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Fairy Dancer

Could It Be The Gluten After All?

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To cut a long story short, I went on a gluten free diet some months ago to help with IBS and CFS type symptoms. The reason I considered trying a gluten free approach was because I have a brother (half brother, same mum different dad) with celiac disease. Anyway, about a month or so after starting the diet I did experience some improvement which continued for a while after that. However, during that time I went for blood tests for celiac disease and as they came back negative, I started eating wheat again.

One and a half months later and my IBS and CFS type symptoms are back with such a vengeance I am bed ridden again most days. My migraines are also back and plaguing me. My gut is constantly bloated, the diarrhoea is coming and going, some of my stools are so pale it's worrying, my gut is constantly sore (upper part of my abdomen, not lower) and feels like its been sandpapered or something, I feel dizzy, fatigued, nauseous and just plain ill.

Could it be my return to eating gluten or is it just a coincidence? Should I consider going gluten free again, despite the blood test result, to see if there is an improvement?

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No, I don't believe there is any coincidence there -- direct cause and effect :P

Firstly, the celiac testing is not 100% accurate; in fact, only about 80% whether blood or biopsy.

Second, even if you are not celiac you may be non-celiac gluten intolerant. Same symptoms, you just didn't study hard enough for the test :rolleyes:

Third, it is classic that after your body has had a rest from gluten it reacts morer violently when it is reintroduced. They have found a special kind of T-cell which the body produces for this occasion :) It is as if the body is so teed off at having to deal with gluten again after gaining such relief, it is really outraged and determined to show you it does not want it.

I definitely recommend a gluten free diet for you. :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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To cut a long story short, I went on a gluten free diet some months ago to help with IBS and CFS type symptoms. The reason I considered trying a gluten free approach was because I have a brother (half brother, same mum different dad) with celiac disease. Anyway, about a month or so after starting the diet I did experience some improvement which continued for a while after that. However, during that time I went for blood tests for celiac disease and as they came back negative, I started eating wheat again.

One and a half months later and my IBS and CFS type symptoms are back with such a vengeance I am bed ridden again most days. My migraines are also back and plaguing me. My gut is constantly bloated, the diarrhoea is coming and going, some of my stools are so pale it's worrying, my gut is constantly sore (upper part of my abdomen, not lower) and feels like its been sandpapered or something, I feel dizzy, fatigued, nauseous and just plain ill.

Could it be my return to eating gluten or is it just a coincidence? Should I consider going gluten free again, despite the blood test result, to see if there is an improvement?

Blood tests are notoriously inaccurate. If you really want a good test that way consider having your stool tested. It is less accepted by the AMA but the actual science supports it. Entero Labs is really the way to go.

However the best test of all is how you feel. If you feel bad eating gluten then you shouldn't do it. Most people would consider bed ridden not acceptable.

Not everyone is classically celiac, however many still react just as badly. Many of the doctors haven't gotten up to speed in this matter. Check out Vicky Pederson's U-tube videos on this subject.


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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So you had IBS and CFS. You stopped eating gluten and felt better. You went back to gluten and the IBS and CFS returned. I think you have your answer! :)

Blood tests are notoriously inaccurate. If you really want a good test that way consider having your stool tested. It is less accepted by the AMA but the actual science supports it. Entero Labs is really the way to go.

No, actual science does not support all the tests Enterolab does. TTG maybe. There is not a shred of evidence that low levels of fecal AGA mean anything, and rather a lot of evidence that they don't.

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Anyway, about a month or so after starting the diet I did experience some improvement which continued for a while after that. However, during that time I went for blood tests for celiac disease and as they came back negative, I started eating wheat again.

Hon, you had the blood test done while off gluten. That is going to affect the result and possibly give you a false negative.

Also, some people are serio-negative celiacs. (like me) My blood panel was negative. Twice.

Everything else I would say to you, Mushroom and Skylark, et al. said so eloquently, so I'll just say "see above."

Bottom line is--if you feel better off gluten, that is your answer.

:) There are no coincidences.


"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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Sounds like you had the testing done at the exact wrong time! You must be eating gluten regularly - and lots of it - to get valid test results. You may want to retest now that you are on gluten, or you may want to feel better sooner and just cut it out entirely!

In my opinion, the reason to get tested for celiac autoimmunity is so that you can determine if you have to completely avoid it in the absence of symptoms. People who are "just" gluten sensitive supposedly can decide how much gluten to eat based on symptoms. I wouldn't be surprised if someday we learn it's also bad for gluten sensitive folks to have any gluten.

Another benefit is the emotional validation that a positive test can give. But a gluten challenge can give the same validation. Sounds like you got it!


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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