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To Be Celiac Or Not To Be?low Total Iga

TexasLady

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TexasLady Newbie
TexasLady
Posted

So I have been trying to decide whether or not I am truly a candidate to have celiac disease/gluten sensitive.

I've been struggling with non specific symptoms for several years (headaches, constipation, heart palpitations, shortness of breath, stomach pains, dizzy spells, muscle/bone pains and aches, muscle twitching/cramping, weird skin rashes only when exposed to the sun, mouth and nose sores). I feel some other issues I have had like after the birth of my daughter having high cholesterol and high blood pressure which took 8 months to resolve, emergency gall bladder surgery and just a general feeling of not being well are after effects of something not functioning right with my body.

My whole life I have struggled with my weight (now at 33 I am 5'5'' and weigh 99 pounds). After the birth of both of my children I lost all my pregnancy weight effortlessly but not many gastro issues. I have asked so many doctors about this and they just tell me this is just how your built.

I would not be so paranoid about my symptoms except I have a history of Lupus in my family (mother and sister both deceased and looking back many of their symptoms mimicked celiac) and I try to stay very watchful of my health. My doctor has tested me for lupus and although I did have a + ANA the anti ds DNA test was negative.

Taking matters into my own hands since my doctor wanted to do the "in" thing and label my issues as anxiety/depression (which I am absolutely not) I did the lovely(stool) test from Diagnos-techs which showed negative Anti-glidan, equivocal for casein, and low total IgA (like my value was 15 and the norm should have been 400-800). Does this indicate a false negative due to the low total IgA? I also ordered the Biocard home blood test for celiac which came back negative, but it did not include a total IgA so I'm thinking I don't probably have enough IgA to test positive anyway.

Any opinions would be greatly appreciated.

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JennyC Enthusiast
JennyC
Posted

Can you get blood tests for celiac and IgA deficiency? Blood tests are more respected by doctors, and I think it will be easier for you in the long run if you have the blood work. If you are IgA deficient, then you will have false negatives for any IgA related tests, including the most specific test for celiac: tTG IgA. I hope this helps! :)

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    1. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
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      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    3. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    4. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    5. trents
      - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Fiber Supplement

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Fiber Supplement

      By trents · Posted

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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