Endoscopy Shows No Evidence Of Celiac...is It Still Possible To Have It?

[Wrigley]

Hi everyone,

I've been having GI problems since April and a variety of other issues involving thrush, fuzzy (yellow tongue), weakness, headaches, redness and pimples on the scalp.

I had a blood test for Celiac Disease which came up as a partial positive. One antibody was high and the other was normal. I then had an endoscopy in July and they biopsied the small intestine. It came back as no evidence of Celiac Disease.

My question is: Is it possible to have Celiac even if an endoscopy shows no evidence?

A couple other things to note:

When this first started a CT scan showed an inflamed colon..colitis. I had a colonoscopy which came out clean. I then had a cystoscopy and that was clean. A upper GI/small bowel X-ray showed only a sliding hiatal hernia (incidental finding).

Any insight would be appreciated.

[aikiducky]

The different explanations I've read about around here: endoscopy looks for damage in the small intestine. That damage doesn't develop overnight. So it is possible that if you haven't been ill for very long, that you just haven't developed enough damage to be seen yet. In that case a repeat endoscopy in a couple years might give a different result.

Another reason could also be that the damage is patchy, and it was simply missed. There is quite a lot of intestine and the scope doesn't really reach all that far.

Of course it's also possible that you really don't have celiac and that there is another explanation for your symptoms. The difficulty is that our GI tract only has a couple of ways of saying that it feels bad, so different GI conditions have similar symptoms.

Pauliina

[mftnchn]

Also from what I have read, some damage is microscopic only, so depends on a good lab technician to read it, too, assuming it is caught in the biopsy selection.

[Wrigley]

Thanks guys. Would you recommend I get the gene test?

[ShayFL]

If you can get your insurance to pay....by all means get the gene test. It is not diagnostic, but another piece to the puzzle. You might be more inclined to try the diet if you have the genes which could result in better health.

In my case...NEG blood...refused biopsy...NEG genes....POS response to the diet.

[Fiddle-Faddle]

It depends on how anxious you are to have an official piece of paper saying you have celiac disease.

If you have other autoimmune issues, such as thyroid, diabetes, rheumatoid arthritis,fibromyalgia, lupus, MS, etc., or if you have GERD (is commonly caused by gluten intolerance), you might want to just try a gluten-free diet and see if your symptoms improve. Gluten intolerance/celiac disease can cause a whole host of other problems. Many people with neuro problems also find that a gluten-free diet helps more than medicine. There is even a recent study indicating that bipolar symptoms can be directly caused by gluten in susceptible individuals (corroborated by members here on this board).

If your symptoms do resolve on a gluten-free diet, I'd say you have just as good an answer as you could get--without the expense of testing and doctor's appointments, and without investing TIME, and without depending on the limited competence of most doctors today, who were not taught about celiac in medical school (until the last couple of years, it was thought of as an extremely rare condition). If they don't, then you'd need to keep looking (and then you ought to research things like Lyme Disease, candida, mercury toxicity, mold sensitivity, etc.).

[mftnchn]

What you need as far as a diagnosis is an individual decision and all decisions are respected here.

Going through the testing involved may find another problem altogether or confirm this as the main problem. A firm diagnosis may make it easier in terms of family members, especially because confirmed celiac in the family means all first degree relatives should be tested.

[happygirl]

Can you get a copy of your bloodwork and post what tests were run, your results, and the reference ranges?

Can you get a copy of your endoscopy report, and post the findings, including how many biopsies were taken?

The answer is, yes, depending on a variety of factors, you could still have Celiac. You could have a non-Celiac gluten problem, or a problem not related at all to Celiac/gluten. Provide us some more information, and hopefully we can give you some more ideas.

Best of luck.