
durhamgrrl
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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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All good suggestions! Thank you
Since I'm new at this, I made my post, and then it took me 5 days to find it again!
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That has totally happened to me, too! I sell advertising and went to a bakery last December to talk with them and the flour dust was thick in the air. I was sick for weeks after just breathing in there!
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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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What's up with Bard's Tale Ale? I've been waiting for months to try some! I ordered a case of the Ramapo Valley and it was so sweet that I just couldn't drink it. I even had a hard time giving it away! :-)
I want some Bard's Tale!
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I don't know about anybody else, but I get "pink eye" in my right eye when I've eaten soy. It also makes my lips swell a little bit and I get this weird rash on the corners of my lips and on the bottom. It looks kinda like clown makeup! Only it's never on the top.
But the pink eye thing for me is never the viral kind. I spent an entire summer two years ago on steroids and avoiding everyone I knew b/c I thought it was pink eye, but it's an allergy for me. It's very itchy and achy and watery and I even get a bump like a stye sometimes. Ugh!
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I travel a lot and know of some restaurants that are gluten-free, but is there any way to find out what all of them are? I know PF Changs and Outback Steakhouse have gluten-free menus. I just looked at Taco Bell's website, however, and saw that they don't have one single item on their menu that is gluten-free. Travelling is becoming so difficult! I have a ton of food allergies- gluten, dairy, soy & seafood, but the others are easier to avoid (and the consequences aren't nearly as bad!) than gluten. Any suggestions?
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I hear ya! I can't eat gluten, dairy, soy or potatoes! The frustrating part about the potatoes is that potato starch seems to be in every gluten free product on the market today! It is so hard to find things to eat...I'm with ya. Mainly, I just wish it were easier to find something to eat! My local natural foods supermarket has an enormous gluten-free section and I can't eat any of it.
I wish health insurance would pay for a personal chef! :-)
What Is Wrong With Me?
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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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.