3 years with Celiac, now I appear fine.

[Sharke]

So a bit of background.

Nearly four years ago, I began experiencing intermittent stomach issues, including cramping and constipation. However, what concerned me most was the significant weight loss. Despite being active, the rate at which I was losing weight prompted me to seek medical attention. Prior to noticing the weight loss, I weighed 165 lbs (74.8 kg), but over time, I dropped to 120 lbs (54.4 kg).

After consulting with my doctor, she suggested the possibility of celiac disease or gluten intolerance. She referred me for a gastroscopy, and while the biopsy did not confirm celiac disease, the specialist concluded that it was likely the cause.

Following the diagnosis, I adopted a gluten-free diet. Initially, I occasionally indulged in foods containing wheat, such as take-out, but my decision to commit fully to a gluten-free lifestyle was prompted by a particularly severe reaction after eating pizza. I experienced chest pains, migraines, shooting pains throughout my body, and severe stomach cramping and constipation.

Since then, I adhered to a strict gluten-free diet for over three years, avoiding even trace amounts of gluten. Despite this, I continued to experience ongoing stomach issues and was unable to regain the weight I had lost.

A few months ago, I unknowingly consumed wheat after purchasing a jar of mustard that contained wheat flour—an ingredient I had not previously needed to check. Halfway through my meal, I noticed hives on my arm. Though the hives resolved after about 20 minutes and the stomach discomfort subsided shortly after, I reflected on the fact that hives had never been part of my previous symptoms. This led me to reconsider my diagnosis.

This incident raised the possibility that my symptoms might not be related to celiac disease but could instead be due to a classic wheat allergy. To investigate further, I began experimenting with foods containing barley, which I consumed without any noticeable symptoms. I then tried soup with actual barley, with no adverse reaction. This suggested to me that wheat, specifically, might be the problem rather than gluten or barley.

Encouraged by these results, I tested myself with small amounts of products containing wheat flour and starch, including an entire pop-tart and crackers, and experienced no issues. It's been days since, and I have been eating some wheat products, still with no issues. However, I am still uncertain whether this means that even though I am not experiencing any symptoms, I may still be causing harm to my GI.

I will be consulting with a doctor to undergo allergy testing, but I would greatly appreciate any insights or advice from others who may have experienced similar situations. How should I proceed from here?

 

[RMJ]

Did you have any celiac antibody blood tests? Or just the gastroscopy/biopsy?

[Sharke]

3 hours ago, RMJ said:

Did you have any celiac antibody blood tests? Or just the gastroscopy/biopsy?

Just the blood tests originally, which lead to the biopsy. The original blood tests and what they provided are lost, though I don't recall any hard evidence that it was related to celiac. They found a few polyps, but couldn't link them to celiac or gluten-intolerance.

I have been under my own and my doctor's assumptions this whole time.

[Scott Adams]

It sounds like you've been on quite the journey trying to understand your symptoms and diagnosis. It’s great that you’re planning to consult a doctor for allergy testing, as distinguishing between a wheat allergy, celiac disease, or another gluten-related condition is crucial for moving forward.

The fact that you’ve tolerated barley and wheat products without recent symptoms might suggest something other than celiac disease, but as you noted, the absence of immediate symptoms doesn’t necessarily rule out potential underlying damage, especially if celiac disease is still a possibility. It’s worth discussing whether you should undergo updated testing, such as genetic testing for celiac markers (HLA-DQ2/DQ8), or even revisiting an endoscopy if appropriate.

In the meantime, keep documenting your experiences with food and symptoms—it could provide valuable insights for your healthcare provider. It’s also important to test for other possible causes of your original symptoms, like IBS, food intolerances, or even other autoimmune conditions, to ensure nothing is overlooked. 

[knitty kitty]

@Sharke,

The updated guidelines for a gluten challenge are to eat ten grams of gluten per day for two weeks minimum.  Lesser amounts of gluten (3 grams) don't provoke an immune response strong enough that the antibodies leave the gastrointestinal tract and get into the blood where they can be measured in tTg blood tests.  

Have no doubt that the antibodies made in the small intestine are doing damage there, even if you don't suffer severe symptoms, yet.

Did you react to barley prior to going gluten free?

Have you been checked for chronic autoimmune gastritis which is another autoimmune disease that sometimes occurs with Celiac Disease?

Have you been checked for nutritional deficiencies?  Thiamine deficiency (Gastrointestinal Beriberi) can cause constipation and/or diarrhea, abdominal pain, and weight loss.  

Thiamine Deficiency Disorders

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/