gluten-intollerance diagnosis and confused...

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patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 8/31/2008 11:58 AM (GMT -7)   
Ok, I know some of you guys have experience with this.... I've been reading and researching, and I'm still just baffled about the whole thing, so... here goes:

I was diagnosed with a gluten-intolerance by an "Applied Kenesiologist" on Tuesday of last week. This diagnosis was made by pushing and pulling on my right arm while placing pressure on my abdomen or something, and then sprinkling something on my tongue, and then repeating the exercise. This is weird to me, but traditional methods have left me screwed, so I'm trying to be "open-minded" about this kind of "treatment".

So, as I dive into the internet world of gluten-free information, I find that the term "gluten intolerance" is used interchangeably with "celiac disease". This confuses me! If there is a simple blood test to determine the presence of celiac disease, is it really that "uncommon" that I would not have been tested for this in the plethora of nonsense I've been subjected to over the years? Can it really be that stinking simple?

I understand that such a test is NOT in the best interest of the drug companies, because a "celiac" diagnosis would be completely reversible without treatment by pharmaceuticals. I'm trying so hard to not be conspiratorial, but what on earth? I'm calling my GI in the morning to have my medical file checked for any sign of previous testing and the results. I don't imagine I'll get anywhere with the whole thing, but I figured it's worth asking. In the mean time, does anyone have experience with this that they could share? How was anyone else diagnosed with this? Anything is appreciated!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/31/2008 1:38 PM (GMT -7)   
Celiac isn't gluten intolerance, it's a gluten allergy as far as I know. I don't know about the pulling on your arm, but give it a month and you should be able to tell yourself if you have a intolerance or not...
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


sjs0018
Regular Member


Date Joined Jun 2008
Total Posts : 35
   Posted 8/31/2008 2:35 PM (GMT -7)   
I'm gluten intolerance, it is not Celiac and is not an allergy all are different. There is no good test for a gluten intolerance, I had one done like what you had. I had the Celiace test and allergy test both were negative. I know there are others on here that eat gluten free and have found it to be easy to do it was for me. There is many good books out there on eating gluten free and you will find you can still eat a lot of what you do know, you just have to read labels more.

Veebo
Regular Member


Date Joined Nov 2007
Total Posts : 147
   Posted 8/31/2008 2:43 PM (GMT -7)   
You can be gluten intolerant and not have celiac disease. Celiac disease actually causes damage (inflammation and atrophy) to the villi in the small intestines due to an immune response to the protein gluten. There are blood tests (anti-gliadin IgG and IgA) that can alert a doctor to the potential presence of celiac disease. But it typically is not diagnosed until an intestinal biopsy has been obtained that shows the classic signs of damage caused by celiac disease. Then there is usally a follow up biopsy taken after the patient has been on a gluten free diet to confirm that the intestines have healed once the gluten has been removed from the diet. This site does a fair job of explaining celiac disease, gluten intolerance, and wheat allergies. http://americanceliac.org/cd.htm

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 8/31/2008 4:17 PM (GMT -7)   
I don't have the link, but I read that the blood test for celiac is highly unreliable, and the intestinal biopsy, though more accurate, is not 100%. And as Veebo said, you can be gluten intolerant and not have celiac (intestinal biopsy could be negative for celiac, but you still have issues w/gluten). More and more, it sure seems to me that many people have varying levels of gluten intolerance and by eliminating gluten from their diet, experience marked improvement.

patientspiders, my chiropractor does tests very similar to what you described. Ironically, when my son was about 3 yrs. old my chiro told me he was "wheat sensitive" after doing "muscle testing". We did not eliminate wheat. Hmmmm..... wheat sensitive and a few rounds of antibiotics later.... ....CD. Of course, now on the SCD he gets no gluten.

Yogaprof will hopefully be along to chime in on this. Her story is really something.

I'm certain your doc will do the blood test for celiac if you ask, but I wouldn't put all my stock in it. Rather, eliminate the gluten and see how you feel. Good luck!
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3, a good multivitamin, SCD legal yogurt, weaning off Asacol.
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 8/31/2008 5:08 PM (GMT -7)   
I saw a web site that promised to do tests for immune globulin on a fecal sample. They reported that the general population shows about a 10 - 12% positive response to the blood test for gluten immune globulin and their fecal test showed about 30% of those tested with immune globulins in their gut. The first number (10 -12% for the blood test) I have seen elsewhere and the second one may be just a come-on for their "superior" test - or it may be real. An ELISA test would work on fecal samples just fine, so in principle it could be real.

Those numbers, even if you consider only the first one, shows a lot more of the population is sensitive to wheat than you might think. And if you believe the second set of numbers, then you may as well assume that you are gluten sensitive and eliminate the stuff to test the possibility.

On a slightly different topic, I have seen a couple of acupuncture methods that claim to eliminate allergies to foods or whatever. One is called BioSET and the other is called NAET. They use the muscle testing to determine what allergies you have and then use acupuncture while you are holding the allergen to clear the allergy. The story is that the energy imbalance that is caused by the allergen is corrected by acupuncture. Has anyone here had any experience with this? It sounds too good to be true, but tantalizing.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/31/2008 6:29 PM (GMT -7)   
It does sound too good to be true, but I won't take anything for granted at this point.

I've been doing the gluten-free thing for a week, but now the more I read and research, the more it seems to me that medical professionals want you to be tested BEFORE going on a gluten-free diet. But then, the tests aren't always conclusive (as pointed out), so that might not really get you anywhere... I guess I'll call to see if I was ever tested for the disease, but I'll probably stick with the diet for a few weeks to see what happens, like you all said. Especially since there are folks who tested negative for everything but still find relief from the diet.

Thanks for the links and info everyone... I'll piece it together here one way or another!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/1/2008 7:25 AM (GMT -7)   
here is rather interesting about the gray area of gluten diagnosis.
 
 
I was horribly ill for two years after a dx of crohns, but I had saliva testing by my naturapath and found a gluten intolerance. I tested negative for celiac, but once I stopped gluten I am much better. lots of energy, can eat anything, look better, far less gut pain. life is good!
the way I look at this is that no one needs gluten and I feel better; thus, I don't need a celiac diagnosis.
for lots more info and support, go to http://forums.glutenfree.com/  it is a forum like this one with nice folks!
 
email me if you want to know more, and I am always happy to jump in on these conversations. yp

 
49 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 taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/1/2008 7:43 AM (GMT -7)   
I have some sort of wheat intolerance, but if I eat wheat made with sourdough and take digestive enzymes I tolerate it better.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/1/2008 2:06 PM (GMT -7)   
There are a few ways that wheat can impact your digestion.

1. Wheat and most other grains contain amylase inhibitors which make it hard to digest the starches contained in them. This results in undigested starches entering the gut and feeding gut bacteria, resulting in bacterial overgrowth.

2. The protein in wheat is bound to starch and so it too can be passed into the gut if the starch is not digested.

3. Wheat contains a lectin that damages the gut lining. If there is enough damage, the inflammation that results causes the gut lining to become more porous. The wheat proteins that have entered the gut can then contact the immune system cells underlying the mucous membrane and trigger an allergic reaction to the wheat protein. The immune cells in the mucous lining are more tolerant of foreign proteins to avoid constant activation.

With an allergy developed to wheat proteins, eating wheat causes inflammation in the stomach and gut, especially if the lining is permeable - so we have a self-reinforcing feedback loop that continues as long as wheat is consumed.

Taking digestive enzymes will help to avoid the undigested food entering the gut, but the lectins are still a factor. Since lectins are present in most foods, we have to hope that our systems can tolerate them somewhat and repair any damage that is caused by them. I expect that once an allergy to food proteins is established, it will continue to be present for a long period - a couple of years or more.
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