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Can It Really Be So? All Of These Years!

DivasDare

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DivasDare Newbie
DivasDare
Posted

Hello,

I am new to the forum, and also new to possibility that my many years of pain, hair loss, etc. could be from Celiac disease. Years ago it started with my hair. I thought it was my thyroid went through lots of tests... nothing. All along I kept using my wheat based hair products. Next I started having these unexplained pains in my stomach, side and back. I knew it was my gall bladder. I had test after test.. nothing. I was told it was IB and well anything could be the cause, take more fiber and drink lots of water.

I did this... my friend suggested Benefiber, it worked for her. I couldn't figure out why my system seemed to all but shut down. What is wrong with me I wondered. I stopped taking it and was to embarrassed to say anything. I made my doctor look for ulcers... nothing in my blood work. I just dealt with the pain up until this year when I felt like I was going to DIE.

Again, I tried more doctors. I went to a cardiologist just to make sure that my heart wasn't giving out. During our conversation I mentioned that I had IB, but couldn't figure out what foods it was because each time I eat chocolate or caffeine, I was ok, but other stuff like organic cereal I felt like I was going to die. She casually mentioned, "are you gluten intolerant?" I never heard or thought of it. So back to my allergic who was treating me for an allergic reaction that ended in the rash from hayle. We still could not find a reason. He just gave me zantac and zyrtec.

My allergy tests came back negative for gluten/wheat allergies... so I had the best cherry tart and almost DIED of pain... my joints.. everyone of them were hurting along with my stomach and I had chills and a headache. What is going on? If it was not for GOOGLE!

I went back to the internet and with the help of a friend we started reading more about gluten and cealiac. I had no idea that wheat was in EVERYTHING... my vitamins that I took everyday... yes and I was in pain but never stopped to associate it. The flaxseed I was putting on my food had traces of wheat. The triscuits that I ate EVERYday and the cream of wheat.

Ok, this is too long, but I am just happy to find this site and tell someone truly what I have been going through. I could not tell family or friends, they thought I was crazy complaining and doctors just treated whatever was in their pervue.

Yesterday I went to a new GI and had the blood work... please keep your fingers crossed and pray for me that this is truly what has been going on with me.

Thanks for reading!

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ang1e0251 Contributor
ang1e0251
Posted

Welcome to the forum! I'm so glad you have found your first answer! I felt the same when the idea first came to my attention. Can it really be this simple? Can I really just change my diet and be healed? To me it was a miracle. I hope it all works for you. Keep us posted and ask anything you need.

Lisa Mentor
Lisa
Posted

Welcome!

These are the tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Hope you find your answers soon.

ranger Enthusiast
ranger
Posted

Welcome and I hope you find the answer. My bloodwork came back negative. I havn't eaten gluten for 8 months and never will knowingly again. Listen to your body.

DivasDare Newbie
DivasDare
Posted
  • Author

Thank you all. I am taking it one day at a time. I hope that this is the answer and that the damage isn't quite as bad. I really would like to see my hair come back if possible. Girlie stuff... :P

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      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      @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...
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      High DGP-A with normal IGA

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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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