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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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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