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JenPD

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JenPD Newbie

I am new here. Below is my history and a couple of questions. Sorry, it's long.

When I was about 17-18 I had mono a couple of times during the year. I have always felt as if that virus set off something in my body. Right after that, during my first year of college I began having very odd symptoms. I had joint/muscle pain for no apparent reason. I had horrible headaches and I was iron deficient. The iron deficiency did eventually resolve with treatment. The joint/muscle pain and weakness and the headaches lasted for several years.

When I was about 23 years old I developed severe hives/angiodema. During all this time, in addition to these symptoms, I also had some very strange GI symptoms. I was nauseated about 90% of the time. I also had alternating C and D. I lost a great deal of weight while in college and could eat anything I wanted without gaining weight (when I felt like eating). During this time I saw a couple of different doctors and they could never determine the cause of any of my symptoms. They all just wanted to tell me it was stress and/or IBS. I got tired of being told it was all in my head and lived with it for several years.

The most disabling symptom I had was hives so when I was about 30 years old I started seeking medical help again. I eventually ended up with a wonderful allergist who helped me a great deal. He suggested a possible link to thyroid disease. I did some research on my own and did find out that there is a link between hives and thyroid disease. Unfortunately all my lab work was always normal. I kept insisting on the tests until finally my TSH went out of the


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mommida Enthusiast

If you go to a Gi you have to keep eating gluten for the testing.

If you start the gluten free diet and it helps you, it would diagnostic evidence of at least gluten sensitivity/intolerance.

nicolebeth Apprentice

Hi, I'm sorry you're going through this! I have chronic hives, too, though not as long as you. I've had them since October 2010, and the previous time was in 2003 (for about 4-5 months). I am hypothyroid--though, supposedly just postpartum thyroiditis. Thankfully, the blood work for everything was normal. I was "diagnosed" with IBS back in 1994 (when I was almost 22) after an Upper GI. I've had GI issues off-and-on (bloating, gas, constipation, etc.). When I learned about celiac, it made sense. Then, I also read about the chronic hives and celiac connection. Well, my blood work for celiac came back normal. I don't eat a huge amount of gluten on a regular basis, but I was definitely eating it for the month prior to the blood work (not sure if it was three slices a day or not).

Since the hives weren't going away, my doctor agreed that I should try being gluten-free because of the gluten intolerance/thyroid connection. I have not been perfect about this (and have been eating gluten the past few weeks). To be honest, in the month of gluten-free (not a gluten-free household), I still have had hives. Gluten doesn't seem to be a trigger. I've tried: no fish, no eggs, no gluten, no soy (also because of the thyroid connection). I'm going to go back to the no gluten since I feel better without it (more energy, less anxiety, fewer incidences of occasional vertigo, fewer days of bloating). Those symptoms, though, could also be explained by overeating, too many simple carbs/simple sugars. Especially given my negative blood work (and normal total IgA).

I'm sorry that I can't be offering more help here. I think that it's a good idea to go gluten-free anyway. Though, if it is the hives-trigger, does that mean not sharing butter with household eaters of gluten? Does that mean not sharing the toaster? Or, for this purpose, is it good enough simply not to consume gluten? I also think the connections between soy and the thyroid are strong enough to avoid soy as well. (I'm having a harder time with that one, as I already avoid dairy due to lactose intolerance).

Good luck! If you do try going gluten-free, I'm very curious in hearing how it works for you--I hope your hives go away for good!

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    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
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