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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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