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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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      @Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.
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      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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