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How long to try gluten-free diet?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Jenny, Feb 10, 2010.

  1. Jenny

    Jenny Senior Member

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    Absolutely June. I didn't really mean random - what I do is when I hear of something that people say is helping them I do a bit of research on it and if it looks promising I put it on my list to try. Then from time to time I look at the list and pick something new to try. That choice is almost a random one.

    Yep, hope is just so important:Retro smile:
     
  2. IntuneJune

    IntuneJune Senior Member

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    BREADS....................GLUTEN-FREE

    My husband and I are now retired. He has taken up the hobby of cooking/baking. How lucky am I on that account especially since I have low back and feet issues that make standing for more than a few minutes extremely painful.

    I was diagnosed 30 years ago with FMS. Also, had at that time what I believe to be mild (? early) POTS symptoms. Then I was diagnosed with multiple food allergies, wheat, corn, yeast, soy, citrus. Once those were eliminated from my diet (all at once) the drop dead-on-the-spot exhaustion POTS cleared up. I continued for a period of time, after that, with pain being the major symptom, although exhaustion was always present. Co-existing were the common culprits including IBS.

    Over the years I learned I could cheat a bit with allergies. I only cheated with pasta. Raising a family, working, cleaning, cooking left litte time and energy to cook more than one meal at a time. When we had spagetti, I dug in.

    Years later my IBS symptoms hit an all time high. Back for repeated testing which revealed blunting of the villae on endocopic testing and again the microscopic colitis on colonoscopy. Meds did not improve my symptoms, I lost 30 pounds. Testing for celiac disease although revealing I was 33% more apt to pass the problem along or develop the problem, did not reveal I was suffering from celiac diseae.

    Out of desparation, I put myself on a gluten-free diet. (Why did the doctor not suggest this after he saw the blunting of the villae). BINGO.

    I also called the lab that did the testing, spoke to a tech, told him I told the doctor at the time of testing that I was on a wheat-free diet, and the tech said, well, your test is invalid for celiac disease as you must be eating wheat for the test to accurate.

    Now, I was not gluten-free, at that time, but wheat- free.

    Another point: With our immune systems not functioning, the usual testing -- looking for antibody/antigen response may not be valid anyway.

    So, I believe, if you suspect a wheat/gluten allergy, don't rely on testing, try a gluten free diet. It is very time consuming and frustrating in the beginning, remember tooth paste, lotions must be gluten-free also.

    My mind really wandered...... breads..... my husband is baking bread, delicious...... I have a yeast allergy, so it is even more difficult, but we found some recepies that are working well.

    He bakes many loafs at one time, we freeze 1/3 of a loaf at a time. Also, I ration the bread so it lasts longer.

    When I was first diagnosed with a wheat allergy, there were very few flours on the market and I tried the bread making. My sons could use the results for a hockey puck. Thirty years later, the products are now on the shelves.

    June

    SIDE NOTE: On reading my post, I did not mean to imply I believe POTS is allergy based. If it were, we would know that by now, surely. No, it just happened to happen at the same time. Now, did helping my immune system by off-loading the auto-immune allergens give it a chance to work on other unknown pathogens -- maybe early invaders -- that could contribute to down-the-line POTS symptoms...... who knows..... what we do know is that it is not that simple.

    Just wanted to clear that up, there is such a differentiation between exhaustion and drop-on-the-spot-literally..... Having been brought down to my knees on more than one occasion, gave me insight.

    My words are so inadequate.
     
  3. IntuneJune

    IntuneJune Senior Member

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    Ahhhhh, Jenny, I read more into your post than was there!

    June
     
  4. Jenny

    Jenny Senior Member

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    My fault June - I shouldn't have said random.

    Thanks for your interesting post above - how long after you went gluten free did you get improvement?

    And how do you know if your brand of toothpaste contains gluten? Mine doesn't say it has, but doesn't say it doesn't have it either!

    Jenny
     
  5. IntuneJune

    IntuneJune Senior Member

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    My IBS symptoms at that time were severe, I noticed an abatement almost in 24 hours, if the symptoms were not so severe, the improvement would be more subtle. It was over a year before the symptoms were under much better control, this is due to the villae in the gut having to regenerate.

    There is a long list of ingredients we must avoid, these are listed on various websites Only by reading, also many of us shop will our cell phones and call from the aisle of the store the 1-800 (toll free) number and talk to the manufacturer.

    Fun, fun, fun.

    June
     
  6. Jenny

    Jenny Senior Member

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    Update on gluten free diet

    Well I was gluten free for about 5 months, with just a couple of instances were there was nothing else to eat but bread. No improvement - in fact I've been having some of my worst days ever in the last few weeks.

    Have just had the results of a urine test which tests for gluten and casein peptides -results were negative for gluten but positive for casein. (I'd been back on gluten for a few days as I wanted to make sure it showed up in the test if it was a problem.)

    I've posted more on this here:

    http://www.forums.aboutmecfs.org/sh...gluten-peptides-and-IAcrGly&p=90073#post90073

    Jenny
     

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