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karenh

"follow The Diet And You'll Be Fine"

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Well, it's been just over a year since my celiac diagnosis. I was not a long-time sufferer like many, but instead, about 3 weeks after my 4th child was born, started having severe GI problems and was quickly diagnosed with celiac's. Started immediately on the gluten-free diet, and have never cheated (but did get accidentally glutened a few times--not fun). Then, in December, my hair started to fall out. At first, I thought it was the normal shedding of hair you have after having a baby. But, it kept falling out and falling out, until i had patches with very little hair. I called my GI, and was told "If you're following the diet, your hair shouldn't be falling out". But it was. I pushed for testing and the only test that came back abnormal was my zinc, so i started taking a supplement. My hair stopped falling out. But then, I started noticing severe fatigue, moodiness, and irritability. I thought to myself "I'm following the diet. I should be getting better". And in many ways I was. No more GI symptoms. Able to tolerate dairy again. Started having problems with muscle endurance--actually got sore playing BINGO. I'm only 41 years old!

I went to a doctor I trusted, my OB/GYN, and told him about what the GI said and what my symptoms were. Thankfully, he tested my thyroid, which is WAYYYY out of whack. Hmmm, it turns out it's not uncommon for people with celiac's to develop Hashimoto's. I'm now on synthroid, and recently, after a dose increase, am finally starting to feel like myself again.

"follow the diet and you'll be fine"

"you have classic celiac's"

I looked to my specialist for answers...for help.... I did everything I was told, but he never even told me that this could be a concern. Wouldn't even have done the bloodwork if I hadn't pushed for it.

Thankfully, I'm with an excellent endocrinologist now, and feel like I am on the road back to feeling better again. I still struggle over whether to go back to my GI, who DID accurately catch my celiac's pretty quickly, but doesn't seem very good at managing any other part of the illness. And need to make a decision because I'm due to have my celiac's rechecked (a year since diagnosis).

I am most grateful to those with celiac's i have met along the way...this journey would have been so much more difficult without the care and understanding i have come across since my diagnosis.

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I think this is an excellent example of while doing research on your symptoms is so important.

Most of my life I thought I needed thyroid. I had hair falling out, fatigue, dry skin, dry splitting hair, low body temp, low blood pressure and always felt icy cold to my bones. I'd be told my lab results for thyroid were normal. Finally after 35 years I found a smart doctor. She said my lab results were normal but very low normal. With that and my symptoms she put me on thyroid. Made a major difference in how I felt.

So glad you finally found a doctor who actually paid attention to you!

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I think most of us have the expectation that, since gluten seems to be the problem, eliminate and it will be like waving a magic wand. Unfortunately, it isn't so, as we nearly all find out. Once we have cured the other deficiencies in our body, and maybe even before, many of us find we also have other underlying intolerances that have been masked by the gluten response and which we diagnose ourselves through our own form of elimination diet.. We have other nagging symptoms that require additional testing and diagnosis, and end up having to do our own research and tell our doctors what to do. If you have a good doctor who understands these things, I don't care what label he wears--stick with him. Most GI's seem very ignorant about the full ramifications of celiac disease, (some know nothing of it at all) and consider their job done when the endoscopy is performed. Some even advise you to go see a dietitian who may well end up knowing a lot less than you do. Definitely I would stay with the endocrinologist and thumb my nose at the GI.

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these problems can also come up entirely independent of celiac disease, so going gluten free is certainly not going to mean you're now healthy and free of any medical problem for life.

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I think this is an excellent example of while doing research on your symptoms is so important.

Most of my life I thought I needed thyroid. I had hair falling out, fatigue, dry skin, dry splitting hair, low body temp, low blood pressure and always felt icy cold to my bones. I'd be told my lab results for thyroid were normal. Finally after 35 years I found a smart doctor. She said my lab results were normal but very low normal. With that and my symptoms she put me on thyroid. Made a major difference in how I felt.

So glad you finally found a doctor who actually paid attention to you!

Thanks! I don't think people really understand what a big role the thyroid even plays! With all the crazy symptoms i've had i've even had some normal TSH levels. But my antibodies are through the roof. Nobody tested those til the endo. I feel like a different person just since they've upped my dose. Even having less problems with foot pain. So weird! I just wish doctors were more educated on what illnesses can typically occur together. I've seen so much on the internet now that Hashi's commonly goes with celiac's. Why didn't my GI know that???

So glad you are feeling better also!!!! :)

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I think most of us have the expectation that, since gluten seems to be the problem, eliminate and it will be like waving a magic wand. Unfortunately, it isn't so, as we nearly all find out. Once we have cured the other deficiencies in our body, and maybe even before, many of us find we also have other underlying intolerances that have been masked by the gluten response and which we diagnose ourselves through our own form of elimination diet.. We have other nagging symptoms that require additional testing and diagnosis, and end up having to do our own research and tell our doctors what to do. If you have a good doctor who understands these things, I don't care what label he wears--stick with him. Most GI's seem very ignorant about the full ramifications of celiac disease, (some know nothing of it at all) and consider their job done when the endoscopy is performed. Some even advise you to go see a dietitian who may well end up knowing a lot less than you do. Definitely I would stay with the endocrinologist and thumb my nose at the GI.

Do you know often supposed to have repeat endoscopies? I was thinking that my gastro said 6 months to a year, but i haven't been back to him because he blew off my "non-celiac" symptoms. If I'm supposed to get rechecked, do you think I should still go see him just for the GI part of it or find someone else? I never cheat on the diet so I didn't know if I need to get rechecked and don't go back to endo til late January.

And thanks so much for your words of support. Don't know what I'd have done this past year without the help and support of others dealing with this too!!! :)

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