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Could It Be Something Else?

#1mommy

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#1mommy Newbie
#1mommy
Posted

I have been gluten free for 6 months now with no results and actually my BM's have gotten worse like undigested food. I still have stomach pain all the time. Something strang happened the other day I ate a meal and felt great. I was the first time in months that I was not running to the bathroom after eating. To my supprise I read the lable and wheat was one of the top ingredants.This was probable one of the only times I did not read first. I was told by a woman that has celiacs that I could have a corn alergy instead. I was diagnosed by blood test and biopsy. The lab that did the blood test had to look it up to see what the needed and said they had not ran that test before. Could they have done the test wrong? I don't understand why there was so much difference.

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CarlaB Enthusiast
CarlaB
Posted

If you were diagnosed with a positive biopsy, you have it!!! Sometimes celiacs have a delayed reaction to glutening and sometimes they become more hypersensitive with a small amount. It's like when you're getting a lot of gluten, your body can't do anything about it, but when you get a small amount, the body wants to eliminate it immediately!

My first guess is that you're getting hidden gluten from somewhere.

My second guess is that you need to cut out dairy until you're healed.

Flor Apprentice
Flor
Posted

Are you eating soy?

ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the other great advice have you eliminated non food sources of gluten? Things like shampoos and toiletries, gluten in hobby or craft items like paints, clays and glues, remodeling stuff like drywall and compound or wallpaper paste? Sometimes as we heal we become more sensitive to hidden gluten aroung us. I kept making myself sick with a shared can opener and pet food, took me over 2 years to figure that out. I hope you get some relief soon but as another poster said with both bloodwork and biopsy positive there is no doubt you are not handling gluten. You also may want to have the blood tests run again, since you did show positive they will be a good indicator of how gluten free you have been.

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    • knitty kitty
      Is this celiac?

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

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      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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