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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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