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Gluten Free For Over 3 Months, Feeling Great!

Guest NitaB

By Guest NitaB
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest NitaB
Guest NitaB
Posted

Hi everyone! Been away from this board for awhile. I retired and this summer has been busy with famliy, reunions, birthdays, barbecues, and our county fair with the granddaughter showing her horse! (blue ribbons!!!)

I'm happy to report that after being gluten free for over 3 months, I am feeling great! I have gained a few pounds I didn't need, by discovering I can eat ice cream and chocolate! Oh well, I hope to take it off again! :rolleyes:

You all said it would get easier to do this diet, and I want to say how right you were! I was so angry, at first, that I would never have another pizza, cheeseburger, Krispy Kreme, or birthday cake ever again. But, I got over that! Amazingly to me, I now don't miss those things! The diet just becomes a part of your life! Thank you to all who helped me get going on the right track!

I do have a question. Does anyone know if I get cross contamination, will the villi not heal, or not as fast? I seem not to be bothered by small amounts of contamination. I'm not too careful about this, when eating out. I don't eat anything, that I know of, with gluten in it. But, I don't have any symptoms, now that I've cut the obvious out. Once in awhile, I still get a sore on my elbow, like the ones I feel were DH, that I had for awhile last winter. I'm not sick ever, though, thankfully! But, I'm hoping I will still heal, with these possible contaminations, even if a bit more slowly. I don't go for another Upper GI until Feb. or after.

I have also since been diagnosed with Osteoporsis. Darn, I think I'm too young for this!!! And I itched severely when trying to take the med for it. So, I'm hoping that as the villi heal, I will be able to absorb all that calcium I'm taking! I have taken it for years, but not absorbing it, obviously. I did learn one thing frpm the Dietician, was to take my vitamins throughout the day, so as to help with absorption.

Thanks again everyone, for the great advice and support! :)

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flagbabyds Collaborator
flagbabyds
Posted

Yes cross contamination is a HUGE issue, you will not heal because you are still getting sources of gluten. You think having osteoperosis at your age is young, I have it and I am 14 and was diagnosed at the age 0f 12.

Dwight Senne Rookie
Dwight Senne
Posted

Contamination sensitivity as far as symptoms goes, varies from one Celiac to the next. I know of no comprehensive studies to indicate the effects of villi when consuming small amounts of gluten.

The general consensus seems to be that other than microscopic amounts, even a little gluten is harmful to the villi. Even though you do not get any symptoms, it is probably in your own long term best interests to be as careful and diligent as you can.

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • 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 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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