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Gluten Intolerant Or Celiacs Disease?


Spatchie

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Spatchie Newbie

I am in the process of my second attempt at a gluten free diet. The first time, I had some improvement (my main symptom is bloating), but I think I was getting glutened without knowing it (quaker rice cakes, rice dream and oats).

This time around I am seeing more improvement and really think that gluten has been the cause of my abnormal bloating over the past 5 months. I've only been gluten free this time since Wed (7/25/07). So I won't know for sure until I add gluten back in I guess.

My question is: How important is it to know if you have Celiacs or are just gluten intolerant. I had a negative blood test about 2 months ago. Is one worse than the other? What if I eat gluten on purpose a few times a year (Thanksgiving and birthday)?

Any info on the difference and if it's necessary to get clinically diagnosed would be appreciated.

Thanks so much,

Angela


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Nancym Enthusiast

Personally I think one is as bad as the other. You can have neurological damage with gluten intolerance and celiac, more autoimmune diseases with both, for my money, if you're intolerant to gluten you might as well just count yourself as a celiac because either way, gluten is bad for you. Also, you can be relatively symptom free and be celiac, does that mean gluten is good for you? No! It means you're at risk for all kinds of diseases down the road. So why not err on the side of caution?

I'd avoid the oats. Not only is cross-contamination an issue but many people are also sensitive to a protein found in oats.

I don't cheat because I know the reaction to gluten lasts for years in your body. Even up to 2 years after your last exposure. Why deliberately harm yourself?

par18 Apprentice
I am in the process of my second attempt at a gluten free diet. The first time, I had some improvement (my main symptom is bloating), but I think I was getting glutened without knowing it (quaker rice cakes, rice dream and oats).

This time around I am seeing more improvement and really think that gluten has been the cause of my abnormal bloating over the past 5 months. I've only been gluten free this time since Wed (7/25/07). So I won't know for sure until I add gluten back in I guess.

My question is: How important is it to know if you have Celiacs or are just gluten intolerant. I had a negative blood test about 2 months ago. Is one worse than the other? What if I eat gluten on purpose a few times a year (Thanksgiving and birthday)?

Any info on the difference and if it's necessary to get clinically diagnosed would be appreciated.

Thanks so much,

Angela

In terms of treatment there is no difference. The gluten-free diet applies to both. A positive test result should influence you to stay with the diet. I guess the main question is if you can't get a positive test result but definitely feel better gluten-free then what will you do? False negatives are possible but false positives are rare. At some point this could become a trial and error situation. The fact that you are giving the diet a second try indicates you feel this may be your problem. As far as cheating on holidays I personally never want to get another gluten related symptom the rest of my life either by accident or on purpose.

Tom

darkangel Rookie

I'll step up to the plate and admit I consider myself to be "gluten intolerant," but the jury's still out on celiac disease, and I view being GI as less serious than having celiac disease. As someone who's gluten intolerant, I avoid gluten 95% of the time, but have been known to cheat on special occasions, knowing it will probably cause me some discomfort in the same way folks who are lactose intolerant may enjoy the once-in-a-blue-moon bowl of homemade ice cream that's just too good to pass up. If my tests finally come back with a positive result for celiac, it will be much easier for me mentally to maintain a 100% strict gluten-free diet, knowing the stakes are much higher at that point. Perhaps I'm wrong and need to educate myself further.

Guest j_mommy

According to DR. Green's book.....Celiac's are gluten intolerant but someone who is gluten intolerant does not necasarily have Celiac. Kind of confusing but what I understand from the book is if you have neg. blood work and neg biopsy than you don't have celiac but are gluten intolerant. Of course this doesn't take into account false negatives!

I also agree with teh previous poster that treatment for both is a gluten-free diet!

Spatchie Newbie

Thanks to you all for your responses. It does make sense to me that whether GI or Celiac that you should avoid gluten always. The hard part is not actually being diagnosed and wondering if I'm giving up foods when I really don't have to. I've been working with the same Dr. since March and think I may need to seek out a Celiac specialist. I haven't found 100% relief of my bloating on the gluten free diet, but have seen improvements when NOTHING else has produced improvements.

Can gluten really cause trouble for up to 2 years after ingestion???? Could someone explain that to me? I'm very interested to know more.

Thanks :)

Angela

darkangel Rookie
The hard part is not actually being diagnosed and wondering if I'm giving up foods when I really don't have to.

Exactly. It's one thing to eat something knowing it might cause some temporary discomfort. It's another thing to eat something knowing it's destroying your digestive system. To further muddy the waters, there are plenty of times I've "cheated" and felt no ill effects... so you can't help thinking, "Gee, this must be alright, so long as I don't do it very often."


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mamaloca2 Apprentice
I haven't found 100% relief of my bloating on the gluten free diet, but have seen improvements when NOTHING else has produced improvements.

Can gluten really cause trouble for up to 2 years after ingestion???? Could someone explain that to me? I'm very interested to know more.

Well, I am still recovering after 5 months gluten-free. I try to be vigilant about my vitamins and eat well, and it seems to help.

Also, you may want to consider that you may have other food intolerances like lactose intolerance that can also cause bloating.

Good luck!

Stacy

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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