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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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