Gluten reaction while gluten-free

[jlormberget]

I was diagnosed with Celiac and I have been gluten-free for about 4 years. I didn't have a very strong reaction to gluten so my GI told me I didn't have to go gluten-free, but I did anyway. He was convinced that all I have is IBS (which might be true, but I'll get to that in a minute). I'll admit to occasionally "cheating" and eating things with gluten knowingly. Sometimes I'd feel bad and sometimes I wouldn't. I only cheat about 3-4 times a year so it's not like I do it a lot. I know that this is bad, but when you don't feel bad after eating gluten it can be really hard to stay gluten-free even with a definitive diagnosis of Celiac.

Even eating completely gluten-free I still have loose stools almost all the time. I'm not in pain and doesn't come with cramps so I've just ignored it and thought it was my lot in life. That's why I think I probably have IBS. I know there's nothing to do for it so I haven't thought that much about it.

Fast forward to around Christmas time. I think I may have accidentally eaten something with gluten in it because I had my typical reaction (bad heartburn). Since then I have gone above and beyond to make sure that I am not even getting CC. I only eat at home and I only cook with things that haven't come in contact with gluten, but I have had heartburn non-stop since then. I gobble Tums at night and take Prevacid every day. The prevacid helps a little, but by dinner I'm back to being miserable. My stools have gotten even worse and I constantly feel bloated.

I know that sometimes people with Celiac can develop sensitivity to other foods. Does it sound like that is what is happening to me? If so, should I try to do the elimination diet (please say No!) or should I go to a doctor to get a diagnosis? Are there other options?

[TexasJen]

Some people with celiac disease get something called gastroparesis. It's basically a slowing down of the entire GI system. So, the food you eat, could just sit in your stomach and not move on which COULD lead to heartburn symptoms. I'm not saying it's true for sure but just maybe a possibility. Since for some people, cheating causes weeks to months of symptoms, it's possible that if this were the case, your heartburn could be related to celiac and occasional gluten intake. 

Other surprising foods that cause heartburn are mint (any kind - gum, peppermints, mint tea), tomato containing things like marinara sauce, tomato juice, citrus, caffeine.  If you eliminate those foods and try not to eat or drink anything (even water) 2 hours before laying down at night and still get symptoms, you could get your GI doc to do a test (gastric emptying study) and see if you have gastroparesis.

Good luck!

[cyclinglady]

Ask your doctor for a celiac antibodies panel.  Determine if gluten is really the culprit for your heartburn.   You should be tested annually as part of celiac disease follow-up care.  Get your bones checked too.  Silent celiac disease can do systemic damage.  

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[Jmg]

Hi! I confess I don't understand this passage:

3 hours ago, jlormberget said:

 

I was diagnosed with Celiac and I have been gluten-free for about 4 years. I didn't have a very strong reaction to gluten so my GI told me I didn't have to go gluten-free, but I did anyway. He was convinced that all I have is IBS (which might be true, but I'll get to that in a minute).

 

Were you actually diagnosed with Celiac? If so, why does your GI doubt his own diagnosis? If you have celiac you should've been made aware of the consequences of occasional gluten exposure: 

“Death was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the GFD…Non-adherence to the GFD, defined as eating gluten once-per-month increased the relative risk of death 6-fold…Our results emphasize the need for prompt diagnosis and treatment also in those patients with a minor or symptomless form of coeliac disease”

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[jlormberget]

JMG - I didn't understand it either. I can't remember the exact wording he used, but it was to the effect of "you have Celiac, but a mild case so eating gluten probably isn't causing the symptoms you describe. It isn't necessary to eat a gluten-free diet and if you do, you probably won't notice a difference in those symptoms". That didn't sound right to me so I opted to go gluten-free. The heartburn went away, but the rest of the symptoms remained so he was partially correct. I guess I'm one of the ones who has the minor or symptomless form of coeliac from your quote above. I do know the dangers of eating gluten, but like I said, it's hard to resist sometimes knowing that there is really no immediate pain. Think of it like smoking. We all know smoking can cause cancer, but even a smoker has a hard time giving it up.

Cycling Lady - thank you for that information. I was not aware that I was supposed to be having follow-up care. I literally saw him once for the diagnosis and never again after that (save for my follow-up colonoscopy, but I was under sedation so it's not like we talked).

TexasJen - Thank you for the information. I do eat some of the foods you describe, but up until Christmas they have never caused me any pain. Is it normal for it to pop-up so suddenly and severely?

 

 

[Jmg]

Thanks for the explanation  I think you were ill served by that diagnosis. You may find this interesting: Open Original Shared Link

I think in regard to giving up gluten that indulging now and then actually makes it harder, a bit like the smoker who has the occasional one. Not so much because it renews the addiction but because you're thinking about it more, gluten is still an option for you every so often so you feel the lack of it more. Whereas if you take the leap to being a non gluten eater period you may find yourself less tempted - it's simply not an option for me now so I don't think of it so much. Hope that makes sense!