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Test And Doctor

FairySprinkle

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FairySprinkle Rookie
FairySprinkle
Posted

Hi, how do I find a doctor who can test for gluten levels? Can a family doctor do this or does it have to be a specific specialist like an allergist doctor?

Also, how is this test done? Do they do a blood work and inside your butt?

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Guest Kalynn
Guest Kalynn
Posted
Hi, how do I find a doctor who can test for gluten levels? Can a family doctor do this or does it have to be a specific specialist like an allergist doctor?

Also, how is this test done? Do they do a blood work and inside your butt?

I don't know about all PCPs, but mine sent me to a GI doc and he ordered the blood test. I never had the colonoscopy done. I haven't found many (and believe me, I've seen many over the past year) docs that will readily admit that what you have is celiac disease or gluten intolerance.

I believe Enterolabs will allow you order your own tests. They have a website.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Oddly, because I have neurological damage from gluten, I was referred to a GI doc by my vitreoretinal surgeon! The GI doc was fantastic -- he said, let's do the bloodwork today. Do you want to know for sure if it's celiac? I said "yes" -- he said, then let's do the biopsy on Monday. (This was Thursday). It was all a piece of cake. Good luck to you. . . . Lynne

slpinsd Contributor
slpinsd
Posted

FairySprinkle: Where do you live?

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Louisville, KY -- if you live anywhere close, I would highly recommend this practice. My MD's name was Martin Mark. They have on staff a celiac specialist, Dr. Adler, who read and re-read my biopsies and bloodwork. They are awesome. BTW: Biopsies for celiac are down down your throat. They give you liquid to numb the back of your throat, give you some meds to make you sleepy, and a bite guard in your mouth. They thread the tub down your throat, through your stomach, and into your small intestine. My MD took 4 biopsy samples from the small intestine. I did, though, have a colonoscopy the same day, because I had some DEFINITE changes from the usual. I had IBS for the majority of my life, then simply stopped going. Really. Like once every 6-8 days was good. So they did the colonoscopy. I told someone on another thread -- if you have to have both, be advised: They do NOT think it's funny if you ask them that, if they're going to use the same tube, will the put it down your throat first. . . . Lynne

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    • NanceK
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      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!
    • 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

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    • 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.
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