HSmomof2 Posted June 15, 2015 Share Posted June 15, 2015 I have Hashimoto's with tsh/free t3/free t4 very well controlled with Cytomel and Synthroid. According to my endocrinologist, my labs look 'perfect'. However, I also have fibromyalgia that has me pretty much constantly achy, joint pain, varying levels of fatigue. I also have had GERD for the last few years controlled pretty well by protonix, though I'd like to not have to be on a ppi forever. I've been reading there seems to be a connection between Hashimoto's and celiac and/or gluten intolerance. I'm starting to wonder if my fibromyalgia and digestive symptoms are being caused by gluten? I have two cousins with confirmed celiac, one with Chrons, an aunt with lupus, and my mom and both grandmas with Hashimoto's---a lot of autoimmune stuff in our family. Would it be worth it to pursue a celiac blood panel? I see my regular family dr tomorrow. He'll think I'm crazy and overreacting, but probably would order it if I ask. Or, should I just try a gluten free diet and see if I feel better? Or should I just accept my symptoms are from fibromyalgia and go on as normal? Wwyd? Quote Link to comment Share on other sites More sharing options...
Guest Posted June 15, 2015 Share Posted June 15, 2015 Those two are linked but it's not definite. They thought I had celiac but I 'just' had hyperpermeable intestines and inflammation that is likely Crohn's, not celiac sprue (as far as we can tell). The symptoms can feel very similar, and they are also immune mediated, just not relating to gluten. Short of an intestinal biopsy and blood panels, confirming celiac can't easily be done. But you could go 100% gluten free and see if your symptoms improve. Quote Link to comment Share on other sites More sharing options...
smudge Posted June 15, 2015 Share Posted June 15, 2015 Go grain free- dump all grains for 4 weeks and see how you feel. Got nothing to lose right? Also, you may want to read Wheat Belly Total Health.... 2 Quote Link to comment Share on other sites More sharing options...
LaxMom Posted June 15, 2015 Share Posted June 15, 2015 I think a blood panel is worth doing. Getting to a place where you're entirely gluten free, including hidden sources and cross contamination is hard. It's been over 4 years and I still occasionally find some snuck in. A blood test is easy. Do the easy thing first. 4 Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted June 15, 2015 Author Share Posted June 15, 2015 I think a blood panel is worth doing. Getting to a place where you're entirely gluten free, including hidden sources and cross contamination is hard. It's been over 4 years and I still occasionally find some snuck in. A blood test is easy. Do the easy thing first. This is what I'm wondering. If I should do the blood test first. It will be very hard for me to be gluten-free (and completely grain free may kill me 😉). Quote Link to comment Share on other sites More sharing options...
HeWillSoar Posted June 15, 2015 Share Posted June 15, 2015 I think it sounds reasonable to request a blood test for celiac. If it turns up that you don't have it, why not try gluten free for about a month and see how you feel. Keep in mind, even if you are negative for celiac, gluten could still be causing issues. I tested negative for celiac twice but gluten causes major problems for me. Many people do not have celiac but are gluten sensitive. 1 Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted June 15, 2015 Share Posted June 15, 2015 I would request some allergy testing. I wouldn't test for only one thing. I did discover I was allergic to milk, I did have a biopsy and I do not have celiac. 1 Quote Link to comment Share on other sites More sharing options...
dancingmama Posted June 15, 2015 Share Posted June 15, 2015 I was also diagnosed with fibro and have had a lot of digestive issues. Turns out I'm allergic to dairy, almonds (which I was snacking a d drinking a lot of), and yeast. Removing these three things from my diet have improved a lot of my symptoms, including things I had never considered symptoms before. I'd go with a full-scale allergy panel first. 2 Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted June 15, 2015 Author Share Posted June 15, 2015 I was tested for allergies about three years ago (skin prick test) for a stinging rash I was getting on my arms and face. Was tested for 88 foods and additives. All were negative. Was referred to a rheumatologist who diagnosed it as solar utircaria since it seemed to be related to sun exposure. Was also tested for lupus at that time. Positive ANA, and 'many autoimmune markers' in my blood, but nothing specific besides the Hashimoto's that we already knew about. Quote Link to comment Share on other sites More sharing options...
dancingmama Posted June 15, 2015 Share Posted June 15, 2015 In that case, definitely move on to the next step. Quote Link to comment Share on other sites More sharing options...
Soror Posted June 15, 2015 Share Posted June 15, 2015 I totally agree with LaxMom the blood test is easy, do that first and so where it gets you. However, I would pursue a gf diet irregardless of what the tests say (after you finish them of course) just to see how it makes you feel as you can have non-Celiac gluten intolerance and many say that you should go gf if your Hashi's. I would agree as well that intestinal permeability should be looked at, as well as if your levels are optimal. I know I had a horrible time absorbing nutrients and had numerous severe deficiencies when I was diagnosed with Hashi's. We used a gut support supplement with glutamine (which has some good research backing it) and some other things, my vitamin levels have continued to climb now and I can definitely tell a difference in how I feel. I've noticed that when I eat food that used to bother me it is not so much so now, I'm hoping as I heal my body will do better and better. 1 Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted June 15, 2015 Share Posted June 15, 2015 I would request some allergy testing. I wouldn't test for only one thing. I did discover I was allergic to milk, I did have a biopsy and I do not have celiac. What kind of tests are there for food allergies? What kind of foods can they test now? I was dx with Hashimotos about a year ago and have long suspected wheat intolerance/sensitivity. But, I think there's other triggers too. Everytime I think, "this is the ingredient I'm allergic to", it seems to not bother me so much anymore. It's very elusive. It would be so nice to have a blood test to help me out! Quote Link to comment Share on other sites More sharing options...
craftyerin Posted June 15, 2015 Share Posted June 15, 2015 My mom has diagnosed Hashis and is horribly gluten intolerant. She's never been tested for celiac, though. She maintains a strict GF diet and feels much better. Quote Link to comment Share on other sites More sharing options...
countrygal Posted June 15, 2015 Share Posted June 15, 2015 I have Hashimoto's. My symptoms were resolved for the first few years as long as my labs were ok. After a few years I started getting burning muscles and really bad restless-leg syndrome, but all over (my hands and face as well.) My peripheral nerves were inflamed/irritated.... I also had an itchy rash like the celiac one come and go. I thought they were bug bites on my lower band, hands and feet (in the winter?!) Meanwhile my daughter was getting increasingly worse digestive symptoms and was not growing well at all for 2 years. She had horrible reflux, to the point that she didn't want to eat anymore because swallowing hurt. She did not have diarrhea. She had tests done but not all the right way so she was never diagnosed with Celiac. I'm not sure she has it, but within 2 weeks she no longer had reflux or constant stomach pain (we also limited refined sugar for a while.) I requested a Celiac panel after all this and it was negative. I did a trial and I lost 7 lbs of fluid weight within days. I was shocked at the obvious difference. Not all have such a noticeable difference. I believe the fluid I was retaining was inflammatory and burning my muscles and nerves. I do get sick now when I have gluten :( I believe my gluten intolerance is autoimmune. I don't think my daughter's is. The point of my story is, even if the blood work tests negative, do a trial for 4-6 weeks. Do go get tested. Do the trial regardless. I purposefully ate other grains, sugar, dairy, and potatoes, etc... to make sure I was only eliminating gluten and to be sure that's all I was reacting to. You may have other food intolerances or would benefit from a low grain diet. Hope you find out what is bothering you. 2 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted June 15, 2015 Share Posted June 15, 2015 I just had a friend test negative for celiac but then went to an allergist and tested positive for a wheat allergy. I think it can be important to cover both bases, especially when you know you're getting a bad reaction to wheat. 1 Quote Link to comment Share on other sites More sharing options...
bethben Posted June 15, 2015 Share Posted June 15, 2015 I have a friend who has hashimotos and decided to go gluten free based on research she had done. She was taking thyroid medication and a year or so after going gluten free, her thyroid levels are normal without any thyroid medication. There is some thought out there that gluten can mimic thyroid hormones in certain people. Once my life gets a little less crazy, I am going gluten free to see if that helps with thyroid nodules. I did do it for about 3 months for a while and a lot of random symptoms that don't seem like they would be related (skin issues, feeling my thyroid nodules more pronounced, PMS) went away at the same time. I say going gluten free is worth a try. It really doesn't hurt anything. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted June 15, 2015 Share Posted June 15, 2015 I had a celiac panel done while I was still eating gluten, and then did a GF trial for 6 weeks. Plan your meals before you start. It's great to do it in summer when produce is so inexpensive. :) I definitively know now that gluten is not an issue for me, and sometimes marking stuff off the list helps you sort out the rest of a complicated situation. 2 Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted June 15, 2015 Author Share Posted June 15, 2015 I had a celiac panel done while I was still eating gluten, and then did a GF trial for 6 weeks. Plan your meals before you start. It's great to do it in summer when produce is so inexpensive. :) I definitively know now that gluten is not an issue for me, and sometimes marking stuff off the list helps you sort out the rest of a complicated situation. I was thinking this, too. It would be easier to do over the summer when there are so many more fruits/vegs available. I'm seeing the dr today anyway, so I'll ask about it. 1 Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted June 15, 2015 Share Posted June 15, 2015 What kind of tests are there for food allergies? What kind of foods can they test now? I was dx with Hashimotos about a year ago and have long suspected wheat intolerance/sensitivity. But, I think there's other triggers too. Everytime I think, "this is the ingredient I'm allergic to", it seems to not bother me so much anymore. It's very elusive. It would be so nice to have a blood test to help me out! This link describes the different types of testing http://www.aaaai.org/conditions-and-treatments/library/at-a-glance/allergy-testing.aspx Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted June 15, 2015 Share Posted June 15, 2015 I have a friend who has hashimotos and decided to go gluten free based on research she had done. She was taking thyroid medication and a year or so after going gluten free, her thyroid levels are normal without any thyroid medication. There is some thought out there that gluten can mimic thyroid hormones in certain people. Once my life gets a little less crazy, I am going gluten free to see if that helps with thyroid nodules. I did do it for about 3 months for a while and a lot of random symptoms that don't seem like they would be related (skin issues, feeling my thyroid nodules more pronounced, PMS) went away at the same time. I say going gluten free is worth a try. It really doesn't hurt anything. If she was diagnosed with Hashimoto's then she was found to have thyroid antibodies. Gluten issues would not mimic thyroid antibodies. If her Hashimoto's is in remission then it is likely that her thyroid would behave normally during that time. She still has Hashimoto's. Quote Link to comment Share on other sites More sharing options...
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