Sudden onset profuse watery diarrhea after travel. Celiac?

[WBruce]

Anybody else ever have this type of onset? Profuse watery diarrhea, sudden onset following trip to middle east. Every infectious agent known was tested for, and multiple antibiotics and anti-parasitics taken without effect. Never had abdominal pain. Then:

 

6/16/2023. Celiac serologies:

                        Anti-gliadin IgA           154.2 ( ref range < 15)

                        Anti-TTG IgA                41.8 ( ref range < 15)

                        Anti-endomysial IgA    NOT PERFORMED

 

7/7/2023         Endoscopy with small bowel biopsies, all showing “sprue-like changes”

 

7/13/2023       Celiac serologies (2 weeks on gluten-CONTAINING diet):

                        Anti-gliadin IgA           114.3 ( ref range < 15)

                        Anti-TTG IgA                40.8 ( ref range < 15)

                        Anti-endomysial IgA    Negative

Now 3 weeks gluten-free without any improvement. Has anyone had celiac symptoms like this? Thanks much!

 

Bruce

[Scott Adams]

Welcome to the forum, and your experience sounds very similar to mine. In my youth I did have vague symptoms like unexplained rashes, but no noticeable gut issues. When I was in college I went on a backpacking trip to Europe with friends and got what I thought was a severe case of food poisoning which took about a week to recover from, although I never fully recovered from it. It took a few years after that of constantly going to the doctor before I finally got diagnosed, but whatever happened in Europe was definitely the trigger event for my celiac disease to go into full-blown mode.

You have several strongly positive blood tests, so your results indicate that you most certainly do have it. Did they schedule an endoscopy to confirm your diagnosis? That is the normal next step, but some people with high results get diagnosed with just the blood tests. If you need more tests then you need to keep eating gluten until they are finished.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

   This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

 

 

[trents]

Biopsy has been done according to first post: "7/7/2023         Endoscopy with small bowel biopsies, all showing “sprue-like changes” So, there is no question about whether or not OP has celaic disease.

 

WBruce, I would suspect you got "glutened" inadvertently. There's a real learning curve involved in consistently avoiding gluten. It's included in so many foods that you would never expect to find wheat, barley or rye products in: Soy suace, almost all canned foods soups, some pancake syrups, some chocolate syrups, meds and supplements, oral hygiene products, etc. Recent studies have shown that most people who believe they are eating gluten free are actually eating lower gluten diets by not gluten free. These studies show that this is particularly true of those who still  dine out as you have little control of how food is prepared and handled back in the kitchen. Cross contamination is rampant in eatery kitchens.

It is also possible that you have develop intolerance to other foods apart from gluten like dairy or oats, whose proteins are similar to that of gluten. This is common in the celiac community.

 

Edited July 29, 2023 by trents

[WBruce]

Thanks so much to Scott and Trents for great info and rapid response! my daughter has celiac so I'm pretty good at avoiding gluten pitfalls. Looks like it just might take some time. I'm also avoiding dairy for what it's worth.

[WBruce]

Also curious about:

length of time to improvement on gluten free diet. I am almost 3 weeks gluten free and absolutely zero improvement

Age at onset. I'm 71, which seems relatively old

 

Thanks!

[trents]

Celiac disease can onset at any age. It takes not only the genes but a stressful triggering event, such as a viral infection, for the genes to be turned on or expressed. If you diarrhea is caused by celiac disease, you should be improving by now I would think.

[WBruce]

Thank you. Wish there were at least some improvement

[trents]

You did not respond to my earlier suggestion of look at other foods that could be causing this such as oats and dairy which have proteins similar to gluten and cause similar reactions to gluten in a subset of celiacs.

 

 

[Russ H]

7 hours ago, WBruce said:

Also curious about:

length of time to improvement on gluten free diet. I am almost 3 weeks gluten free and absolutely zero improvement

Age at onset. I'm 71, which seems relatively old

 

Thanks!

Age of diagnosis, not onset. You may have had it for decades as a smouldering disease. In the UK, coeliac disease is most commonly diagnosed between the ages of 40 and 60 - 70 is not that much of an outlier. You might try excluding oats and dairy products until your gut has healed. They can exacerbate symptoms in active disease. Once your gut has healed and your reactive antibody levels have returned to the normal range, you can usually reintroduce these without problem (but not always). It can take a couple of years to fully recover but you should begin to notice an improvement within a month or so. Children recover much more quickly than adults.

[Russ H]

6 hours ago, trents said:

You did not respond to my earlier suggestion of look at other foods that could be causing this such as oats and dairy which have proteins similar to gluten and cause similar reactions to gluten in a subset of celiacs.

 

 

Sorry, missed this response.

[trents]

Russ, I was referring to the OP not responding to my suggestion about cutting out oats and dairy. I think the timing of our posts was confusing in that regard.

Also, we both know that typically it takes years for celiac disease to get diagnosed after onset, it is not always the case and we cannot assume that to be in individual cases without some data concerning how long symptoms were present before diagnosis.

[Russ H]

Sorry, I missed your post as hadn't scrolled completely down.

I am biased by my own experience because I think I had coeliac disease for more than 40 years before I was diagnosed. The fact that blood serum screening shows that most people with coeliac disease are not diagnosed supports my intuition. I have tried to find research relating to period before diagnosis without success. Twin studies suggest to me that it is largely genetic but with an external factor - perhaps gluten exposure combined with an infection.

 

[WBruce]

Thanks for the suggestions. Have been avoiding dairy and oats as well. Feel pretty confidant I am as gluten free as anyone can get.