized. My Gastro has now retired and my new doctor wants to do a scope. I just had labs done again and my EMA is still 1:10, TTG is now borderline positive at 6. EMA has been at this level for 2 years now. I was so frustrated that I went on the Fasano diet for 6 months (only fresh meat, fruit, veg, cheeze, oil, salt). I have relaxed the diet slightly now but still am very careful--don't eat in restaurants, whole foods, no grains except occasional certified white rice, buy beans from Edison grainery, sort, rinse, very careful with just a few processed products. Mostly dairy free with occasional cheese (seems okay), soy, corn, sugar, free. I mostly eat meat, seafood, vegetables, fruit, olive and coconut oil. I don't have a shared kitchen and prepare all my own food at home. This does not seem to be making much difference. I can't tolerate many foods still and feel like I am slowly getting worse. 

 My new doctor isn't sure I have celiac. He says my labs may be a false positive or I may have refractory celiac. I had a calprotectin lab which came back elevated at 80 but not high enough for IBD yet. My mom had crones and I am concerned I may be developing this.

I have many problems like low energy, brain fog, low vitamin levels, headaches, constipation, diarrhea (occasional). I am also pregnant and my stomach problems are worse than ever like terrible gas, bloating, very slow motility, stomach pain,. yeast in urine. I know that some of this is normal for pregnancy but I have had other kids and never had such bad symptoms. My stomach problems and health have gone downhill since starting the gluten free diet.

My questions: Isn't the EMA lab very specific for celiac? Doesn't this mean I probably have this? I don't see the point of a scope as even if there was no obvious damage I would still need to be gluten free in case the labs were correct. Has anyone ever heard of a false positive for EMA? My gastro doesn't want to test further without a scope.

 I want to at least take vitamins but worry about cross contamination and my other intolerances (corn, tapiocca) in vitamins. 

 

[NNowak]

The EGD is not bad. I’d highly recommend it so you can get some answers. You should get a colonoscopy, too. Especially with history of Crohns. My sister dealt with refractory sprue, and I can tell you it takes years to heal from. If you are dealing with another issue, your Celiac will kick in due to the stress your body is going through. Pregnancy is definitely a stressor on top of what you already are dealing with. My fourth full term pregnancy I struggled with HELLP Syndrome, which I now know can be triggered by a B12 deficiency. 13 years later I was able to convince my doctor to run a few tests for vitamin deficiencies. The deficiency was so bad that I had neurological issues.  Keep pushing for answers and bite the bullet with the scope - it’s good to know what you’re dealing with, or get a clean bill of health. Sounds like you’re doing everything right and have run out of options. Feel better!

[cyclinglady]

Hi! 

From my research, celiac disease blood testing was meant to help diagnosis celiac disease and not to monitor diet.  But doctors repeat blood tests because it is the only non-evasive “tool-in-the-toolbox” for dietary compliance.

About two years ago, I had a gluten exposure after a tooth I infection, the flu and a cold all within six weeks.  I was a wreak.  My DGP IgA antibodies were off the charts (higher than when I was diagnosed (biopsies).  I never had had a positive EMA or TTG test.  I am not IgA deficient.  After that exposure, I got my usual gluten exposure symptoms plus, a few new ones (GERD and hives).  My allergist said the hives were autoimmune-related (Hashimoto’s) and my GI wanted to re-scope.  I refused.  I trialed the Fasano diet.  It did not work.  I had the repeat scope which revealed a completely healed small intestine.  But it found Chronic Autoimmune Gastritis.  That what was giving problems long after I healed from a celiac disease flare -up.  I was doing everything right concerning the gluten-free diet.  

You might have another issue going on.  I learned that not everything is due to celiac disease.  

[GFinDC]

Hi,

Since you have been gluten-free for 3 1.2 years you would need to do a gluten challenge to get accurate celiac disease test results.  A gluten challenge means eating at least some gluten every day for 2 weeks before the endoscopy or 12 weeks before the blood antibodies.  I would not recommend a gluten challenge while you are pregnant.

Developing additional food intolerances is not unusual.  Many of us have them.  The way to find them is to do an elimination diet.

Have you a significant other that eats gluten?  They would need to brush their teeth and gargle before kissing you.  It sounds like you are doing a pretty good job of eating right for celiac diease.  But if you have developed an additional food intolerance or several, you will need to get those foods out of your diet also.

Edited November 22, 2019 by GFinDC