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I think I officially have Gluten Sensitivity
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Trymester posted:
I started having side pains and digestive problems 2 years ago. I just turned 26. I kept denying this gluten intolerance thing for as long as possible.

How could I have lived for 24 years as a big-time bread eater (I really love(d) my breads) and not have experienced any issues at all. Since 2 years ago, I have had endoscopies, colonoscopies, HIDA Scan, Gastric Emptying Scans, Cat Scans, and MRI done, and other than some Gastroparesis, everything came up normal. Blood tests and biopsies all seemed to suggest no Chron's, or Celiac Disease stuff. I finally went ahead and did the Enterolab tests, and these were my results (below).

Is it possible that these tests are wrong, (i.e. of course they'll find Gluten Sensitivity, that's what they're payed to look for), or is it time to freak out everyone that loves and cares for me, by telling them that I can no longer eat bread? I would really appreciate any help or words of encouragement. Thanks.
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A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 36 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 10 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 739 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow's milk) IgA 10 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0319

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,-)

Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

Interpretation of Fecal Anti-casein (cow's milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 other than by HLA-DQB1*0201, or DQ3 other than by HLA-DQB1*0302). Furthermore, HLA-DQ2 genes other than by HLA-DQB1*0201 can be associated with celiac sprue in rare cases. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

For more information about result interpretation, please see http://www.enterolab.../FaqResult.aspx

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: American Red Cross
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab
Reply
 
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sheba_q responded:
As much as you want to be in denial, EntroLab has a really good reputation - if they found that you have gluten issues, then you have gluten issues. You should know as well as anyone that false positives just don't happen.

Hopefully CalGal will see this as I know she had a copy of Trudy's list of gluten-free alternative. There are a lot of options out there nowadays.
 
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CalGal37 responded:
Trymester, hate to say it but welcome to the land of gluten issues. You have gluten problems - elevated IgA gliadin which indicates celiac disease. You're not the only one who has eaten gluten all their lives and finally found out they've got issues. There was an article in Medscape just a few days ago talking about 'adult onset' celiac. It's becoming more frequently diagnosed.

Yes, these tests are designed to find gluten issues, but Enterolab has a wonderful reputation. They're often able to find the cause of GI issues when all other tests have failed, so although I know you don't think you're very 'lucky' right now give it a bit of time and a diet change and you may find you get your life back.

You've got a darned good 'case' of fat malabsorption, too, and you're at the high end of the casein 'normal' scale.

The whole list of results really suggests you're reacting in an autoimmune fashion to the gluten found in wheat, rye, barley and possibly oats. You MAY be reacting to casein, but that's not clear at the current time.

I'd really suggest you start by cutting out ALL forms of gluten and casein for at least 8 weeks and see what changes you find. At the end of that time, you MIGHT consider adding back casein and see if symptoms remain absent or re-occur.

Two of the leading causes of fat malabsorption are celiac and pancreatic problems. If you're 'clear' in the pancreas side of things..........well, I think you can figure out where I'm going with this line of thought.

Let me find the link to the medscape article and post it for you. I've got a list of Trudy's gluten-free foods. I'll hunt it up if you would like..
 
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CalGal37 responded:
Trymester, if you're not signed into Medscape, do so and then go to the celiac resource board at: http://www.medscape.com/resource/celiac-disease

Read through some of the more recent articles there - also the one one diagnosis of celiac is up 4-fold, and celiac in 'the elderly.' You're not elderly, but it gives you a good overview of celiac being found more often in adults and not just babies/children.
 
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Trymester replied to CalGal37's response:
CalGal, you had told me 1-2 years ago to look into the gluten issue and I of course was very stubborn. I am still admittedly stubborn. Still, I am tired of living with problems. I will go gluten and casein free now. Then I will reintroduce gluten and casein for the first week of December (gf is coming for a week from overseas and this is realistically not something I want to tell her yet). then around the 9th of December I will go COMPLETELY gluten and casein free.

Do you also recommend I look at the Celiac website? You know the first one that pops up in Google.
 
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CalGal37 replied to Trymester's response:
Trymester, I really wouldn't recommend you reintroduce gluten based upon the number in this report. I think you're going to have to accept the fact that gluten is going to act like a poison in your system. But if you're positive you want to do that, don't reintroduce both, please. You need to find out how/what the casein will do. So you've got a lot of weeks coming up that you're going to need to play guinea pig with your body. Once you're completely GF and CF for several weeks, then add ONE back - I'd suggest casein and see what happens. After a several week trial, go back to completely GF and CF for several weeks, get that as stable as you can, then (if you really want to chance it) re-add the gluten and see.

If you add back both at the same time, you'll never know what's what.

Hate to tell you this but with all the people I've worked with on this type of thing......I say this and they never believe me until AFTER they do it, but...........if you clear out the gluten (or casein) and it's a problem for your system, when you reintroduce it you're going to be more sensitive to it than you were before. In other words, it's going to hit you faster and more severely than it did when you were on it constantly. And that's not going to be pleasant.

Celiac websites are pretty darned good. So try to browse through whatever you feel you'd like to look at. Don't get overwhelmed - easy to say and hard to do. It's going to seem to be almost impossible at the beginning, but I promise you it will get easier. And make sure to look for 'hidden' sources of gluten - like soy sauce etc. It's all over the place! Do you want me to post Trudy's info on going GF?

Don't feel bad about being stubborn. Everyone is. When I tell some people they might have a food issue, I've had people walk out. They could be gone for a year or so and in that period of time they may have 'gone through' several types of specialist docs. When they come back, they're not happy but 'kind of'' willing to investigate the food angle. When they do and they feel better they're happier, but more than happy to try to 'cheat/challenge' the fact that they have a food issue. After a few times of getting really sick, ideas change. It's human nature. None of us like the fact that we can't eat what we want, but.............


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