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See My Dr. Tomorrow. What Tests Should Be Done?


jackay

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jackay Enthusiast

Advice please. I see my doctor tomorrow and wonder if I should have the Celia panel of tests run.

This past summer I had a GI panel run of stool and saliva tests. A saliva test was run for Gliadin Ab, SIgA. The result was >100 U/ml with borderline 13-15 U/ml and Positive >15 U/ml. I thought these test results were from a stool sample and I just discovered it was a saliva sample. From the reading I've done I found out a saliva sample isn't accurate. (I read that a stool sample is accurate if it is positive but that a negative result could be false.)

Since August, I have tried to avoid gluten except for slipping for about four days in October. However, my doctor said nothing about hidden gluten and gluten contamination. My symptoms didn't get worse when I slipped, but I was feeling so miserable at the time that I don't think I would have noticed if they got worse. It has been just two weeks since I have tried eliminating all gluten from my diet and only two days since I have not used an old plastic cutting board, teflon cookware and washed my dishes and hands before eating.

Some days my symptoms are better but I have a long ways to go to being healthy. Still suffer from diarrhea, insomnia, anxiety, depression, headaches, muscle pain, hands falling asleep, loud pulse, mental fog, and difficulty concentrating.

Should I go insist my doctor run the Celiac panel of tests since I have tried to avoid gluten? I have paid my out of pocket medical expenses this year so with insurance it wouldn' cost me anything. If I wait and do a gluten challenge next year, which I really don't want to do, I will have to start over with my deductible and copay.


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Jean'sBrainonGluten Newbie

This is really a judgment call. The key is you - will you believe it if you don't have a lab test confirming it? Will you believe it enough to stand firm on your gluten free diet when you have started to feel better? I didn't and it caused me a LOT of problems because I wasn't precise about cross contamination and occasionally just eating something because I hadn't planned and fed myself and got too hungry in a vulnerable place.

If you aren't sure then I would suggest eating a lot of wheat for a week or as long as you can stand it and trying to get a test right before the end of the year. It's a risk because if you have celiac you will get sick as a dog but that will give you confirmation and make it likely that the blood test will give a true result.

I'm tempted to say Merry Christmas but given what I'm advising that seems cynical - you know?

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    • knitty kitty
      @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
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
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    • trents
      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
      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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