GI says Celiac but blood work negative

[Tree75]

Hi- I'm looking for advice. Here's my story...

In June, I suddenly had no energy. I went from running a hilly 1/2 marathon one weekend to not being able to run a mile the next weekend (literally). I battled that extreme fatigue for a month or 2 until I finally promised my spouse I would see a doc about it. (in addition to the fatigue, I was very bloated and I gained about 25 pounds... I assumed the weight gain was because my exercise training schedule shifted so radically).

In August, I went to the doc who diagnosed me with anemia. I was told my iron was at a 4...she didn't believe supplements or diet changes would help me. She set me up for iron infusions instead. And she wanted me to get an EGD and colonoscopy to rule out internal bleeding.

I just had the EGD and colonoscopy last week. While I was in recovery, the GI doc came and told my spouse and I that he was confident I had Celiac based on the pictures he took (he showed us... my intestines looked wrinkled and flat). I asked him if anything else could explain the way my intestines looked and his response was, "I highly doubt it. This is a classic example of what Celiac looks like. But we'll see what the blood work says".

Well, I just got back the results of the blood work and I tested negative for celiac. And that's where things are left right now. I have a follow up with the GI doc in 3 weeks, but in the meantime my spouse (who is uber-concerned about me) is insisting I eat gluten-free.

I guess I'm curious if this situation has happened to anyone else (meaning your GI doc says Celiac but the blood work is negative)? Other than the iron issue, I've felt fine. I don't feel sick when I eat gluten and I don't have the symptoms that a lot of people describe. Big picture though...I'm worried that the anemia will continue and I'm worried why my intestines look the way they do. It's got me confused because the GI doc was so confident that it was Celiac, and in my experience, docs tend to be reluctant to confidently say what's going on, especially before the blood work comes in.

[cyclinglady]

Welcome!

Exactly what blood tests were taken?  Was it a complete celiac panel?   Often, doctors order just the TTG.  For the past decade, the TTG was a great test for screening (cheap and effective), but they found that it did not catch all celiacs (like me who tests negative to the TTG tests).  Only one of the tests needs to be positive -- not all! 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA (in celiac disease testing this is a control test)

 

How many biopsies were taken?  Did you receive a pathologist's report in addition to your GI's visual assessment?  

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

Anemia is now one of the most common symptoms of celiac disease.  If you are diagnosed with celiac disease, a few months of a gluten free diet and some gluten-free iron supplements should increase your ferritin levels (iron stores).  

 

Other things can can cause intestinal damage that is comparable to celiac disease.  Make sure that your doctor ordered the complete panel.  Some people do test negative to all the celiac blood tests.  In that case a trial gluten-free diet is usually suggested.  

 

Weird that you were able to run the 1/2 marathon, but that is what happened to me.  Funny how your body can adapt and push on when you have a goal!  

 

So, based on what you wrote, I am not sure if full testing (blood and biopsies) was done.  Please verify by obtaining copies of all your lab results.    If the testing was not complete, ask for complete testing. Consider another opinion.      Keep eating gluten until all testing (or a second GI consult) is complete.  

[Tree75]

Thanks for the quick reply! This is weighing heavily on my mind and it's hard to wait 3 weeks for the follow up appointments.

Well, I just went into my records to find the blood work results and a message popped up that said my biopsy results were in and they were negative for celiac. So, I guess the cause of what I'm experiencing isn't celiac but something else. So, I guess I'll continue my search for answers.

 

Thanks for all your help!

 

[squirmingitch]

Reading this, it didn't sound like the GI doc took biopsies until I just read your last post. I'm so glad he did! I couldn't understand why he would say it looked like celiac but not take biopsies.

Okay, so now you're looking for what else could cause this. Persist, persist, persist!

I wish you the best & hope you find the answer very soon. When you do, would you please try to remember to come back & let us know? Even though you aren't celiac we still care and it could also help others who have the same thing happen.