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AandGsmomma

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AandGsmomma Apprentice
AandGsmomma
Posted

Hello,

I have been lurking for a while and just joined today. I had horrible stomache pain off and on for years but it isially went away. Well this year after the birth of y second child my horrible stomache pain came back worse then ever. Went to my primary amd they ran blood work and said I had pancrititis and had to see a gi. If it wasnt my pancreas then it was probably a chronoc pain issue that I would just have to deal with the rest of my life. The gi was just as helpful to run a million tests and an endoscopy to tell me I have a sensitive stomach and to tale 80 mg of Omiperzole a day and anti depressents. I refised the antidepressents and would not accept its a chronic pain and all in my head. I went for accupuncture and she suggested I go off wheat simce I have a family history of Celiac. What a difference! I was pff the acid reducer in days and dont have horrid stomach pain, headaches, heart burn or bumps on my legs without gluten. Now I am having a hard time not being angry at all the invasive testing. I later found out I have a bad vitamin B, D, and Calcium deficiancy and that my high liver enzyimes where not due to fatty liver.

Thanks for all the info so far and I look forward to coping and learning as I heal.

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GFinDC Veteran
GFinDC
Posted

Welcome to the forum! :) Missed diagnosis is very common. Most celiacs in the USA don't know they have it. Stick around and learn with us. We are a very freindly group when we aren't getting over being glutened. :)

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
    2. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the...
    3. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
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      My only proof

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go! I'm certain you'll feel much better. Yes, supplementation is a good idea even if you're healing and gluten free. The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities...
    5. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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