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I'm Not Sure If This Is The Answer Or Not
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I just found this site today. I'm relieved to hear that other people have similar digestive problems and survive them somehow! I'm 24, and my digestive problems began when I was 21, a couple of monthes after I was hospitalised for severe depression and put on medication. I've since been diagnosed with bi-polar II disorder and am on mood stabalisers. That problem is pretty much taken care of, but my digestive symptoms have just gotten worse. I developed an intolerance to dairy, had frequent diarea, have stomach cramps gas and bloating and recently sharp pain on the right side of my stomach. And recently my eyes have been super itchy. Constant fatigue and mental fog definately.

I worked with a dietician for a year, she said I was suffering from malabsorbtion and thought if we eliminated dairy and a couple of other things (soy, red meat) I would stop having all the digestive problems but I never did. She thought about eliminating wheat but I was very much against the idea, thinking it was one of my last "comfort foods". I never knew before browsing this site that lactose and gluten intolerance often go hand in hand.

I am seeing a gastoentorologist in July, which is way too long to wait in my opinion, but I live in Canada where there is a shortage of any kind of specialist. It will be free but in the mean time I am trying to cope. I'm seeing my general physician tomorrow. I have been working towards going on a low-glycemic index diet (www.gidiet.com for anyone who wants a peek) which is low in grains anyways, and can be done gluten free. I'm seriously considering going gluten-free to see what would happen. My only worries are the increased cost of groceries and the increased time and planning that would go into food prep. I'm on a student budget, living with my fiance who's also a student, it's really a bad time for such a big change but I'm starting to feel so crappy with all these symptoms that it might just be worth it. Any thoughts or suggestions would be welcome

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My suggestion to you is to not go gluten free until after you see the specialist in July. I know it is a long way to wait, but you could mess up your test results by going gluten free before the tests,even if it is only for a short time. I spent two years fighting for a biopsy, once I knew that gluten was most likely my problem, and I finally gave up and went gluten free, only to have the doctor agree to a biopsy two weeks later. Now during my lifetime I had been gluten free for a few time periods of about two weeks to two months, while trying different weight loss diets, and according to a book called "Dangerous Grains" by James Braly and Ron Hoggan, it can sometimes take as long as 5 years for the damage to return in the intestine enought to diagnose Celiac Disease after a person has been on a gluten free diet. So rather than take chances with the testing, not to mention a few months of higher food costs, you would be wise to wait. If you end up getting terribly ill before July, then you could probably just check into a hospital and get the tests done then. Hopefully it will not get to that point.

By the way, I did go back on gluten for two months, and my biopsy still came back negative. I had testing done by Enterolab that says I do carry the gene and I am producing antibodies consistent with gluten intolerance, so I do know that is my problem. And I feel much better gluten free...

God bless,

Mariann :)

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I went gluten free about 2 1/2 weeks before the biopsy, asked the doctor if that would mess the test up. He said "no this test is so precise that nothing could mess it up" Got the results back - negative. Took one bit of a caramel candy-guess what? I think the test was WRONG!

Is there any testing that can be done on a gluten free diet?

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I went gluten free about 2 1/2 weeks before the biopsy, asked the doctor if that would mess the test up. He said "no this test is so precise that nothing could mess it up"

Your doctor was wrong. The lining of the intestine can heal in as little as three days! So 2 1/2 weeks could certainly cause a false negative. The only tests out there that can show if you have Celiac Disease while on a gluten-free diet that I know of is the tests offered from Enterolab . And even then it usually can only tell from the stool sample for up to a few months. You could ask Dr. Fine (head of Finer Health and Enterolab) if you should still get the stool test or just get the gene test. The gene test cannot tell you if you have an active case of the disease, but can tell you f you carry the gene(s) that cause it. It is recommended that you still go gluten free if you have the gene to avoid getting the disease later, but if you have symptoms that improve on a gluten free diet, you are most likely gluten intolerant.

I suggest you check into the tests at Enterolab, or ask your doctor for a gene test. If your doctor is like mine they won't believe the Enterolab tests. I do, and I told my doctor I didn't do the tests for her, I did them for me and my own piece of mind! :)

God bless,

Mariann

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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