Do I need a celiac diagnosis?

[TabithaJ]

Hi, I was diagnosed with IBS 40 years ago and have always had stomach issues.  It got so bad with diarrhea every time I ate that I went to the doctors who blood tested for celiac but it came back negative.  I decided to go gluten free and within two weeks the diarrhea stopped and I am now 7 months down the line, with very infrequent bouts of diarrhea.  I still get tummy ache most times I eat but I think its improving.  I still cant eat if going out as I get stress tummy from all the years of issues but am gradually getting better with it all.  As I know many people with celiac, that had initial negative bloods, I asked my doctor for an endoscopy to rule our celiac as I am concerned that I am still probably having some cross contamination and I realise that I need to be more careful if I am celiac as it causes damage rather than just unpleasant reactions!  My doctor basically said 'if the symptoms have gone away when you dont eat gluten, then just dont eat it'.  She doesn't see the need for an endoscopy.  As I have other issues such as unexplained infertility, vitamin D deficiency, inflammation of nasal passages - which I have all seen linked with celiac - I thought an endoscopy would be a good idea.  She has suggested a stool sample test to check for inflammation and said I dont need to eat gluten again to have this done.  She is also going to test my bloods as they haven't been done since the vitamin D deficiency was picked up on a blood test about 6 years ago.  Am I worrying too much about the cross contamination and should assume gluten intolerance rather than celiac as bloods were negative.  Thanks for reading!    

[trents]

Welcome to the forum, @TabithaJ!

It is certainly possible that you have IBS and also a gluten-related disorder. At least with celiac disease, IBS and Crohn's are more common than in the general population. It is also possible and even likely that you have other non-gluten food intolerances. Again, in the celiac population, developing additional food intolerances is very common. The most common offenders are dairy, oats (even gluten free oats), eggs, corn and soy. A number of foods have proteins that are similar to gluten and cause "cross reaction". Not to be confused with cross contamination. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) the same way they do to gluten.

Even if you have had NCGS (Non Celiac Gluten Sensitivity), some experts feel that can sometimes be a transition phase into celiac disease.

Indeed, you do outline some classic symptoms of celiac disease. Unfortunately, the only reliable way to test for celiac disease at this point is for you to engage in a vigorous "gluten challenge" and get retested. That would involve the consumption of 10g of gluten (equivalent to 4-6 slices of wheat bread) daily for several weeks. Your concern about cross contamination is valid, whether or not you have celiac disease vs. NCGS. The antidote for both is total abstinence from gluten and I'm afraid too many people take NCGS too lightly. Without a formal diagnosis of celiac disease, it is hard for many people to adhere to a strict gluten-free diet. It's just how the psychology works. 

Because your employ the term "bloods" to speak of serological lab work, I am assuming you live in the U.K. There may also be stipends, tax incentives and additional health care system supports available to you if you were officially diagnosed with celiac disease.

[Scott Adams]

Hi @TabithaJ, since you've already linked your symptoms with eating gluten, can I ask why you feel the need of a formal diagnosis? You've talked about the various symptoms you've had, which could be explained by undiagnosed celiac disease, but since you had negative blood tests for celiac disease it's possible that you may not have villi damage. I ask about the need for confirmation only because it sounds like you might stay gluten-free either way, and if that is the case it might not be wise to damage your gut again, as it can take months or years to heal, depending on the level of damage.