Any help is appreciated.

[Mm123]

Apologies for how long this is, but I’m really confused and conflicted and I would really appreciate any advice. 

About two months ago I went in for a regular doctors appointment and requested general blood work. The last time I was tested was around 10 years ago when my brother was diagnosed with celiac disease. My tests back then were normal. I requested my blood work this time to include testing for celiac, just to check. I had no symptoms and no other reason to believe I would have celiac other than the fact that my brother has it and that I’m supposed to occasionally check to see if I’ve developed it. 

A month later I was called back in and informed that I tested positive for endomysial AB antibodies IgA. I was referred to a gastroenterologist, but after some basic research on the internet and with the knowledge that my brother has it, I came to the decision to start a gluten free diet. I wanted to avoid seeing a gastroenterologist if possible considering that the whole process can be expensive and if my research about my positive test is correct, it seems nearly impossible to test positive for those antibodies and not have celiac disease (please correct me if I’m wrong). 

I’ve been gluten free for about a month now and everything is relatively unchanged, but I’m questioning if I maybe got a little ahead of myself and if I should resume eating gluten. First off, I have no symptoms that I’m aware of. My regular blood test came back completely normal—no deficiencies or anything concerning regarding my nutrition. Second, I was told that my other tests for celiac disease came back normal. My endomysial AB titer is 1:80. My FGliadin IgG is <0.4. My FGliadin IgA is <0.2. My reticulin AB is negative. My tissue transglutaminase IgA is <0.5. Given my test results and my family history, is it safe to assume that I do have celiac disease? 

My reasoning for not wanting to continue my gluten free diet, besides the obvious wanting to eat gluten, is that since I don’t seem to have any symptoms or deficiencies, I would like to avoid potentially causing more problems by being overly cautious. I have IBS and a pretty severe intolerance to garlic and onions. Omitting gluten on top of that is difficult and I’m afraid of becoming intolerant to gluten in case I don’t have celiac disease. I have cut garlic and raw onions out for about two years now and all my severe symptoms (severe stomach cramps and diarrhea) have gone away since then. I came to the conclusion that garlic and raw onions were my trigger after doing the low-FODMAP diet. Is there a possibility that I’m mixing up my IBS symptoms for celiac? And is there a possibility that my IBS symptoms could be resolved by a gluten free diet? I have never had a reaction to gluten and my reactions to garlic and onions are so severe that I’d rather honestly cut out garlic and onions than gluten if given the choice. 

Do I have silent celiac or have I gotten ahead of myself? I have considered continuing to eat gluten and regularly get blood work done to see if I have any deficiencies or symptoms. My brothers symptoms were nutritional deficiencies/malabsorption and sudden weight loss. Obviously, if eating gluten affects my health and increases my risks for diseases I’ll continue my gluten free diet. But what is the severity of complete silent celiac? And if I omit gluten how much does it lower my risks to health problems compared to what risks I may already have genetically? 

I know the most straightforward way to get an answer would be to see a gastroenterologist and to get a biopsy done, but I’d really like to avoid that if possible. Is there anyone who can offer some advice on what I should do? 

Thank you!

[trents]

Welcome to the forum, @Mm123!

First, many celiacs are asymptomatic for many years after the onset of the disease. We call them "silent" celiacs. Second, the endomysial IGA test (aka, "EMA") is a very very reliable indicator for having celiac disease. It is not often run these days, having been largely replaced by the tTG-IGA which is less expensive. But the EMA is probably the most reliable blood antibody test available. Third, I believe there is a strong possibility your IBS is actually misdiagnosed celiac disease. The fact that your other blood values are normal and you have no weight loss may be due to the fact that you are in the earlier stages of celiac disease. Also, it is a misconception that all people with celiac disease will lose weight. Some gain weight because they are eating more to unconsciously trying to compensate for nutritional deficiencies. My suggestion is that you schedule an endoscopy/biopsy and keep eating significant amounts of gluten up to the day of that procedure to ensure its validity. If you do not, you will always be in doubt about whether or not you have celiac disease and will be unable to stick to a gluten free diet. You will find excuses to cheat. That's how the psychology works.

[Mm123]

Thank you for your response @trents! I appreciate your insight very much.

[Awol cast iron stomach]

Hello. I was misdiagnosed for decades as IBS. As trents said many of us may not fit the "typical" profile, and were missed. My cousin is a gold standard celiac, and they took too long to diagnose her as well. 

I definitely had signs before official diagnosis, but it was often times  dismissed, and/or minimized. 

Having the genetic component with the sibling. I hope you are able to get testing, and an answer. The actual correct diagnosis for me helped give me clarity that my ailments, and symptoms were not IBS or other issues at all. It was amazing how many symptoms gluten caused for me. 

Best wishes 

 

[Mm123]

@Awol cast iron stomach thank you for your response. Honestly, being diagnosed with celiac makes me question how accurate my IBS diagnosis was, however, I would be surprised if it was actually celiac considering how severe and immediate my reactions were to garlic specifically. Meals that I ate in the past that contained garlic and no gluten still gave me reactions, so I have a feeling it’s both celiac and IBS. I appreciate your insight though and I will definitely keep an eye on my IBS symptoms now that I’m gluten free. Hopefully, one day I can consume garlic and raw onions again…that would make this gluten free journey a whole lot easier. 

[trents]

IBS is more common in the celiac population and visa versa.