WestyPDX
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Latest Celiac Disease News & Research:
Everything posted by WestyPDX
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Thanks for posting this. I've not been in an Olive Garden for years, and wasn't aware they had a gluten-free menu. As much as chain restaurants are maligned for factory food trucked in from central kitchens, OG opens up a whole new dining opportunity now, especially when traveling. The Steak Toscano and Mixed Grill dishes look great. They're 'normal' food...
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I recognize and agree that DH is a side effect of celiac disease, I'm living proof of that. But where are the numbers to support 20-25% of us having DH? This forum has 73 pages of posts. Doctors has 94 pages. Coping With has 724 pages of posts. I don't see the DH forum "heaving" with undiagnosed patients that would support a 20-25% experience rate, or...
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What percentage would you say is "many"? If you walk into any reputable dermatologist's office and they see watery, itchy blisters covering joint areas, they can dx DH by sight alone. If 20% or so of celiacs have DH, why isn't this forum heaving with "do I have DH?" or "what are these blisters?" questions? There are some, but not a lot given the site's size...
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My local GI doctor consulted with Dr. Green about my case a couple of times by phone. While I appreciated the effort both of them made, I think my doctor benefited more as a doctor than I benefited as the patient. I still got the same standard lines and had to badger my GI doc into doing some of the most basic tests even after his consultations with Dr. Green...
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I think the 1% number is closer to reality. Data points: My primary care physician has ~2,000 patients across all ages. If the numbers are right, he should have about 20 celiacs currently. When we last discussed DH, he said I was his only patient with it in his 25 years of practice. My GI doc said she sees so few cases that it's an automatic dermatology...
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ARCHIVED Did You Get A Negative Biopsy?
WestyPDX replied to Newsy's topic in Dermatitis Herpetiformis
Yes, but the pain is over fairly quickly. It's about twice as painful as a standard blood draw, but lasts a bit longer. It's been a long time since I had mine, so I forget if they give you a shot of local anesthetic or just rub a numbing cream over the biopsy area first. They do a punch biopsy using a bladed instrument to cut through the epidermis... -
ARCHIVED How To Get Relief From Itching?
WestyPDX replied to Di2011's topic in Dermatitis Herpetiformis
A medication called Dapsone will do it. I can't imagine why your doctor didn't prescribe it while giving you your diagnosis. My experience was that itching stopped within 24 hours and blisters healed within a week. -
I'd been on hydrocortone (an oral cortisone) for a couple of years, as one of the things my doctor found while searching for answers to a bad reaction to thyroid meds was that I had low adrenals, too. When I literally OD'd on thyroid, a psychiatrist ordered me off all of my meds cold turkey in order to stabilize, since he thought that combined they were all...
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ARCHIVED Lack Of B12 Responsible For Low Energy?
WestyPDX replied to speedy2056's topic in Coping with Celiac Disease
Interesting links. Something to think about before you go for B-12 shots: When I had an untypical bad reaction to thyroid medication some years ago, my doctor ran a battery of tests. After finding my B-12 levels were "dangerously" low (I think the reading was 90), I started going in for weekly, then monthly B-12 shots. But the shots barely moved the test... -
ARCHIVED How Do You Deal With Stress?
WestyPDX replied to WinterSong's topic in Coping with Celiac Disease
If your issues with stress, anxiety and OCD weren't caused by gluten in your diet, a gluten-free diet isn't going to cure them, of course. Four months is probably long enough to see if they were or not. You've said that the stress on your body of going gluten-free has only added to your other existing problems, and I believe you. An article I read on this... -
ARCHIVED 5 Months Gluten-Free And Still Tired, Inspire Me To Stick With It Please!
WestyPDX replied to Twizzel's topic in Coping with Celiac Disease
I've got a left field recommendation for you that's helped me with energy issues, and I only mention it because you're male. If you're absolutely certain that you've not been absorbing nutrients fully, you may be anemic. As in iron-poor blood. Docs don't usually think about it for males, because we don't lose iron like females do once a month, to be frank... -
Heh. Got it, that'll be easy to remember. Bean flour is icky. It's too bad that I'll be ditching dairy as well after the last of the milk is gone, otherwise I'd go out for some Rice Chex. Those I like. Too bad I didn't know they were gluten-free when I was looking for something else I could eat for breakfast. (And I don't know why someone can't just...
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Hi, and yup, I live about 4 miles from Bob's HQ in the Portland 'burbs, LOL, so easy access. I remember them when they were literally a hole in the wall. After my experience at the gluten-free bakery on Corbett on Day 3 of the diet (spitting out the apple cake after a bite or two, and ditching the bag of AP flour substitute after one use), I just don't think...
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I love Alton! Even have his first cookbook. I've always liked to cook, but when I'm in a state of distress, the last thing I want to do is get up and be creative in the kitchen, so it's nachos. Or chili over rice. Over and over. Excellent point about absorption of meds, and I think I have that covered with my primary doc. He's agreed to let me come...
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Fair question, but nope, I don't really drink that much at all, perhaps one or two drinks or a glass of wine a month. But put a Campari with grapefruit juice in front of me and I'll take two! The only other things that have been a problem have been Synthroid and SSRIs. I had a terrible time with thyroid from the first hour I took a tablet, and my TSH...
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What a remarkable night I just had. Ever since the third or fourth night of being on the GFD, I was having night sweats. Every single night without fail. They had been bad enough that I had to change pillows and night clothes, then move to the other side of the bed, since I'd wake up in the middle of the night lying there in a pool of sweat. Last night, nothing...
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That's a funny thing about this, I've not once mourned the loss of being able to eat anything specific. I don't crave pizza, or wish I could have my favorite bagel again every morning, etc. This is something completely different, a withdrawal from gluten in general, that's like withdrawing from heroin. I was feeling worse every day, not better. There's got...
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Thanks, I will do that! I've just gotten off the phone with the dietician I've been trying to track down for the past few weeks, and she asked for something similar. What I'll probably do is share what I jot down in her pre-appointment questionnaire, and go from there. Was interesting, when I told the dietician that I'd dropped the diet and why, but I...
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Well of all things, I just got a call from Nicole. Apparently she'd been away for the holidays, and no one from her office had e-mailed her saying that I was trying to get a hold of her, hadn't checked the other line since people rarely leave her voicemail, so she had no idea I was trying to reach her. I can excuse that, stuff happens, it was the holidays...
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I might be, that's why I went looking last night for people who are worse off on the GFD, which lead me to this forum. The article I read about gluten withdrawals being as hard as opiate withdrawals really hit home with me. No doctor will take a patient off an opiate cold turkey--that would be considered malpractice, but they do it with gluten all the time...
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Thanks! And yep, being as gluten-free as possible is my intention while I get this sorted out. I've already sourced wheat-free tamari, for example, so I don't intend to go out tomorrow to buy a bottle of regular soy sauce just for the next 3 weeks. But I won't be afraid if I go for some Pad Thai at lunch and what they made before in the wok might have had...
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Yep, been diagnosed three times, once in 1997, once in 2002, and recently again in November 2008. The first two times my GI doc said the damage was mild, and it was even difficult for her to find a place to biopsy the second time around. When I was worse off on the GFD both times, it didn't make any difference to her if I did the GFD or not, so I dropped...
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Boy, I really need to get this off my chest, it's a big step, but I've gone and done it, I found enough things between the fridge and the last bag of gluten foods I hadn't gotten rid of yet to make the plate of chicken chow mein I'm wolfing down now as I type. After spending the whole six weeks while on the GFD in physical and mental distress, plus most of...
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Thanks for your support on this issue! I realize that asking too many questions before I even walk in the door could label me as a difficult patient, but on the other hand, if a practitioner can answer a few basic questions ahead of time, that indicates to me that they're organized, know their topic, and can present themselves well. The other thing that...
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I've been told recently that they can't, but they can see abnormalities which might be a lymphoma, then investigate further. In my case, the radiologist saw a few things that didn't look quite normal in an abdominal CT scan, so my doctor consulted with Dr. Green in the Celiac Center at Columbia on how to proceed. What I was told was that they could use the...
