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    Do you have questions about celiac disease or the gluten-free diet?

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Hi. I'm fairly new to this forum and have tons of questions. I stopped eating gluten about a year ago because just getting off wheat didn't seem to stop all my symptoms. I have loose stools several times a day, often with blood. I had surgery last year for Hems, but they keep coming back. I also get gas when I've had gluten, and I have a histamine reaction that will last for weeks with things that generally only bother me a little, making me sneeze a lot. I also have tons of food allergies or intolerances that I only know from elimination. When I drink tea or coffee, my throat becomes constricted and I have difficulty breathing, so I stopped that about 4 years ago. I stopped eating wheat because even after a tonsillectomy 5 years ago, I was still getting blisters on my throat and was just sick and exhausted all the time. I was tested repeatedly for Epstein Barr but always tested negaive. Now, if I eat even a little wheat, I will have a sneeze attack that lasts for 6-8 weeks with runny, itchy eyes. I can take benadryl and it helps sometimes for the time being, but not for long. Also, I get the GI problems. If I eat potatoes I get hems. If I eat seafood I get a rash on my arms and if I eat dairy, I just feel fluish for several days and my eyes swell and get milky. Also, I had a giant muscle spasm in my shoulder blade that caused Thoracic Outlet Syndrome. My right hand would turn purple and go cold and it was the most painful thing I have ever experienced. I spent 2 years at the local Pain Clinic doing PT, yoga and taking all kinds of nerve blockers to make it stop. It seems that only when I stopped eating all these foods, did it go away. And most recently, soy makes my lips swell and I get a rash around my lips and eczema that lasts for about 10 days. It also gives me something similar to pink eye in my right eye. There's a few more foods that bother me, like bell peppers and oranges but if I rotate, I'm generally ok. All starches, however, seem to wear me out. I also have seasonal allergies. And, I have a strange condition called Frozen Shoulder now in my left shoulder that seemed to come out of nowhere. OH! And I had skin cancer (melanoma) on my hip in the fall. I'm only 37 years old and this was up where my bathing suit line would be. Maybe I've been burned there before, but generally, it's a place where the sun doesn't usually shine.

I was tested for Celiac but it was negative. Friends have told me that since I haven't eaten gluten for a year, it wouldn't show up. But I have so many weird symptoms and intolerances that I don't know what is wrong with me. Most people with Celiac talk about how hard it was for them to gain weight, but I can't seem to lose weight no matter how I eat or exercise. I see a gastroentologist tomorrow but have no faith that they'll know what's wrong with me. I've been seeing all kinds of natural healers for several years now, since they are the ones who led me onto the "food allergy" path in the first place, but I don't seem to be getting anywhere.

Does anyone have any suggestions? Does this sound like celiac disease? I'm so tired and am exhausted from constantly trying to figure out what is wrong with me. I'd really like a label, so at least then I'd know how to focus. As it is, I feel absolutely crazy.

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I am so sorry that you are having such a hard time. It sounds like there are maybe a few different foods that you maybe truly be allergic to or have an intolerence to. Have you had any testing done for various food allergies?

You don't have to answer this but are you from Durham, NC? Just curious cause if so, we would be neighbors.

Good luck to you.

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Yes, Durham NC.

No, I haven't been tested by an allergy specialist b/c by the time I went to seek alternative treatment, I'd given up on Duke Med Center. I've had so many problems there and basically have "run away" from them as fast as I could! Not only did I see tons of doctors who never diagnosed me correctly, but the surgery I had over there was a nightmare. In fact, so many things went wrong over there that they didn't make me pay for my hospital stay. I'm only seeing the gastro doc b/c my dermatologist and a colleague recommended it since I'd had skin cancer. I even ventured over to Duke in the spring last year to have my bad looking mole looked at by my primary and they said it was fine. I think my file over there must say "HYPOCONDRIAC, ignore her!". But I knew it was a funky looking mole so I went to a dermatologist here in town (not at Duke) who said it was clearly a melanoma. He of course biopsied it and then took a big chunk of my hip out when it came by positive. I did see an allergy specialist about 9 years ago and got pricked for lots of things, but wasn't tested for food allergies. They recommended shots, and I did have a few, but then I chickened out b/c my Mom was having allergy shots when I was a kid and went into anaphylactic shock and almost died. I did go to Lakewood a few months ago to get a new primary and that's where I had the celiac test. I guess I should go again to an allergy specialist but I have totally lost faith in the medical profession.

Thanks for the kind words, neighbor. I could sure use them today :-)

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Guest katzmeow21
Hi. I'm fairly new to this forum and have tons of questions. I stopped eating gluten about a year ago because just getting off wheat didn't seem to stop all my symptoms. I have loose stools several times a day, often with blood. I had surgery last year for Hems, but they keep coming back. I also get gas when I've had gluten, and I have a histamine reaction that will last for weeks with things that generally only bother me a little, making me sneeze a lot. I also have tons of food allergies or intolerances that I only know from elimination. When I drink tea or coffee, my throat becomes constricted and I have difficulty breathing, so I stopped that about 4 years ago. I stopped eating wheat because even after a tonsillectomy 5 years ago, I was still getting blisters on my throat and was just sick and exhausted all the time. I was tested repeatedly for Epstein Barr but always tested negaive. Now, if I eat even a little wheat, I will have a sneeze attack that lasts for 6-8 weeks with runny, itchy eyes. I can take benadryl and it helps sometimes for the time being, but not for long. Also, I get the GI problems. If I eat potatoes I get hems. If I eat seafood I get a rash on my arms and if I eat dairy, I just feel fluish for several days and my eyes swell and get milky. Also, I had a giant muscle spasm in my shoulder blade that caused Thoracic Outlet Syndrome. My right hand would turn purple and go cold and it was the most painful thing I have ever experienced. I spent 2 years at the local Pain Clinic doing PT, yoga and taking all kinds of nerve blockers to make it stop. It seems that only when I stopped eating all these foods, did it go away. And most recently, soy makes my lips swell and I get a rash around my lips and eczema that lasts for about 10 days. It also gives me something similar to pink eye in my right eye. There's a few more foods that bother me, like bell peppers and oranges but if I rotate, I'm generally ok. All starches, however, seem to wear me out. I also have seasonal allergies. And, I have a strange condition called Frozen Shoulder now in my left shoulder that seemed to come out of nowhere. OH! And I had skin cancer (melanoma) on my hip in the fall. I'm only 37 years old and this was up where my bathing suit line would be. Maybe I've been burned there before, but generally, it's a place where the sun doesn't usually shine.

I was tested for Celiac but it was negative. Friends have told me that since I haven't eaten gluten for a year, it wouldn't show up. But I have so many weird symptoms and intolerances that I don't know what is wrong with me. Most people with Celiac talk about how hard it was for them to gain weight, but I can't seem to lose weight no matter how I eat or exercise. I see a gastroentologist tomorrow but have no faith that they'll know what's wrong with me. I've been seeing all kinds of natural healers for several years now, since they are the ones who led me onto the "food allergy" path in the first place, but I don't seem to be getting anywhere.

Does anyone have any suggestions? Does this sound like celiac disease? I'm so tired and am exhausted from constantly trying to figure out what is wrong with me. I'd really like a label, so at least then I'd know how to focus. As it is, I feel absolutely crazy.

Sorry to hear you have had so many problems.

Have you been tested for leaky gut? (Intestinal permeability) If you have that, which most people with that many allergies do, then I would suggest L-glutamine to heal the gut lining. Hydrochloric acid which will help you to break down the food much better and will reduce the allergy response. You might have to take really high amounts of the HCL. Ask a GOOD naturopath about it. Until the gut heals you will suffer from allergies of all kinds.

Serious rotation diet and elimination of the worst offenders and lots of gut healing herbs.

good luck

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durhamgrrl,

I totally feel the same way about the Hypochondriac label. There have been so many weird things going on with me that no one can seem to figure out as well. I have been going to UNC for most of my GI stuff. I feel like I have been poked and prodded and radioactive from all of the tests and procedures I've had but still they don't know an exact rhyme or reason besides the Celiac Disease. I have made some great strides with the Gluten-free diet and have been gluten-free for almost 6 months now. I have had problems with my Thyroid as well and the Dr. has just increased my meds again. Maybe I will start to get a little energy back with that I hope! Keep us posted on what you find out at your GI appointment. I go back to see my GI next week. Hopefully he will have good news for me. Good luck to you again!!

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Good luck to you, too, Sis!

And yes, to katzmeow21... I've been being treated for Leaky Gut for over a year now at my naturopath. I take these pills called "Leaky Gut" before every meal. I've also taken L-Glutamine, and lots of other natural type pills. In fact, I take 87 pills a day from my naturopath. If that won't make you feel nuts, I don't know what else will! :-)

I also just made an appt with an allergy specialist for next week. I went to the ortho doc at Duke today and was given 2 shots of hydrocortisone for my frozen shoulder, but they are baffled as to why I would have such a reaction to a relatively minor injury without having diabetes. Frozen shoulder is an auto-immune reaction to an injury. Still guessing...

Thanks for all of your input!

Oops...I meant cortisone shot. I'm losing it!

And feeling kinda nauseous.

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