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Member Since 29 Jul 2009
Offline Last Active Aug 31 2011 06:35 PM

Posts I've Made

In Topic: Reactivation Or Something Else?

27 July 2011 - 06:26 PM

Had the grill been used for anything with gluten? It is best for us to use foil under anything on a grill that is not dedicated gluten free. Another possibility- was there distilled vinegar in the salmon sauce? If so you could be one of the minority of celiacs who reacts to distilled gluten grains.

No, the grill is practically brand new, and nary a bun has touched it this summer! Also, my husband got this special tray for putting things like fish and scallops on. But, when I came home tonite, I pulled the bottle of sauce out of the fridge, and distilled vinegar was the second ingredient on the list.

I have a few questions for you!

1. This wasn't the first time we had used the sauce this summer. I've had it at least two or three times before, without feeling itchy or that rumbly tummy. but I am wondering. Last December, when I went on my little cookie binge, it took 3 nights of munching on my sister's cookies before ingesting gluten caused a noticeable reaction. Does it make sense to you that once I've gotten to the point where I have been mostly healed, that I appear to be more "tolerant", and it might take repeated exposures for me to noticeably feel ill effects? Supporting this idea is that I had the leftover salmon for lunch on Tuesday... and this morning had a couple of new itchy areas that definitely had nothing to do with bug bites!

2. Distilled gluten grains.... distilled vinegar... I thought vinegar was made from apples (white) or wine (red)? I ate salt and vingear flavored almonds over the weekend too....... Ok I can live without the sauce and the flavored stuff. Tell me, will red wine vinegar still be ok???

thanks ravenwood, I appreciate your help. Oh and guess what, even tho I'm way beyond the point where antibody or biopsy would have a hope in heck of being positive, I am having a DQ analysis done soon! should be interesting....

In Topic: How Many Have Dh, Really?

14 July 2011 - 01:44 PM

I think there could be significant numbers of people who have Dh that don't get diagnosed. Just as with any other medical issue, it would seem logical that there would be a degree of variability to the presentation of the rash. So a "classic" case might be easily recognized. But, someone else's rash, which does not quite fit that classic presentation, might not be.

I could be a case in point. Now granted, I do not have an "official" diagnosis. (my husband was laid off at the time.) My rash was my "turning nifty fifty" present. It started on one ankle, then the other. Not my elbows or knees!

Why do I think it was Dh? It was extremely itchy, so much so that I would wake up in the middle of the night, unconsciously scratching. And the spots were very red. Not all of them were always blistery - another thing that didn't fit perfectly.

So why do I think this was DH? I had the rash for 10 months and NOTHING helped it, it only got worse. It was when my daughter went on a gluten free diet - for completely different issues - that the light bulb went off in my head. After reading and researching, I went gluten free. Gradually the rash began to heal. More telling, a month into the diet, I "went off the wagon" and within 2 days had a fresh crop of itcy witchy blisters.

As my rash healed, I was left with reddish purply spots that took months to fade. Two years later, most of them are gone now.

Self diagnosing is risky, but i didn't have the dollars at the time to throw at it. From what I have read, the way my rash began may be less than a classic presentation. But, the time course and manner of recovery after going gluten free is more typical.

So yes, I think there is the potential for DH being more common, and less recognized, than some numbers indicate.

In Topic: Questions About Lag Time

02 January 2011 - 06:31 PM

As far as the time it takes to flare. When I was first diagnosed I would kow within a couple of hours if I had gotten gluten as a new lesion would appear. However after a year or so there was a lag time between getting glutened and the appearance of a DH lesion. While it used to be one of the first signs it is now the last. Now that the antibodies have left my skin it takes about a week for them to build up and for a lesion to appear. Even then the lesion is now usually just one tiny little blister that heals pretty quickly.

thanks for this post. Explains a lot of what I experienced lately, as I queried in another post. After previous "glutenings" exacerbation of the rash - my primary presenting symptom - was what I noticed first. 16 months out, this is no longer the case - to hear that new skin lesions are now one of your last signs corroborates both my recent experience, and affirms the rightness of my decision to adopt the gluten-free lifestyle (in the absence of a formal diagnosis.)

In Topic: Questioning My Conclusion

31 December 2010 - 09:54 AM

I would guess that your threshold is a bit higher than some. It takes a couple days of eating for your antibody response to build up to the point where you feel the symptoms.

I guess you could approach this two ways; you could think "oh, it'll be fine if I have a bit of gluten once in a while" or you can think "I'm lucky that I
m not as hyper-reactive as some people. I'll stay as gluten free as possible so I don't end up getting sick just walking down the bread aisle".

I do believe my threshold is higher. My daughter, for example, is more sensitive than I. Would it make sense, that the longer I've been adopting the gluten free diet (16 months now), that this threshold would be even higher than when I started, because those antibodies have been eliminated over time? That there would be an even longer lag time between ingestion and reaction? (time required for antibodies to build up?)

My perspective is more along the lines of staying gluten free as possible. It is just easier that way. After my birthday I began talking to some of my coworkers, who weren't aware of my "issues". (Never mind that I hadn't worn a skirt to work in over a year because of the rash on my legs!!) Family members in the local vicinity now "get it", even tho it may affect what's on the table at a holiday dinner...

My sister lives quite a distance away and our last Christmas together was before I started eliminating gluten. We've talked about it, as she was aware of my daughters problems. (Who had more issues than I did - mine were chiefly the rash). She was like, "oh one cookie won't hurt you..." Her visit was very short and I didn't want to make an issue.... This is something I am learning to deal with but I am not perfect at it yet.

Well, her cookies are gone, the only ones left are the gluten free ones I made. They're not quite as good as my sisters - its a work in progress!

In Topic: Questioning My Conclusion

31 December 2010 - 07:19 AM

thanks all. as far as continueing to eat gluten in order to pursue testing goes, I'm not really wild about that prospect. Yes it would be nice to have a diagnosis. But back in June, when the rash was reactivated after eating cake, I happened to have a physical. I talked to my physician about what I had experienced over the past year, and she told me she had several patients that were pursuing a gluten free diet for relief of one thing or another. Her main two points were, that I had been off gluten too long for there to be detectable antibodies present, but, if patients experienced a benefit, she supported their gluten free lifestyles.

It was the lack of reaction after two days of indulging (granted we're just talking about a few cookies) that made me question. Before, even tho it was delayed a day or two, such an indulgence resulted in "I can't stop scratching" itchiness, and at least a few more new red blisters.

I do count the crappy way I felt after lunch as some kind of reaction. I didn't feel that way after Thanksgiving or Christmas dinner, and I ate way more on those occasions. (just all gluten free.)

But I am kind of perplexed as to why nothing's happening in the skin. I felt a little itchy last night after walking the dogs, but, that could be attributed to winter dryness and wearing long underwear! and it didn't last, nor did I break out.

if anyone has some thoughts or similar experiences to share, I would really appreciated it. In the meantime, I need to go grocery shopping for our New Year's feast!

Do you suppose its because the antibodies have totally cleared from the skin layers?

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