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My Dr Asking What Tests To Order To Screen For celiac disease! Need Info!

shayre

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shayre Enthusiast
shayre
Posted

HI.  My infertility specialist that we used a while back...is asking for the proper tests to order for screening his patients for celiac disease!  He listened!  I am not knowledgeable on what specific tests he needs to order.  Does anyone knowledgeable know what I can tell him?  After hearing my story since my 2 IVF procedures with him...and now my body is closer to normal...he wants to learn more.  NEED INFORMATION AND ADVICE TO GIVE HIM!!!  Especially if it's related to infertility, hormones and PCOS.  I need an arsenal of articles from reputable sources for him to learn all that he can.  My email is Open Original Shared Link if anyone needs to email me articles.  I am not sure that screening will take care of everyone, but it's bound to hit on a few people here and there.  I wish that there was more that I could tell him about all of us that are symptomatic with NO positive results!  Thanks a million.  Is anyone else shocked that a doctor listened and wants to add it to his practice...WOW! 

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cmc811 Apprentice
cmc811
Posted

I'm still too new at this to have a ton of input but just wanted to congratulate you on getting through to him and benefiting his future patients. That's awesome!

GottaSki Mentor
GottaSki
Posted

Total Serum IgA

Tissue Transglutaminase IgA -- (commonly called tTG-IgA)

Tissue Transglutaminase IgG (tTG-IgG)

Endomysial IgA (EMA-IgA)

Demiadated Gliadin Peptide - IgA (DGP-IgA)

Demiadated Gliadin Peptide - IgG (DGP-IgG)

 

older Gliadin Tests:

Anti-Gliadin Antibody IgA (AGA-IgA)

Anti-Gliadin Antibody IgG (AGA-IgG)

 

Nutrient testing is also important as Celiac Disease prevents proper absorption of many nutrients.  My Celiac Doctor runs the following during the diagnostic process and at annual checks:

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper Zinc

Complete Metabolic Panel - shows various other nutrients

 

Complete Blood Count - can reveal other associated issues like elevated liver enzymes and more.

 

Most doctors do not run all of the above -- but should.

 

If I had my way...everyone with fertility, gastro, autoimmune issues along with anything labeled mental/behavioral would get a full screening....we can dream...one doctor at a time ;)

 

Good work getting one to listen and learn - it is not easy - but the best doctors are open to expanding their knowledge...even when the information comes from their patients!  Each of my doctors is used to receiving updated research in their inbox and at my appointments.  

 

Spread the word -- unfortunately it is up to us to advocate when opportunities are presented.

shayre Enthusiast
shayre
Posted
  • Author

That's awesome, thank you!  I have started to collect data for many of my doctors, but the infertility specialist is the first that I have approached.  He is a very good doctor:)  My new neurologist is more informed about gluten, because he has the same issues.  He says that we are beyond medical borders at the moment.  I am going to forward info to my old neurologist and family physician.  I could still use ANY and ALL articles that any of you can find!!!  You know that doctors like to see studies and hard facts from credible sources!  Keeping them informed of research is a great idea!  I just need to know how I stay informed of the latest research?

GottaSki Mentor
GottaSki
Posted

You can look in the publication section of this forum for some good links or search pubmed for particular items of interest to you.

shayre Enthusiast
shayre
Posted
  • Author

Lisa...do you know anything about which labs are best to run tests?  I read an article about the MD who owns Enterolab, and he has celiac disease.  Other than that...I think that which labs do a better job...makes a difference.  Right?

GottaSki Mentor
GottaSki
Posted

I have never researched particular labs.  Please let me know if your research finds documented issues.  Thanks :)

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      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?

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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!
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