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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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    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
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