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Does It Ever Get Better?

luceydiana

By luceydiana
in Coping with Celiac Disease

Recommended Posts

luceydiana Explorer
luceydiana
Posted

I'm getting frustrated lately and I was wondering if there is anyone out there with some encouragement. Does it ever get better?? Will we ever feel "good" again? I've been gluten free for almost 6 months now and still have major stomach issues. Will that ever go away?? It's getting very depressing.

Please someone tell me something positive.

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aikiducky Apprentice
aikiducky
Posted

I've been gluten free for almost one and a half years now and I feel great. :) Six months into the diet though I did still feel crummy a lot. I had gotten better in some respects but I also had some symptoms that I didn't have before going gluten free. But nowadays I feel fine unless I eat gluten or dairy. I hope you will soon, too!

Pauliina

mouse Enthusiast
mouse
Posted

My stomach issues are all gone. The only time I get sick is if I get cross contaminated and that is very seldom. I have been gluten free for 2 years and I was much better after 6 months. Could you possibly be getting cross contaminated? Have you checked your lipsticks, shampoos and do you have a toaster that has never had regular bread in it? These are all just suggestions, but you have probably already thought of them. I hope you feel better soon.

flagbabyds Collaborator
flagbabyds
Posted

you should be feeling better soon. It does take a while to make it completely better, but over time you will start noticing positive effects. Just as long as you are cutting out all gluten sources, you should be feeling better soon.

Carriefaith Enthusiast
Carriefaith
Posted

I started to notice some improvement after about six months on the diet, but I never really started feeling better until about 1 year on the diet. During the first year on the gluten-free diet, I felt like you and I was getting very frustrated (I am sure you could find some of my old posts of me wondering what was going on with myself). During that time, I realized that I had issues with dairy products and that I was eating gluten free chips that were contaminated so that probably contributed to the problem. After a year, I started to feel so much better. There is hope!

marciab Enthusiast
marciab
Posted

My digestive problems cleared up about 5 - 7 months into the gluten free and food allergy diets. I did both at the same time, because I was in pain 24/7. Also, stopped eating meat and all processed foods. And I eat organic when affordable.

Symptom relief may have happened sooner if I had realized I was getting soy lecithen and oat bran regularly in my meal replacements powders. I knew they were hurting my stomach, I just figured it was all the vitamins in them. Now, I just use rice or hemp protein and eat healthy.

I'm hoping this diet will eventually help with my CFIDS/FM symptoms too. I've seen a little improvement, brain fog gone, more energy, but nothing concrete yet.

Hang in there ... Marcia

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  • Posts

    • 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
      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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