Do I have Celiac

Hi all

I'm just beginning to wonder if this might be an issue for me and not at all certain so thought I'd post and see if my situation is familiar to any of you.

I was diagnosed with Type 1 diabetes (LADA actually) in 2007 - was initially misdiagnosed as type 2 due to age. I also have Graves disease which I got first. I had my thyroid destroyed with radiation in 1994 and have taken thyroid replacement since.

So in having those two autoimmune conditions I know I am in the at risk group. I have been reading about Celiac and nothing jumps out at me like "oh yes, that's me." but the symptoms are so diverse and some people don't even seem to have an symptoms at all.

Here is what I do struggle with: I had a lifelong addiction to sugar, both physical and emotional and so have not eaten sugar at all for 16 years now.

I have been diagnosed with Acid Reflux disease for years and years but my symptoms never seemed the typical "feeling of food coming back up" description. But I was prescribed GERD medications and did well for many years. Then it started getting worse and the meds didn't help. I also have an arrythmia and that always comes with the GERD symptoms which makes it much more unpleasant. Because none of the usual meds were helping I had an endoscopy recently and nothing notable appeared. My GI concluded that I don't have acid reflux but rather an "oversensitivity of the nerves" in my esophygus. He gave me meds for nerve pain (an anti-depressant that also works for neurological pain) which I take with my anti-GERD meds. It helps some but I still have symptoms on an almost daily basis. Soooooo....I've been looking for answers. No diahrrea or lower abdominal pain.

Do my symptoms sound familiar to anyone?

Thanks for your response, Sally.I’m not at all sure about this, but just looking for answers to my ongoing esophygeal (sp?) pain so I am especially interested to hear you say that you have less issues with hyperacidity and reflux! Sugar is not an issue for me; I haven’t eaten it for 16 years. But I’m not looking forward to more dietary limitations unless, as you say, I know. You say try “gluten free for a few months”. That’s a big commitment. So my question is do you notice a direct connection? In other words if you eat something with gluten do you experience the hyperacidity and reflux soon after? I frequently have pain a couple hours after a meal, but have found absolutely no definitive connection to the regular GERD foods. Will I be able to note a direct connection if I do or don’t eat gluten? Or is the connection less directly related to when you eat gluten? Do you have to be totally gluten free for a couple months to see any difference?

Thanks, Sally. I’m not at all sure about this, but if a couple weeks would show some difference it would be worth a try. Yet another change in diet…sigh…soon I will be eating seeds and nuts in the forest…lol

I haven’t had OJ since my diabetes diagnosis, but it was definitely on the list that triggered GERD for me, also tomatoes if I eat them in significant amounts-haven’t eaten anything with tomato sauce for many years. But lately it seems a couple hours after I eat whatever I get the pain. It gets old.

I had an endoscopy recently. I read that they can test for Celiac that way, but they have to do a specific biopsy. My GI did a biopsy but it was for that condition that is caused by longterm GERD (forget the name as I didn’t end up having it). I am guessing he would not see Celiac on a routine endoscopy unless he was checking for it? I remember you talking about having an endoscopy recently.

I think that there are simpler tests for celiac now. One thing to note is that once you become gluten free, any test will be negative whether you have celiac or not.

I keep recommending the following book, which has a great deal of useful information about not only celiac, but other autoimmune diseases related to it. The book is inexpensive from Amazon: “Celiac Disease, A Hidden Epidemic,” Revised and Updated, 2010, by Peer H. R. Green, M. D., Director of the Celiac Disease Center at Columbia University. Like diabetes, it’s a disease that is managed by the patient, so the more you know, the better.

Wheat and related glutens are hard for many people to digest, so even if you don’t have celiac, you might feel better eliminating them from your diet. (Just remember that tests after going gluten free will be negative.) I discovered on my own 20 years ago that I have Celiac with an elimination diet, and so went gluten free. I am now so much healthier that I realize that I probably had the disease all my life, causing a lot of nutritional problems over the years. The two concessions I make to the acid reflux problem is to doctor up my coffee with milk and avoid spicy foods. Good luck to you.

Thanks for your response, Trudy. I guess I need to decide whether to get the test or self-diagnose by removing gluten (or just do it for improved health anyway, though lord knows I have enough limitations on my diet already!).

I will definitely check out the book for more information.

Don’t want to confuse the issue, but I actually react more to rice than to wheat, so going gluten free was not the definitive answer. I don’t eat any regular wheat and find that I can eat barley and rye with no problem. For me, it was joint pain from an inflammation response, in addition to bloating and some abdominal pain. I actually get that from several different grains and from beans, just because they are more difficult to digest. One thing worth checking into is the “Specific Carbohydrate Diet” which avoids all grains and simple carbs so is great for diabetics. Many people with irritable bowel find relief with that diet. Unless you actually have celiacs, just going gluten free might not clear up your symptoms. You could try cutting out one thing at a time for a few days and see if you get relief. I gave up all the foods which triggered me for more than a year, eating absolutely no grains, and avoiding about 40 foods which had showed up on allergy testing. Now I am able to eat just about everything, though I do a rotation diet, eating particular foods only once every 3-4 days. I am completely pain-free, so it was worth it.

Interesting, Libby. I had no idea that giving up foods for a period of time can actually cure the response! Although from the little I understand about it Celiac which is different from allergies in that it is an autoimmune condition.

I find it interesting that two of you also have GERD, though obviously 2 is not a statistically significant number. Have people heard that as a common combination?

I did buy a couple gluten free products (crackers and breadsticks). The bread didn’t look like I’d care for it and I tried some at a friend’s house once and didn’t like it. I think I’d rather just do away with bread if I have to.

I know if you have Celiac’s you need to go completely gluten free, but I’m wondering if just cutting a lot of it out would show a difference for diagnostic purposes?

Zoe, I don’t know the answer to your question of whether or not eating a small amount of gluten would ruin the tests. However, even a small amount of gluten will destroy your intestine’s ability to digest properly IF you have celiac. I’m sure there are a number of ways for you to go in this situation.

I had a bunch of symptoms and chose to do an elimination diet in which I quit eating all grains and other possible allergens, putting one food back at a time. It is really long term and somewhat difficult, but I did find my answers: I can’t eat wheat and related glutens, soy or corn. It’s been so long since I did this that I don’t remember the details, but I expect the info is somewhere on the internet. Considering all the problems you’ve had, however, it would probably be wise to talk to a specialist again, and maybe read the book I suggested, before launching into something so drastic on your own.

Thanks, Trudy. Yep, I’m not yet ready to dive in, because I don’t have that strong a feeling this is what is going on for me. What I had asked was not about the effect of a smaller amount of gluten on tests, but whether “cutting back” rather than “cutting out” would significantly reduce the symptoms if I had Celiac and it sounds like you are saying no, that it’s all or nothing.

Wow that’s pretty impressive trial you did. Did that include cutting out beans and lentils? I’d have a hard time with that as a vegetarian-wheat is hard enough! Yes, I am going to get the book, perhaps talk to a doctor and go from there. I was just wondering if there was any point in trying to slowly replace SOME gluten (like the crackers and breadsticks I bought) and see if there is a difference.

We’re all so different from each other that it doesn’t hurt to experiment. It would probably be worthwhile to keep a notebook with what you try and the results you get.

Yes, I think I will do that, thanks, Trudy.

Thanks, Jayne. Is this something that would be automatically seen with an endoscopy even without special biopsy taken? I ask because I had an endoscopy not too long ago to assess my GERD issues.

OMG…groan…lol. I definitely will do a bit more checking to see how likely this is before I go THAT route! Thanks, though.

Sorry you’re having bad reflux, Sally, hope you get some relief soon. What meds do you take? My reflux has never been typical but just pain and almost always exacerbated arrhythmia with it. When I had the endoscopy they said the same thing, just inflammation. My doctor has concluded that I don’t actually have reflux, but a nerve inflammation and I take meds for that as well as Dexilant for reflux. But my symptoms are pretty much daily to one degree or another which is why I’m looking at other possibilities.

Yeah, I am continually reminding myself to sit up straight especially after meals when my natural inclination is to recline (bad back). For me I wouldn’t mind the “reflux” so much if it didn’t come along with palpitations.

So it sounds like you are saying you don’t know if you have Celiac but you find the less gluten you eat the less reflux symptoms? (I guess it’s all connected). And it sounds like less may not be as good as none (of course), but does make a difference? I’m going to try that. Thanks!

Zoe and Super-Sally, when I realized through my elimination diet that I had a problem with wheat, etc., I told my then doctor, who did not offer to give me a test. I really had no choice but to go on a gluten free diet. Now, 20 years later, I feel really bad after a small amount of gluten, which is well hidden on labels–maybe you get more and more sensitive, though I don’t really know. When I read Celiac Disease, I found confirmation that I have Celiac Disease and not just an intolerance. I understand that in some countries you get some sort of tax break on gluten free foods if tested and diagnosed, but here I can’t see that it makes a bit of difference to anyone except oneself.

When I first got into recovery from my eating disorder and completely cut out sugar, many of the people I spoke to referred to flour, especially white flour as just as problematic. I didn’t find this to be true for me, so didn’t cut them out. Although now I eat far less than before due to diabetes. Perhaps there is a connection between a problem with sugar (the “allergy addiction” idea) and a problem with wheat.

Yeah, what we have to deal with! At least in my case I can blame it on getting older! (and I have a lot more time to deal with it than you do).

Good for you, Trudy, on figuring it all out and “treating” it yourself. More and more I’m understanding that is what we have to do with so many things!

I actually found the endoscopy not nearly as bad as my fears as you are right, the drugs make you be MIA. The hardest for me is that it was already scheduled on the late side as that’s when they had an appointment, and by the time they took me it was noon so I had a headache from not eating. But I gotta say the endoscopy is one thing but the very idea of a colonoscopy gives me the screaming willies…lol. Not something I am about to do unless it was really necessary.

Kind of see your point about the gluten free products, Sally. They weren’t high sugar or fat, but were expensive: $10 for a box of crackers and one of breadsticks. But though I’m on a budget, food is the one thing I don’t mind paying more for quality. But those breadsticks weren’t worth it…not at all. No flavor and no texture, compared to the artisan ones I usually get to eat with soups they are styrofoam! It was ok to dunk very flavorful hummus in but that’s about it. I’ll eat strong cheeses too on the crackers if they are that bad as well!