VICTORY! DIAGNOSIS! Wheat Intolerance - now looking for advice
#362723 - 12/31/10 03:34 PM
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Okay, I'm not 100% certain but since eliminating wheat from my diet I've had ZERO IBS symptoms. I was tested for celiac disease but it came up negative. Its looking like a diagnosis of non-celiac wheat intolerance. I need to do a few more non-wheat FODMAP challenges to be 100%.
What comes next?
I'm tempted to grab a few books off of amazon. Where are the experts on this topic? Is there anyone doing research?
I'm disappointed that I must remove wheat from my diet but happy to be in control of my body.
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Glad to hear you had some success.
If you are following the FODMAP approach then elimination of wheat producing positive results is not due to wheat intolerance but rather due to fructan malabsorption. Fructans are one of the FODMAPs. You will likely find other foods containing fructans such as artichokes, asparagus, cabbage, garlic, etc could be problematic too.
Check the first link in my signature. Besides have an excellent brief explanation of the FODMAP approach at the bottom of the page is a table that you may find helpful. You may find you have problems with other FODMAPs beside fructans.
You might conside buying this book written by the dietitian that worked with the Australian GI doc who devised and tested this approach over the past decade. She was responsible for advising the GI patients on how to manage the FODMAP diet. She is the dietitian who probably knows the most about this approach.
Tell us how it goes. 
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Yesterday i had hard shell tacos. i was a bit gassy but so what - its mexican food. there was a good portion of beans on the tacos. i've been perfectly fine today. also, brooklyn lager doesn't cause me any problems. there's no wheat in it but it has barley which does include gluten. i guess i need to do the tests in larger amount but its pointing toward an intolerance of a wheat protein.
at any rate, i'm happy that i have a safe diet that i can return to should any of my experiments go awry.
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How long has it been since you stopped eating wheat and felt better? Also were you eating wheat when you had your blood test?
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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12-24 hours from wheat free to no problems.
i did have some wheat within a few days of the blood test which i suspect makes it valid. i had some beer which must have had some wheat judging by my stomach's response. i'd also cheat now and then by having a few nibbles. i believe i feel this the next day so i've stopped doing it.
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If you had a blood test for celiac disease you need to be eating gluten (wheat) regularly for a couple of weeks before the blood test or the results are not reliable. Here is what the NIH says about the blood test "Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present."
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Thats good to know, although like many before me I'm not inspired to endure a long period of diarrhea for the benefit of a test.
I have no problem with beer brewed from barley although it certainly has gluten in it. I hope this is sufficient evidence to confirm my hypothesis.
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If you have celiacs disease it is really important that you get a complete and proper diagnosis. If it is left untreated it can have serious health consequences.
The amount of gluten in beer may vary a lot from beer to beer. It is questionable if it is an indicator of gluten problems as the symptoms may not appear immediately. If you do have a gluten problem then it would be best to stick with gluten free beer.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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man, this stuff is ridiculous pain.
so i'm supposed to make myself sick for a week or more for a test? thats awful.
i've never experienced the serious symptoms of celiac's disease, mainly nutrition malabsorption and fatigue. i'm an active person so i'd notice. (1.5 hrs/day of intense exercise)
i'd like to do this as i should, but its going to take some convincing that there would be some value in going through all that.
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Perhaps this article from the Mayo Clinic might give you an incentive. It says "According to Mayo studies, undiagnosed celiac disease can quadruple the risk of death"
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Just because you feel better for a short time after stopping eating wheat doesn't mean you actually can confirm a wheat intolerance. Plus what you had, beer, is a trigger food! Also not eating something for a day doesn't get it out of your system. If you have a wheat intolerance it would take longer to see benefits.
To get an actually accurate test for celiacs there has to be antibodies in your system to find so you have to eat wheat to get a true blood test. However doing an elimination diet to see how you feel off wheat can be done as long as you want without having the blood test.
I have done eliminations that make me feel awesome at first and then have no lasting benefit. That is why I asked how long you have been wheat free and feeling better. Our own minds make us feel better when we think something will work. The placebo effect is very strong! So you can keep avoiding wheat and see if you continue to feel better or you can eat some and get a conclusive blood test.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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I've done some reading -
Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance. [Paperback] - http://www.amazon.com/gp/product/0976853795/ref=oss_product
and
Food Allergies and Food Intolerance: The Complete Guide to Their Identification and Treatment [Paperback] - http://www.amazon.com/gp/product/0892818751/ref=oss_product
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I just don't think I have celiac disease. My symptoms do fit the description of an intolerance (which is a variety of allergy). I'm not sure how much weight i give asymptomatic celiac disease. I just can't worry about diseases i don't have symptoms for.
I stopped eating wheat and felt better within 12-24 hours. If I eat wheat by mistake, the symptoms are fairly short lived.
I might do testing and possibly further treatment with an allergist but see little reason to do further celiac tests simply because they're not very good.
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Do you still eat foods with yeast? Did the wheat foods you were eating also contain yeast? I discovered by trial and error that yeast, or variations of yeast, caused me my symptoms.
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i don't seem to have trouble with beer created without wheat or wine. flour tortillas cause trouble.
it appears not, but thanks for the presenting the idea. its certainly worthy of consideration.
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