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Vitamin Supplement Suggestions


cinderellad

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cinderellad Newbie

I have been symptomatic for 2 1/2 years but only recently diagnosed. I had negative blood work and positive biopsy. My biopsy actually read "treated celiacs disease. This may be because my rhuematologist mentioned that he felt I had celiacs or Crohns disease and I somewhat altered my diet (breads, pasta, bakery items). A few years ago I had lost about 10 pounds, my hair starting falling out and I had horrible knee pain. The weight and hair loss were attributed to "stress" and the knee pain was thought to be arthritis due to years of running and cartilage damage. After being seen by two orthopedist, having Hylagan injections and no relief I was sent to a rhuematologist that evaluated me and referred me on to a gastroenterologist. I also had 9 months of stomach pain, and woke most nights in a sweat so sleep deprivation became an issue also. I started to see a therapist in the middle of all of this because every time I mentioned my symptoms to friends/family they informed me that it was "stress" and I was doing this to myself. I began to think I must be really nuts if I could inflict all of this on myself and not be able to get it under control. After being on the diet for the past 3 weeks, my pain is mostly gone, the night sweats are gone, my hands are not swelling , I can almost bend my toes painlessly and I am sleeping better. However, my hair is still falling out, I am very tired, and my gums have started bleeding when I brush. If anyone can recommend any vitamins/dosage I would appreciate your help. I currently take a multivitamin specifically for hair/skin/nails and glucosamine.


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ianm Apprentice

Welcome. I find liquid minerals to be the best thing for me. I get the New Vision brand. www.newvision.com. Liquid vitamins didn't seem to make much difference for me but some people here swear by them. I take vitamin pills that are gluten-free. I used to get night sweats by the bucket full but those are gone now. 3 weeks is not enough time. It seems to take about an average of 3 months for things to really improve and a good year to become healthy. Keep at it because it is worth it.

celiac3270 Collaborator

Centrum is gluten-free and I'd recommend that.

I'd also recommend that you start taking a folic acid supplement

Lesliean Apprentice

Isn't it like a wonderful miracle to feel all around better? Celiac can lower bone density so while the intestines heal it can help to be careful to get enough calcium. Anemia also is common as is B vitamin complex deficency, especially B12. Some people take sublingual B12. I like Centrum Silver because it is cheap and gluten-free. Some people like to add fish oil but I forget what they are adding back-just that they said it helped a lot. I love glucosamine. My knees don't crack anymore. Maybe it would help your joints. I know someone with arthritis (a common side effect of Celiac disease!) who found great relief in glucosamine (1500mg a day). If your stomach gives you trouble, some people like DGL licorice which is sold in health food stores and helps with the gassiness or burping. I drink a lot of green tea and medicinal teas like ginger and licorice.

My running was getting so difficult I thought maybe I was just getting old, but it was really just Celiac disease and I feel better than I have felt in 10 years.

Leslie

KaitiUSA Enthusiast

I like the liquid vitamins especially while intestines are healing because of the way it absorbs in your body. I use Liquid Vitamins Plus by Utrition.

It is probably good to take sublingual B12 vitamins too.

Other things that help are probiotics and enzymes...with the combo of what I took while I was healing it really gave me a boost.

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    • captaincrab55
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    • rei.b
      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
      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
      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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