Celiac Absence

[Designer]

Took me 10 years of intense HD and mis-diagnosis of the rash before finally getting a diagnosis when I got a colonoscopy.  Went gluten free for 3 years but that was before gluten-free food was readily available and gradually eased back into food that had gluten, with no rash or adverse results for probably 15 years.  Have had any number of IgA tests during that time with normal results.  Is that possible?  Been having gut issues for the past 9 months or so...Celiac without rash? 

[Scott Adams]

Were you officially diagnosed with celiac disease at the time of your colonoscopy? If so, they must also have done an endoscopy, is that correct? I ask because celiac disease cannot be diagnosed with a colonoscopy. Did you also have a celiac disease blood panel done? 

If you are eating gluten now it would be best to get a blood test done for celiac disease, as you need to be eating gluten daily for 6-8 weeks before the test.

 

 

[trents]

As Scott said, celiac disease cannot be diagnosed with a colonoscopy because celiac disease is a disease of the small bowel, the upper part of the intestines just below the stomach, whereas a colonoscopy does not go up that far. The first stage of celiac disease diagnosis is usually the blood antibody test. If there are positives in the antibody testing, then an endoscopy with biopsy of the small bowel lining is usually ordered to check for damage to the small bowel lining.

[Designer]

It was coincidentally diagnosed during the colonoscopy because of the rash that covered my butt and the fact that I was severely anemic.  The GI ordered the appropriate blood test for the diagnosis and also did the endoscopy.  The question still remains, how can my IgA number have been so high and now are low normal with me resuming eating gluten. 

[trents]

We have had several reports like yours over the years of those who have resumed gluten consumption with no apparent reaction after years of being gluten free. But usually, it doesn't last and there is eventual relapse.

[Scott Adams]

It is known that celiac disease can go into remission after someone has been gluten-free for a period of time, but if your diagnosis was correct, the symptoms will return eventually.

[Designer]

At this point, it's been 14 years, with testing on an annual basis.  I'm pushing 83 so as long as that miserable rash doesn't recur (never did have any  obvious gut issues), I'm good.  Just thought it was really strange to go from one end of the spectrum to the other with the blood numbers.

[Scott Adams]

Is there a reason you don't want to be on a gluten-free diet, given that there are lots of health risks associated with eating gluten if you have celiac disease?

[Designer]

As I stated initially, when I was finally diagnosed, gluten free foods were not readily available.  I had to drive 50 miles round trip for a loaf of bread that couldn't even be sliced because of cross contamination.  Some of the food was as tasteless as eating the box.  Items like pretzels were more than 100% more costly, when I could find them.  Others had significantly more calories.  By the time Celiac became the disease of the month and gluten-free food came to local grocery outlets, I had discovered that I had no adverse reaction to eating gluten and blood tests confirmed it.  At my age, I am not a prolific eater and weeding out all the hidden gluten products and finding substitutes is not on my hit parade.  If it again becomes an issue, at least I am well acquainted of what to and not eat.  I was just curious as to whether there was such a thing as latent celiac, given my history.

[Scott Adams]

Many people with celiac disease do not have symptoms, however, their health risks are still the same as those who do have symptoms, so the recommended gluten-free diet for life is the same. In your case I'd still recommend getting an annual celiac disease blood panel done just in case, and perhaps at least one more endoscopy just to make sure your villi have healed.

[Designer]

Thank you!