itchy
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Latest Celiac Disease News & Research:
Everything posted by itchy
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ARCHIVED How Long Does It Take For Dh To Go Away After Glutening?
itchy replied to LOWNskater52's topic in Dermatitis Herpetiformis
Several of us have experienced new rashes appearing even as old ones were disappearing. My DH has lasted three years, and is only now at the point of (hopefully) disappearing. The disappearing rash is in an area that wasn't affected for the first two years, and the severe rash of the initial 'attack' is now reduced to two tiny lesions, one on each... -
ARCHIVED Is Canned Fruit With Juice A Risk?
itchy posted a topic in Gluten-Free Foods, Products, Shopping & Medications
My apologies if this topic has been covered. I scanned the recent threads and didn't see it discussed. After dealing with persistent Dermatitis Herpetiformis that has lasted three years despite a very strict diet, I became suspicious of one element of my diet, economy 'canned fruit with juice', which I was eating quite a bit of. Coincidentally or not... -
ARCHIVED Doctor Visit Today - Totally Mortified (:
itchy replied to JaneWhoLovesRain's topic in Dermatitis Herpetiformis
Join the crowd of those who have been told we have scabies. Very embarrassing. In hindsight, I think we all could have demanded that the physicans prove it by taking samples. Scabies is caused by tiny mites that can be seen under a microscope. Once you've done the scabies treatment without any response, you will have more evidence that you actually... -
Many of us have had the experience of having new DH areas appear while we were gluten free.
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Personally I try to eat whole foods as much as possible. I trust labelled manufactured food, but avoid if it is costly. I am very skeptical about restaurant meals that are labelled gluten free, unless I have a high level of trust that the staff really knows what they are talking about. Similarly I am skeptical about the assurances of hosts at parties, etc...
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ARCHIVED Dh From Another Intolerance?
itchy replied to eeyorelvr's topic in Dermatitis Herpetiformis
It is indeed distressing to think it might be around for ten years. Though it is better than many other afflictions one could have. Some people suggest that the increase in coeliac is because our immune systems no longer has to cope with parasites. If I was convinced that was true, I might consider getting myself a little tapeworm pet. :-) -
Well if you had a positive blood test for coeliac six years ago, and you have DH almost certainly now, and if you respond to a gluten free diet, you ARE coeliac and don't let anyone tell you any different. Many of the people who develop DH don't have as severe gastrointestinal symptoms as other people with coeliac. That doesn't mean we aren't coeliac...
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ARCHIVED I Don't Know What It Is!
itchy replied to GlutenFreeAustinite's topic in Dermatitis Herpetiformis
To me it doesn't have many of the characteristics of DH. Typically DH would itch or sting ferociously. More likely it would come on both sides of your body, and you might notice some linearity. I haven't heard of a single large sore related to DH, but who knows. Often DH sores would have a hard centre, and the sore itself would be surrounded by an area... -
Hi Tamesis, If you scan through some of the recent threads here, you will see that several people have had experiences/symptoms just like yours. There is widespread ignorance about coeliac issues and DH among the medical community, apparently across at least three continents. If you are mostly gluten free testing won't help, you normally need...
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ARCHIVED Dh From Another Intolerance?
itchy replied to eeyorelvr's topic in Dermatitis Herpetiformis
What I find curious is that all my healed lesions no longer react. Only the ones that never quite healed. And these behave just like other DH lesions, except that they have never quite healed. They flare and heal in a way that appears completely unrelated to other environmental factors. One time they seem to react to a stressful day. The next they do... -
I think it will vary. My gastrointestinal symptoms were 95% better literally within 3 or 4 days. My DH symptoms stopped getting worse and were detectably better in a couple of weeks. The DH symptoms have taken almost three years to go away however. Experience varies widely between people, but I think that you will likely find enough relief that you...
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ARCHIVED Dh From Another Intolerance?
itchy replied to eeyorelvr's topic in Dermatitis Herpetiformis
I second squirmingitch. My DH is now pretty much restricted to my scalp, and seems on the verge of being gone, but every few days it flares again. I've been eating a very controlled diet, because I want the rash gone and right now I don't have any social pressure to eat out, etc. I am very sure that I'm not getting accidentally glutened. Or iodined. Or... -
lilly, the knot in your stomach that you describe is very much like what I experienced many years ago. I had it for a couple of years, then gradually progressed through a variety of symptoms that I now know were coeliac symptoms. Eventually I got DH. By all means get some more testing, but if nothing turns up, you might find relief from a very strict...
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ARCHIVED I'm Sure This Is Celiac, Why Doesn't My Doctor Agree?!
itchy replied to Honey015's topic in Dermatitis Herpetiformis
I'm in the UK as well. There are some advantages to having an actual diagnosis in the UK because you can get certain gluten free food on prescription, on the NHS. Because I'm not a resident, I don't qualify, but you might. Regarding Chinese food mentioned earlier, there are many avenues for gluten to be found in Chinese food, wheat noodles, sauces... -
ARCHIVED I'm Sure This Is Celiac, Why Doesn't My Doctor Agree?!
itchy replied to Honey015's topic in Dermatitis Herpetiformis
Regarding anemia. I had a similar experience. The first doctor I approached said that he could tell I wasn't coeliac just by looking at me. Presumably this was because I wasn't anemic. (At that point I hadn't developed DH). But many with DH don't get as bad gastrointestinal problems as others, and won't develop anemia to the same extent. -
ARCHIVED I'm Sure This Is Celiac, Why Doesn't My Doctor Agree?!
itchy replied to Honey015's topic in Dermatitis Herpetiformis
It sounds very much like you have both gastrointestinal coeliac symptoms AND dermatitis herpetiformis. A large number of us don't have 'concrete' diagnoses, because of false negatives in testing. A large number of us have experiences similar to yours with respect to 'uninformed' physicians. (and a few idiots) It would seem that you got relief from... -
I'm not sure if I've seen an explanation of why some people get coeliac and some get DH. But remember that in the development of the embroyo the gut is a 'folded in' part of the same tissue that the skin is formed of. So the gut and the skin have some things in common. I suspect that is part of the explanation. It goes right back to the early part of...
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Quite a large percentage of us have no formal diagnosis. I went to a GP with my rash and by the time I had an appointment with a consultant I was convinced by photos on the internet, etc., that I had DH. I immediately went gluten free and in a few days my GI symptoms were gone, and the DH improving. The consultant agreed with me, but by that time there...
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My DH showed up at age 58. But I had mild symptoms of coeliac from about 47, which were undiagnosed. I agree with ravenwoodglass. I would add that if the test comes back negative, that doesn't mean you don't have DH, because the test has a high rate of false negatives. The test will not work unless you are eating your normal, gluten containing...
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I don't have an opinion about whether your skin condition is DH, or not. But there are a lot of skin conditions that seem to clear up with a gluten free diet. But with those bowel symptoms one would certainly think that you might be coeliac. Going strictly gluten free for a while might give you a clear indication of whether you are coeliac. Eating...
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Not everyone is affected by iodine, or topical contact with gluten. It's worth experimenting to find out whether your boyfriend is affected in this way. But if he is not affected by these, there is no point in limiting his lifestyle by avoiding them. Severely restricting iodine intake can be dangerous. Some hints from my experience, somewhat repetitive...
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ARCHIVED Other Food Sensitivities
itchy replied to Jaxonthehuman's topic in Dermatitis Herpetiformis
Jaxon, this probably sounds patronising, because you've been dealing with this for so long. It's not intended to be. But given that your disease sounds like DH, it should be responding to a gluten free diet by now. I don't know if other conditions cause the bleeding and itching, but DH is certainly a very likely cause. Given that, are you sure you... -
Diandliam, I can't detect any other issue for except ingested gluten. As I've said before, iodine consumption doesn't seem to make any difference for me. Gluten on my skin or in the air has little or no influence on me. I've never detected any other skin allergy or effect from other substances. I am however extremely sensitive to ingested gluten....
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I don't believe that the genes associated with coeliac are harmful mutations. Rather they are common, natural genes that are helpful or benign in other circumstances. I think it is likely that at some point we will discover what triggers coeliac, and at that point simple lifestyle changes will protect all future generations from the 'disease'.
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I think one could argue it's not a genetic 'disorder'. Quite possibly the genes that cause it were once very helpful and helped us to survive. Something has changed in our environment in the past few decades which has caused the genes to be expressed as a disorder. Coeliac is several times more common than 100 years ago, based on blood analysis. ...
