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How Long Does Recovery Take?

Super Bellybutton

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Super Bellybutton Rookie
Super Bellybutton
Posted

I've been off gluten, AFAIK, for about 3 weeks now. How long does it take to be relieved of symptoms?

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lorka150 Collaborator
lorka150
Posted

Everyone is different. Most people, I have discovered, have felt a little bit of improvement int he first month then hit a bit of a standstill. I went gluten-free about a year ago, casein free since about November, and am still not feeling up to standards. It gets better as time goes on, but patience is a key factor.

GlutenWrangler Contributor
GlutenWrangler
Posted

Enterolab told me that most people don't see much improvement for 3-6 months. It's only been 7 weeks for me so far. Good luck.

-Brian

Sarah8793 Enthusiast
Sarah8793
Posted

Around 2 months I felt a lift in my symptoms and more energy returning. Still have symptoms but seem to be getting better.

Guest cassidy
Guest cassidy
Posted

I felt better after two weeks. At that point I could tell when I was glutened because I would feel like I used to feel all the time. In the beginning I glutened myself a lot, so I would have a couple good days and then feel bad again. It took about two months for me to find all the hidden gluten in my shampoo and cosmetics and to make sure there weren't bread crumbs on the counter when I prepared my food.

Three weeks isn't that long. Have you glutened yourself at all? Have you been very careful about cc and checking all products?

I find that it takes me 2 weeks after being glutened to feel better again.

eleep Enthusiast
eleep
Posted

Ditto on the 2 weeks after being glutened.

I thought I started feeling better within a week, but then had a low -- had to get all the personal care products sorted out. Since then, I've been feeling a steady upward climb and I would say that this month is the first month I can say I feel distinctly, irreversibly better.

Super Bellybutton Rookie
Super Bellybutton
Posted
  • Author

But topical gluten shouldn't really affect me since it is not absorbed.

I've been checking on my vitamins and such and foods and they are all gluten free (I emailed the manufacturers to make sure).

The only thing is that my mother just doesn't understand. She thinks you should eat more of it to outgorw it. Even my eyes roll on top of rolling my own eyes when she says that. So I get into these fights about not eating what she cooks and such.

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lorka150 Collaborator
lorka150
Posted
But topical gluten shouldn't really affect me since it is not absorbed.

yes, but check certain things... shampoo/conditioner/body and face wash can get into your mouth in a shower. handsoap and handcreams and whatnot are on your hands. nailpolish can chip off into cooking/baking, or if you bite your nails. and so on.

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    • knitty kitty
      High DGP-A with normal IGA

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    • captaincrab55
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      By captaincrab55 · Posted

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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 😅
    • 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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