My celiac is gone?

Posted by lavendercottage @lavendercottage, Mar 27, 2024

I tested positive for celiac years ago. I haven’t had any gluten in 9+ years. I asked my doctor to refer me to a gastroenterologist because I’ve been having some symptoms and he said he wanted to do a full blood panel first. He didn’t refer me to a gastroenterologist because I “have no celiac disease” his words not mine.

I am having symptoms of a stomach issue so I guess I’m confused. It wasn’t a gluten challenge test. He knows i haven’t had gluten in a long time. I thought he was trying to figure out if I had been exposed to gluten, but when he said I don’t have celiac disease at all, I started to worry that I can’t trust him.

It’s hard to switch doctors here, and I had no doctor for more than 7 years. I thought having a doctor would mean having an advocate who could interpret findings from various specialists to help me. I haven’t had that experience.

I really don’t know what to do anymore, other than de-roster myself and search for another 7 years. I’m not sure I’ll survive that long.

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kayabbott | @kayabbott | Mar 29, 2024

In reply to @barbbielor "I learned I have celiac by genetic testing. Have you had that done?" + (show)

Genetic testing involves looking for the (human leukocyte antigen) HLA-DQ2 and/or DQ8 haplotypes (I have HLA-DQ8 0302). Without DQ2 or DQ8 there is only a rare chance that they have celiac; they could have gluten intolerance or some other complication. About 1% of the world's population has celiac (mostly undiagnosed, and some areas with higher percentages). More than 30% of the US population has HLA DQ2 and/or DQ8 and several percent of those folk develop celiac. Doctors tend not to believe you have celiac unless you have positive celiac panel bloodwork and preferably small intestine biopsy. Irksome that genetics and symptoms are not enough for some doctors. https://www.sciencedirect.com/topics/nursing-and-health-professions/hla-dq2-antigen https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9331400/

barbbielor | @barbbielor | Mar 29, 2024

I first discovered lactose intolerance. It was years later I went on a sugar free yeast free diet and lost weight and felt so.much better. That experience led me to getting genetic testing done. Thanks for info.

bayhorse | @bayhorse | Mar 30, 2024

In reply to @kayabbott "Thank you for replying to her and my comments. I add references because they are helpful..." + (show)

Kay Abbott, The gastroenterologist who diagnosed my celiac disease said exactly the same thing your internist did! Very little time is spent on celiac sprue in med school. I was misdiagnosed for years and was very ill by the time I found a doctor who figured out what was going on.

cyn88 | @cyn88 | Mar 30, 2024

I was diagnosed with celiac 17 years ago. It’s genetic. The gold standard diagnosis is a biopsy of the small intestine. Any doctor who tells you that you don’t have it anymore because you haven’t ingested gluten for a period of time, or you are presently asymptomatic, is grossly incorrect, reckless & irresponsible. It’s also possible to have refractory celiac disease (gut damage despite practicing a gluten free diet). There are many other autoimmune diseases that are caused directly or indirectly by celiac: inflammatory bowel disease is one of them (collagenous or lymphocytic colitis are examples). Find a reputable GI doctor who will monitor you, even if you still adhere to a gluten-free diet. I have tests every year for this reason, even though I adhere to a strict gluten-free diet.

bayhorse | @bayhorse | Mar 30, 2024

Celiac sprue (aka celiac disease) is an autoimmune condition and does not go away. You need to see a gastroenterologist.

Funcountess | @funcountess | Mar 30, 2024

Some doctors are Jack of all trades, and masters of none.

mlledaffodil | @mlledaffodil | May 19 12:46am

I have encountered several docs who doubt or lack education on celiac—sorry you were treated like you don’t know your own body. It’s up to you whether you trust him on basic care, but you certainly need to establish a relationship with a good gastroenterologist to deal with your ongoing issues, whether that is related to celiac or not

dmmeyers62 | @dmmeyers62 | May 19 10:11am

I read in a book that they are now saying that the 2 gene's for celiac are not the only gene's involved. They are finding several other gene's that a person with celiac can have. (10 other so far) I think that's why a Dr's are not checking. I was told that because my celiac is so bad and had probably all my life that it could have messed up my DNA so test wouldn't be accurate. I hope they take a better interest in celiac disease and these doctors get a better understanding of the disease. I know I had a tough time getting a diagnosis even with my antibodies being in the 500's and a positive biopsy for celiac and DH rash. Still get asked if I was tested. I went to Mayo to get firm diagnosis!!! Good luck and hang in there. You know your body so don't let those uneducated doctors tell you differently.