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I'm Not Sure If This Is The Answer Or Not

ruthie

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ruthie Newbie
ruthie
Posted

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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gf4life Enthusiast
gf4life
Posted

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 :)

mommida Enthusiast
mommida
Posted

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?

gf4life Enthusiast
gf4life
Posted
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 Open Original Shared Link . 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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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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