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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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    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
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