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Thyroid Disease, Celiac Disease, and You

Journal of Gluten Sensitivity Autumn 2013 Issue


Image: CC--National Human Genome Research Institute (NHGRI)

Celiac.com 01/26/2017 - Many people with celiac disease also have thyroid issues. In fact, it's the most common medical issue that celiacs have. However, just as we were often badly under-served by the medical community, as celiac disease patients before the new guidelines were issued in 2004, now we're often left high and dry as thyroid patients.

Most medical professionals were taught that under-active thyroid is an easy fix with a single accurate test for diagnosis and a simple treatment. New research has shown that for 20% of patients, this is far from true.

Unfortunately, there is wide disparity between how celiac disease is detected and treated because of a dearth of knowledge and curiosity among our medical professionals about current research. This leaves too many of us sick, and greatly reduces our functionality and productivity. Our finances can take a very deep hit when we are left unable to work while being prescribed antidepressants, muscle relaxers, sleep aids, cholesterol drugs, anti-anxiety medication, and IBS remedies when what we really need is access to the very inexpensive thyroid medication that can bring us back our lives.

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Although there is a lot of evidence that current testing standards are inadequate, this year the American Association of Clinical Endocrinologists once again refused to update standards to reflect current research. Most clinical practitioners rely heavily on the TSH test (and the Free T4 test if you're lucky) while the Free T3 test and antibody tests would render vital additional information. Large-scale tests are needed to reaffirm what the many smaller tests are pointing toward; that we need to be treated as individuals, by symptoms, not just as lab test scores.

Like celiac disease, autoimmune thyroid disease most often affects women. Quite a large percentage of us are left feeling exhausted and in pain. Often people with undiagnosed or poorly treated thyroid issues are misdiagnosed as having bipolar disorder. We may also deal with severe insomnia, hair loss, social anxiety, and depression. This is because our cells don't have access to enough of the active form of thyroid hormone that we need (T3). Although research indicates that people need both T3 and T4, most treatment plans only offer the T4 form (such as Synthroid and Levoxyl) and too many patients aren't able to properly convert it to the more active form, T3.

Every cell in the body requires thyroid hormone; it's no wonder that thyroid disease is devastating to so many body systems.

Sadly, patients report being labeled as psychiatric cases when they complain about the deep fatigue, weight gain and psychological issues that can be remedied by proper treatment. They are told that because their numbers are within the normal range that their thyroid disease is not at the root of their problems. Those of us who scratch below the surface have found that the method used to determine the "normal" ranges was woefully inadequate and based on poor science.

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11 Responses:

 
Pat
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said this on
30 Jan 2017 5:06:10 AM PST
Amazing ... Wow! For the last couple of weeks I've been viewing Dr. Izabella Wentz's work. A huge study that went world-wide online, as you no doubt know. The thyroid's time has come. It's been an emotional discovery for me. Last year, when symptoms became insistent, and my thyroid was checked, all the doctor did for me was to give me a life-long prescription of Synthroid. I've been a non-diagnosed gluten-intolerant for over 25 years. What a change in my life that was. Nobody seemed to know much about it when I did my research. Now here we are again, and at no time did anything I read, or anyone I spoke to, mention the thyroid connection. I was my own physician all these years. Dr. Izabella's work is an avalanche of information and help.

 
laura puckett
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said this on
04 Feb 2017 11:59:19 AM PST
I had undiagnosed celiac for 42 years and I have been on a strict GF diet for 10 years. I had problem swallowing since I was a child. I had a ultrasound of the thyroid done in Italy by the private doctor that discovered I was celiac while on vacation there (no doctor in the U.S. even thought of doing any testing in regarding to celiac even though I was very sick). The ultrasound showed- the doctor showed it to me- that one side of the thyroid is very irregular and, being very concerned about it, he referred me to a follow up back home in the U.S. The ultrasound was redone in the U.S. and they discovered I have a cyst in the thyroid but no report of the irregularity. The thyroid level is on the low normal. I don´t know what I should do next as I was told I was fine.

 
Valerie Hufnagel
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said this on
30 Jan 2017 5:55:45 AM PST
This was exactly what happened to me. After 5 endocrinologists, I finally found someone who listened to me... now I'm on Armorthyroid and doing much better.

 
alba piqueras
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said this on
30 Jan 2017 12:54:07 PM PST
Your expertise is greatly appreciated. Can you do an article on osteoporosis? Thank you.

 
Lynne Bunte
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said this on
31 Jan 2017 7:26:04 AM PST
Thank you for bringing this to everyone's attention. It is imperative to find the correct doctor and Endocrinologists do not get it. I finally found a GYN that knows how to test and attends conferences all the time to keep informed about Thyroid issues. My GP asked me if I thought she was stupid and I said yes as she failed miserably when trying to treat my thyroid issues. I am gluten free as I have Hashimoto's and GF has helped to lower antibody count. I am on Nature-Throid and suggest people stay away from the synthetic thyroid meds, they do not work. A web site "Stop the Madness" has excellent information regarding thyroid disease. Thanks again for bringing this important information to the attention of those who are suffering!

 
Janet
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said this on
31 Jan 2017 7:26:15 AM PST
I am on a thyroid roller coaster right now. My levels were low, and then, out of the blue, they were really high. My doctor has been testing at least three thyroid factors, but maybe not all four. Anyway, it isn't Graves disease, and the levels are slowly falling. But what went wrong in the first place? I do have celiac disease, and I believe that I have successfully eliminated gluten (for that matter, for several years, all grains) and many other foods from my diet since my diagnosis four and a half years ago.

 
Amy Mitchell
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said this on
31 Jan 2017 9:50:23 AM PST
I have gluten ataxia and hypothyroidism. I take compounded liothyronine and levothyoxine.

 
Anne Sarkisian, author: Toxic Staple
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said this on
31 Jan 2017 11:33:06 AM PST
I too have just discovered I've been on T4 thyroid meds (no T3) for the last two decades. My TSH level was 2.8. falling just within the high level of 3. Under medicare standard of care you are told it is normal, but a nutritionist I was working with was suspicious and asked that I get 4 other thyroid tests. They were all off. Within a week of getting on a med with T3 along with T4 a hip bursa pain issue that developed from a strenuous hike months before finally cleared up. I'm also doing a detox and have lost some weight, but expect most of the improvement is from the added T 3 which my cells must have been screaming for. As with gluten you must be your own advocate when it comes to your thyroid and health.

 
Marcia
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said this on
31 Jan 2017 2:23:02 PM PST
My journey is so similar and devastatingly worse at the same time. I am a diagnosed celiac with autoimmune skin problems related to celiac disease since 2010. I did everything I was told to do about diet changes, cleaning out my kitchen of everything that may have gluten, etc. My bathroom which was my most decorated room in my house went back to being a normal bathroom after I, too, became normal. Then 4 years later I was diagnosed with breast cancer...no one knows why, there is no connection. Then 2 years later, after I had a PET scan, they found by accident a huge tumor that took over the entire right lobe of my thyroid. I was told it could be likely metastatic and to get my life in order. My surgery was done, it was not cancer per se, it was a dead Hurthie Cell (cancerous) and Hoshomoto (autoimmune tumor). The dead cancer cell happened because of all the radiation I had as a result of breast cancer. Because it was so large and weird they sent it off to John Hopkins to be assured they were correct. Also, it had been there longer than the breast cancer. I asked, how could this be, I had yearly thyroid blood work done, I had no outward mass or lump showing and I could swallow fine. The downside, my Recurrent Laryngeal Nerve was severed in two places. My voice, swallowing and life have been compromised. I can not teach part time anymore, I can not participate in outdoor shows for my jewelry design work...my life has changed, there are no words to express across the lines of my life that are affected. This is not a boo-hoo paragraph, but a wake up call about how deceiving the numbers for Thyroid testing are and one does not know if there is a problem even if one has been judicious in their health care. There should be a more comprehensive test done once a year or every other year that would be covered by insurance. I hope this will help.

 
Debby
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said this on
31 Jan 2017 4:22:58 PM PST
I am also undiagnosed as to what gluten issues I have. As I went GF on my own in one more effort to prevent my allergic reactions. The allergic reactions I had created a hypersensitive smell, which caused me severe nasal problems and headaches. After going GF, most of these symptoms went away. I had over 20 years of being hypothyroid before they tested me for Hashimotos. Once they found I had it, I was placed on armour (or NP). This changed also helped me. Would definitely like to hear that there is more research on the connections of these. I recently spoke to someone else who also is GF and has thyroid issues.

 
Irina
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said this on
02 Feb 2017 8:02:37 PM PST
It is possible to find a doctor that listens, for the most part those doctors are not endocrinologists, but rather family practitioners that deal with functional antiaging medicine. I have celiac and hypothyroid. Had cancer on the left side just a year ago which was taken out. After doing some research about the practices in Europe I realized I may not be converting T4 to T3 and instead had Reverse T3 which acts just like hypothyroid, yet the lab work was fine. I now only take T3 is 3 separate doses 3 times a day. Cytomel is not GF so my doctor has it compounded for me. I feel much better, alert, finally have more energy. You need a doctor who listens to how you feel not just looks at paper.




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