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Could A Little Gluten Be Okay For Me?


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8 replies to this topic

#1 ramdr

 
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Posted 12 October 2012 - 06:56 AM

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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#2 kareng

 
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Posted 12 October 2012 - 07:09 AM

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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#3 GottaSki

 
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Posted 12 October 2012 - 07:16 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 psawyer

 
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Posted 12 October 2012 - 07:20 AM

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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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#5 birdie22

 
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Posted 12 October 2012 - 07:41 AM

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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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011

#6 GFinDC

 
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Posted 12 October 2012 - 07:50 AM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 IrishHeart

 
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Posted 12 October 2012 - 07:57 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#8 ramdr

 
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Posted 12 October 2012 - 08:26 AM

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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#9 IrishHeart

 
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Posted 12 October 2012 - 08:36 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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