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ana

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ana Rookie
ana
Posted

I decided to go ahead and see the Gastro Enterologist and discuss the biopsy. In the meantime i've got the bad pains in my stomach and i've developed a new symptom i haven't had before ever. my lower groin/intestinal/stomach area has shooting pains that go down my thighs. it's kinda scaring me. I'd read a mention about tingling hands and legs.. is this pain part of that? my hands and arms tingle, and hurt a lot, i can't hold the steering wheel for very long when I drive, i alternate hands because my arms tingle. I thought i had carpal tunnel syndrome and now i wonder if it's celiac.

I'm extremely tired these days, lots of brain fog, I had a 5th root canal in 5 yearsa couple weeks ago. i have had constant watery BMs for months. (and then it alternates with constipation, go figure). in 1999 I lost a lot of hair, to a point i had shiny spots in 5 areas, some about the size of a grapfruit. no diagnosis on that, it just happens says the doctor. i was anemic at one point. had pneumonia 3 years in a row.

but im not anemic anymore, i'm not underweight and my thyroid is doing well and all in all i'm in perfect health.... those are the reasons my doctor thought i couldn't possible have celiac.

when I go talk to the specialist doctor, do i tell him all the symptoms i've had over the years? do i just wait for him to ask? I just am wondering do I approach him as though he's never heard of this disease and educate him? it seems like most of you all had to tell your doctor about the disease. I wonder why i am going through the biopsy, my husband asked me, why bother? just go on the diet, my mom too.

I guess it's good to have a definitive answer? I'm full of questions now that it's been 3 weeks since my blood test came back positive, i'm accepting of it more now.

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Guest zoomom
Guest zoomom
Posted

I think I agree with your husband. Since you already had a positive blood test, I would not put myself through a biopsy as well. Unless your doctor is looking for something other than celiac disease, I'd just switch my lifestyle to gluten free.

Hang in there, it will get better with time. :)

Robin

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      Is this celiac?

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      ttg iga high (646 mg/dl) other results are normal

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      Fiber Supplement

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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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