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Could A Little Gluten Be Okay For Me?
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Hello all.I am new to this message board. I have diagnoses of fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome, but not celiac disease. My doctor suggested I try a gluten free diet, hoping it would help with GI symptoms. I did it for 2 months and my symptoms didn't change, so he felt I wasn't going to get any benefit from it, and I went back to my regular diet. My energy level is pretty low, and it was extra work to stay gluten free. Since then, friends have suggested I try it for a longer period, since there is anecdotal evidence that benefits may take up to 6 months or more to appear. My first question is, does this make sense? Secondly, if I am not noticing any improvement in GI symptoms, and don't have celiac disease, does this mean I probably am not very sensitive to gluten, and therefore don't need to worry about small amounts of gluten, such as "natural flavoring" waydown on the ingredient list?

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I have a friend with fibro who has been tested and endoscoped many times and does not have Celiac. She was told to go gluten-free for her fibro. She doesn't purposefully eat gluten but will take the croutons out of her salad or not worry that her meat was cooked on a grill with soy sauce on it, etc. Whether that is enough to help, I'm not sure anyone really knows. Maybe the doctor has some research you could read? Or he could explain?

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Was Celiac Disease ruled out by full celiac panel, nutrient blood work and endoscopic biopsy?

I'd vote for a longer - very strict - trial of at least six months. Even minute amounts of gluten can maintain the reactions and will definitely prevent symptom improvement - especially digestive.

If you have been eating regular amounts of gluten, make sure you don't need any further testing before you stop eating it.

Good Luck :)

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The "natural flavor" concern is dated. Wheat can no longer legally be hidden in there in the US or in Canada. Rye (and oats) don't hide, period.

So, the question is barley. In Canada, products packaged after August 4, 2012 can not hide barley.

But for practical purposes, the flavor of concern is barley malt. It is an expensive ingredient, so its presence will be disclosed--they WANT you to know it is there.

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I agree that it may well take longer than 2mos to notice a change. I am blood test negative and it took me approx 4 mos to feel like I was on the right track with eliminating gluten from my diet. It helped me to keep a symptom tally and look at the tallies each month and I could see progress. I could see that bloating that was happening 14+ days a month was then "only" happening 5x a month for example. My fatigue was one of the last things to improve.

If you have full celiac testing then it couldn't hurt to try a longer elimination trial.

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Hi,

When you were gluten-free for 2 months, what did you eat? Did you eat whole foods or processed foods? Did you get a new toaster and new colander? Did you replace your wooden and plastic bowls and utensils with new ones? Did you verify your meds and vitamins and coffee and tea etc were gluten-free? Did you kiss gluten eaters without them brushing their teeth? Did you eat oats?

Sorry for the 20 questions, but many people don't think of these things when first going gluten-free. The immune reaction is very sensitive, and it doesn't take much to set it off. And it doesn't stop quickly once started either. So if you were exposed to small amounts of gluten once a week you may never have gotten past the immune response.

How about your vitamin and mineral levels? Did the doc test you for them? Celiac cause mal-absorption and that leads to deficiencies. It sounds like you have a pretty smart doc there.

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It is not just anecdotal evidence that it takes 6 months or longer. For any type of system-wise inflammation to resolve, it may take a WHOLE lot longer than that to see improvement.

Since fibro, chronic fatigue and IBS are all "syndromes" with no really proven and lasting treatment protocol, then staying on a strict gluten-free diet for a few more months may show you some improvement.

You have nothing to lose and possibly everything to gain.

I know, I was told I had all of these syndromes. These are what I call "wastebasket, dead-end diagnoses" and no drugs ever helped.

It is something to label a patient with when they cannot find anything else.

It was celiac, not fibro after all. I just saw an interview with the actress and advocate Jennifer Esposito who has celiac and she was told she had the same things. She doesn't.

In my MT's practice, the majority of women with "fibro" improve (or eradicate) their symptoms going gluten-free, getting massages and using their muscles in doing light yoga and walking and strengthening exercises.

I know it is painful, but NOT using the muscles will make things worse. They will atrophy. It happened to me as a result of malabsorption and see it all the time in others. Your muscles may be impaired by nutritional deficiencies and if that is the case, it is best if you are VERY sure celiac is not the actual disease you are suffering from--and not these various syndromes.

My celiac panel was negative, too--but, I have it.

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Thanks for the quick responses. I don't think I had a biopsy, just blood work. I have not eliminated or checked on all the possible gluten sources mentioned by GFinDC. Unfortunately, just reading about all the things I should check on makes me tired and gives me a headache. However, the possibility that I can eventually feel better is enticing.

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Thanks for the quick responses. I don't think I had a biopsy, just blood work.

Well, then you cannot rule out celiac just yet and you should stay on gluten if you are going to have a biopsy.

Talk to your doctor about this as he has not done all the testing yet.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
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    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
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