Not officially diagnosed but doctor doesn’t want me to do the gluten challenge, advice?

[Nattific]

Hello, so back when I was a senior in high school (2020) I had about 8 months where I was completely unable to function, I was vomiting, lost over 20 pounds, had diarrhea and was really sick. This happened after I was hospitalized with cat scratch fever and cytomegalovirus. I have family members on both sides of my family with celiac and they told me my symptoms align really closely with what they experienced. I decided to cut out gluten and go gluten free.  It really helped, I was nearly normal again by 6 months. By the time I could finally see a doctor in person again I was already strictly gluten free for over a year. This doctor ran the blood tests, told me they were negative and that I just have a gluten intolerance. I assumed that was correct and stopped eating like I had an allergy as I assumed it was just an intolerance and that cross contamination would be fine. I would never eat gluten outright but I wasn’t careful at restaurants or even at home. Well now 5 years later and I’m back to being just as sick as I was back then (I’ve had lots of exposures that are my fault as I wasn’t taking it seriously because I didn’t think it was celiac). I was having a really severe reaction so I went to my doctor. I have a new amazing doctor who ran all my labs on Monday. My lipase is elevated, my liver enzymes are through the roof, all of my vitamins and electrolytes are low, and I’ve dropped 10 pounds since my last appointment. My doctor basically said all of this strongly points to a celiac diagnosis, but she doesn’t think it will come up on a blood test as I haven’t eaten anything with gluten directly in years. She told me she doesn’t want to do the gluten challenge (6-8 weeks of eating gluten) because of the signs that is damaging my other organs and she just put it in my chart as a severe gluten allergy. I’m just confirming this means I have celiac correct? 
 

thank you for all your help

Nate

[Scott Adams]

It sounds like you’ve been through an incredibly difficult journey with your health, and it’s understandable to want clarity about whether you have celiac disease. While your doctor hasn’t officially diagnosed you with celiac (due to avoiding the gluten challenge), her decision to label it as a "severe gluten allergy" in your chart strongly suggests she believes gluten is causing systemic harm—consistent with celiac. Your family history, symptom improvement on a gluten-free diet, and current lab results (elevated lipase, liver enzymes, nutrient deficiencies) all point in that direction. Many doctors prioritize patient well-being over diagnostic formalities when reintroducing gluten could be dangerous, which seems to be the case here. For peace of mind, you could ask about genetic testing (HLA-DQ2/DQ8 genes), but the most important step is treating this as celiac-level serious: strict avoidance of gluten and cross-contamination. Your body’s repeated reactions—especially the organ involvement—are telling you what it needs.

Also, there are downsides to having an official diagnosis, for example needing to list it as a disability on job applications, higher life insurance rates, and the possibility of higher health insurance rates.

[trents]

Welcome to the forum, @Nattific!

First, let's deal with terminology which can be very confusing because there is a great deal of inconsistency in how the terms associated with gluten disorders are used by lay people and even in the medical/scientific literature as well.

Having said that, it is probably more accurate to use the term "gluten intolerance" as a general term referring to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). The term "gluten sensitive", therefore, is probably best used to refer to NCGS. Celiac disease is not an allergy. It is an autoimmune disorder whereby the consumption of gluten causes an immune system response in the lining of the small bowel resulting in inflammation and damage to that lining, what we call the "villi". Over time, this damage causes sufficient atrophy of the small bowel lining to actually impair nutrient absorption, often resulting in other medical issues that are nutrient deficiency related. 

NCGS is not an autoimmune reaction, nor is it an allergy. We know less about the exact mechanism of NCGS than we do about celiac disease. Some experts feel that NCGS can transition into celiac disease. NCGS is 10x more common than is celiac disease. They share many of the same GI symptoms and, since there are not yet any methods to directly test for NCGS, celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS.

It is also possible to have an allergy to gluten just like you might have an allergy to peanuts, soy or dairy or any other food protein. But that falls outside of the realm of gluten intolerance. What is puzzling to me is that your physician chose to label your problems with gluten as a "severe gluten allergy" which, technically speaking, it is not and can be misleading to other medical providers who may review your chart. I would have a conversation with your physician about that.

About 18% of celiacs experience elevated liver enzymes. I was one of those and it was what eventually, after 13 years, led to my celiac diagnosis. Within a few months of going gluten free the liver enzymes normalized. But they were never "off the charts" as were yours.

I don't disagree with your physician's advice to not attempt a "gluten challenge" for the purpose of further blood antibody testing. Doing a gluten challenge doesn't sound like a wise thing to do in view of the significant liver and pancreas inflammation you are experiencing. However, let me suggest you consider pursuing a endoscopy with biopsy of the small bowel to check for damage to the villous lining. If you are experiencing, as you mention, vitamin deficiencies and electrolyte imbalance, I would think this would be a result of a compromised small bowel villous lining, the place where all nutrients are absorbed in the GI track. You would need to continue to allow some gluten into your diet until the procedure is done for the results to be accurate, however. So, if you could get that scheduled fairly quickly, it might be a viable option.

The other option is just to commit 100% to eating gluten free right away. I mean get serious about it, and see if your symptoms and lab work improve. I will include a link to help you get off on the right foot. I really have no doubt that you have celiac disease but it would be preferrable to have an official diagnosis going forward, both from the standpoint of receiving full cooperation from the medical community and for your own resolve in staying on the gluten free bandwagon.

Finally, don't rule out the possibility that something else in addition to gluten intolerance is going on. Don't assume that is the whole problem. Make sure you get thoroughly checked for other medical issues.

 

Edited May 21 by trents