interesting article on non-celiac, gluten intolerance

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yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 1/20/2008 5:31 PM (GMT -7)   
I just found an interesting piece arguing that the traditional test for celiac ignores many who might be intolerant of gluten. I don't know if it is valid or not, but since I am doing a month of no gluten and we have discussed it here, and he brings up IBD, I thought someone might want to read it.
 
 
http://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 1/20/2008 5:34 PM (GMT -7)   
Great article, lots of good info.  Thanks for posting it for all.  That was thoughtful of you to do.  It is so good to see the members educating themselves and sharing with the others here in CD.

 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
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yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 1/20/2008 5:38 PM (GMT -7)   
thanks Kitt. you really are such a great mod. kind, thoughtful, quick-to-act...we all appreciate you!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 1/21/2008 11:04 AM (GMT -7)   
yoga- how is the no gluten treating you?
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 1/21/2008 3:00 PM (GMT -7)   
thanks for askin' Fitzyk,
I am cautiously hopeful
It has been 9 days, and I actually think my pain is a bit better. it would fabulously, miraculously wonderful if this works!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


rootsmith
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Date Joined Jan 2004
Total Posts : 598
   Posted 1/21/2008 3:01 PM (GMT -7)   
This is exactly my situation. Very high blood levels of IGG AGA (antigliadin antibody) with negative ttGA (more specific), duodenal biopsy negative. The gi I was seeing at the time did the biopsy even though the ttGA was negative because you can have celiac disease with negative antibody by blood test and no gi symptoms. He skipped the IGG IGA probably because it is not specific for celiac disease. I consider myself to have non celiac gluten sensitivity, unknown cause (possibly IBD) The interesting thing was that my IGG AGA level was still very high and I had been gluten free for about 5 months.

I think in the not too distant future more of the medical community will agree with what is discussed in this article. What I don't understand is why so many are hesitant to recommend trying a gluten free diet, like it was some kind of torture or medically irresponsible.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 1/21/2008 3:05 PM (GMT -7)   
so good to hear your thoughts, Root. I found the article really helpful, because people keep asking me, "if you know you don't have celiac, why would this help?" the article explains that well, I thought. and yes, I don't know why my docs, after 22 months, two surgeries, countless tests and meds, wouldn't have just said, "why not try no gluten for a few weeks?"
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 1/21/2008 7:09 PM (GMT -7)   
They didn't say that because they don't believe there is such a thing as non-celiac gluten intolerance or they might suspect but it hasn't been "proven" I guess I answered my own question- if they don't believe it, why would they recommend it? My present gi NP said that you can have gluten intolerance without celiac disease so there are some mainstream doctors/practices that do believe its possible. However, I'm not sure this practice would have actually recommended eliminating gluten.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/21/2008 8:52 PM (GMT -7)   
interesting root, I was just on some celiac sites, and those on their forums seem to disagree about this, too.
I feel a bit cranky today, as I was ready a year and a half ago to give up wheat, but my GI said no need! I am, however, loving the bob's red mill gluten-free cornbread I made yesterday. I am amazed how nice it feels just having something bread-like.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 1/22/2008 9:13 AM (GMT -7)   
Is there eggs in it? I actually bought a box of "egg replacer" once but never used it. I'm not that interested in cooking or baking to begin with so the extra effort completely kills it.

Yoga, Did you ever have gi symptoms or was your primary symptom pain? I didn't develop actual gi symptoms until I went back on gluten to be biopsied. I only had RLQ pain I can't remember how going gluten free affected the pain at first. I've been gluten free for over 2 years and have had pain during that time so I guess it didn't help that much with that. But that's me. The results could be different for other people. I hope it helps you!!!
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/22/2008 10:13 AM (GMT -7)   
yes, there are eggs in it, but I am ok with eggs (I think!) I don't do the cooking in our house, but I love to bake and so I am willing to figure out how to bake for me. and I really, I mean really, have lived on cereal and breads for the past two years, so I would miss it.
my primary symptom was pain. I had some C and bloating, but pain has always been the problem, and it has been URQ and right above my belly button. it has never moved nor has it ever been gone, and it honestly came out of nowhere. this has been such a weird experience, and if I could finally feel a bit better I would be thrilled.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/23/2008 10:22 AM (GMT -7)   
I was diagnosed with Celiac first, and the Crohn's came second. I've been strictly gluten free now for almost 7 years.
The thing that "gets me" about the medical community is that so often, if something does not exhibit the "classic" symptoms of disease x, y, or z, they have no idea what to do with you. I think that every individual could have different issues that result from gluten intolerance.

After I had been gluten free for about a year, my mom decided to give it a go too. She had part of her bowels removed due to Crohns years and years ago. She still had general upset stomach, D, and her rhumitoid arthritis was just terrible. They gave her 10 years to live 10 years ago. She always complained of feeling "bloated" after eating. Well, within a few weeks of the gluten free diet, her intestinal tract improved and that "bloated" feeling went away. We are quite certain she was at least sensitive to gluten based on how well she has responded to the diet. She and I seem to have most all of the same medical problems, so the genetics factor seems to be in full effect.

Best of luck with the gluten free diet! It's amazing how many things gluten is in, but once you get your mindset tuned in about where to look and read labels religiously, it becomes second nature. Eating out is the hardest part for me, since I have other food allergies, (nuts, seafood/fish, soy) that are in a lot of "restaurant" foods too.
Type I Diabetes- 28 yrs. (MiniMed Insulin Pump)
Celiac Disease- 6 yrs.
Crohn's Disease- 1+ year (Nov. '06)

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