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Hashimoto's For 15 Years Now Celiac..where Do I Go From Here?


mechayamom

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mechayamom Newbie

Hey everybody....this is a great website and I am new to it.

Thanks for all the support!

Question to throw out there.

I have had Hashimoto's thyroiditis for 15 years and I am on 200 mcg synthroid.

I was presenting with iron deficiency (actually iron depletion because it is so low), so my Dr. sent me for an endoscopy.

The GI said that it showed villous atrophy and ran the IGA and IGG and TTG blood tests which came back positive and off the charts high.

Am awaiting for the results of the biopsy to see what that says.

Here is the dilemma.

I have no iron in my system....what type of doctor do I go to for coordination of care now..I need an endocrinologist, celiac guy, and a nutritionist.

Should I be looking for an immunologist?

Any advice is greatly welcomed.

Thanks.


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MaryJones2 Enthusiast

Welcome!

Hashimoto's, Iron Deficiency and Celiac often go together so a GI (and/or endocrinologist) should be able to manage the iron deficiency. It's quite common for newly diagnosed celiacs to have anemia. The doctor who sent you for the endoscopy sounds like a good starting point for coordination of care.

GFinDC Veteran

Hang around here and read, read, read! You can learn an awful lot about the gluten-free diet right here on this forum. What you need to do is get on the diet and heal your gut. Once your gut heals your ability to absorb nutrients/vitamins should improve. Some people get shots for vitamins at the beginning, since the malabsorption can keep you from getting full benefit from vitamin pills. Also some liquid B-12 is a good idea, it is absorbed in the mouth.

A simple whole foods diet is a great way to start out. Avoid processed foods and make everything from scratch at home. Hashimoto's is not rare for the people on this board, we have several people with it. Some have reported their thyroid medication level went down after they were on the diet a while and healed up some. Keep that in mind over the next 12 months or so as you may need to adjust your meds also.

when thinking about gluten, remember it is used in many products as a stabilizer and a filler. So vitamin pills / meds may have it for that reason.

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    • NanceK
      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
      @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
      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.
    • 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.
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