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Trying To Find Some Answers


Hd7747474

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Hd7747474 Newbie

Over the last year, I have developed and have been struggling with the following symptoms. I've been calling out of work sick, canceling on social events, and just feeling irritable and lousy.

  • Diarrhea--foul-smelling, watery, several times a week
  • Foul-smelling gas
  • Lactose intolerance
  • Abdominal pain and cramping
  • Feeling like I'm about to have diarrhea but can't go

I've also had eczema for a few years now on the back of my scalp, and it has recently expanded into a bumpy, extremely itchy rash in some areas.

When I first when to the doctor, she didn't seem to take me seriously and suggested I had lactose intolerance and/or IBS. She advised me to cut out dairy and keep a food journal of what I ate and when I had symptoms. Although eliminating dairy helped a little, I was still sick several times a week. About 6 months later, she finally took me seriously and did some tests for parasites, thyroid problems, etc. All came back negative. Then she ordered a few celiac tests:

TISSUE TRANSGLUTAMINASE IGG

My value 0.34

Index <0.90

TISSUE TRANSGLUTAMINASE IGA

My value 1.11

Index <0.90

When the tIgA came back positive, I began lurking on this site, reading all up about celiac disease. My doctor finally referred me to a GI, who tested my amalyse, vitamin b12, INR, bilubrin, alkaline phosphatase, albumin and ALT. Everything except for the ALT came back normal (ALT was a little high, although it was high when I had it tested several years ago before these symptoms started).

The GI performed a colonoscopy and upper endoscopy, and the biopsies for both came back negative. The office told me this was "good news," but it wasn't for me because I was desperately looking for some answers.

I am hoping for some guidance from this community, as I'm at a loss for what to do now. My GI doesn't seem to be very proactive, so I feel like I'm my only advocate for my health.

  • What could it mean that I had positive tIgA but negative tIgG and negative biopsies?
  • Should I go gluten free now?
  • What else should I ask my doctor to do/test me for?


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cassP Contributor

there's more tests to be taken for a more complete Celiac panel...

Ttg Iga & Igg is only a small piece to the puzzle- Ttg can also be associated with other diseases (*other members on here can tell you more about that)

your GI should have also tested for:

Antigliadin Iga & Igg

total serum Iga

Endomysial Antibodies

if you're not too sick- it would be a good idea to stay on a gluten filled diet untill you get those other tests- do it soon, so u can get on a gluten free diet if u want.

im sure the other members will chime in too- A LOT of smart people on here that should have been doctors. good luck :)

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      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
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