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This very well could be a topic that should be posted elsewhere, but my "presenting symptom" almost three years ago was an itchy rash, so that's why its here.
I know its not good to self diagnose, but at the same time I was dealing with the rash, I was helping my daughter through her problems. Long story I've told previously, won't repeat. But whenever I suggested to one of her physicians that gluten might be a contributing factor, I was either patronized or looked like I was one of those looney parents. When it finally entered my thought processes that my itchy itchy rash was possibly gluten related, I was not confident of an open perspective from my own physician (I had recently changed drs), did not want to deal with a negative response, nor did I want to incur any more expenses. That summer was a bad time for my family on several fronts. So I just went gluten free. (along with my daughter).
That was a little over two years ago, and my rash healed slowly over time; still have a couple of light purple spots but those are fading.
Every once in a while, I experience some regret that I never pursued testing. Even though I had begun to experience at the time of the rash, other things that you can string together like so many pearls (feeling occasional tingling in my hands, bone scan indicated slight osteopaenia, had been hypothyroid for several years.) And the fact that the tingling went away completely and the rash began to improve after only a few weeks on the diet. I look at these things and say, what more proof do I need?
Lately I have been feeling regretful/doubtful again, and this morning I had to go to the dentist. I hate going to the dentist. Its no fun for me, its like a torture chamber. My gums have been borderline for many years, some areas of recession, and they tend to bleed easily during cleanings. As they scrape away the tartar I get the lecture about not flossing enough...
Today was very different. No bleeding. No massive scraping session. It was the easiest cleaning I have had since....since I can remember. The hygienest said my gums looked much better, had I been flossing more regularly?
I nodded dumbly yes, but the truth is, I haven't! In fact the past few months, probably less! go figure.
I think, somewhere, I have read about a link between peridontal problems and gluten/celiac. Is this wishful thinking, or could it be another pearl/piece of evidence, supporting my self diagnosis?
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....
I've been on this forum for almost exactly two years. My daughter has been gluten free for 2 years; my 2nd year aniversary is Aug. 10.
I went gluten free to see if it would help with a perisistent, itchy rash of 10 months duration on my legs. It was so bad I couldn't wear shorts the summer of 09, and if I had to wear a dress, had to wear black pantyhose. Did that for two summer weddings - no fun!
But with time on the gluten free diet, the rash began to disappear. Early on, accidental or not so accidental gluten exposures quickly produced a reactivation in the form of new itchy blisters. As time went on, the time lapse between exposure lengthened, and the extent of reactivation of the rash decreased. So it seemed I was becoming more "tolerant". My last purposeful fall off the wagon was last Christmas time. If you remember me posting about that, I want to thank you all for your advice because it helped!
Last summer, 2010, I still had the rash tho it was much reduced and by the end of summer was pretty much gone. By this spring, even most of the purple spots had faded, so I have been comfortable and happy wearing shorts!!! good thing because has it been HOT!
Something weird happened this past weekend. Being beastly hot, Thursday and Friday I took the dogs to the beach in the evening. Only problem, was the horseflies were out and I got bit several times. Then in the garden over the weekend, there were the mosquitoes. More bites. (Two years not wearing shorts, I didn't think about spraying myself!)
The bites started to bother me on Sunday, enough to go buy a new tube of Gold Bond cream. This morning, (Monday) I was really surprised to see how bright red some of the bite spots looked, as well as a spot that was obviously a scratching place.
These areas weren't like the old rash, other than that bright red color! And today I have had the most horrible stomach. Rumbly and gassy. (Mind you, GI symptoms were not what prompted me to go gluten-free two years ago, they were minimal to none.) I didn't feel like eating anything at all until early evening, and some cheese and nuts sufficed.
I am comfortable now and the red areas are less angry but I am wondering a) was I glutened, and did that exacerbate the normal itchiness of bug bites? was my rumbly stomache a coincindence?
Ok over the weekend meat,veggies, fruit, cheese...good whole foods. Only questionable items were Lays potato ships, Klondike bars (original) and a grill sauce used on salmon. only questionable ingredient in that was soybean oil.
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.
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.)
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!
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?
It's been a long time since I've posted... because both my daughter and I have been doing well. Won't retell our stories....the recap is that alhtough neither of us have a formal diagnosis, the gluten-free diet helped my daughter in many ways, and going gluten-free helped me get rid of a rash with many of the hallmarks of DH.
I had been experiencing a red itchy rash, and when I went gluten-free 8/10/09, the rash began to slowly heal.
Sometimes when you don't have a formal diagnosis, you question yourself.
About a month after going gluten-free, I let myself have pasta at a family gathering, and 48 to 72 hours later, the rash worsened again, giving me incentive to stay away from wheat. I was sucessful at learning and didn't have another temptation til June 2010 - when coworkers surprised me with a cake. (Yes I ate some.)
I went home, waiting for things to start to itch. By this time one leg was completely healed (still had purply scars) and other leg was about 2/3 healed. Nothing happened...so .... two days later I ate more cake. about 48 hours after that, I had more itchiness and a few new spots. so once again, I was back on the wagon.
6 months down the road, the rash is completely gone (still have a few fading purple spots) After having successfully navigated thru Thanksgiving and Christmas, I was tempted by my sisters gingerbread cookies (they are totally awesome.) I ate two this past Tuesday...nothing happened. I ate two more last night... nothing happened.
so after dosing myself and nothing happening, this morning I began thinking
"mayben I'm not intolerant after all." Lunch time came... and I went for a wrap. (First one in over a year.)
About an hour and a half later I felt tremendously lethargic. (I haven't felt that way after eating in a long time!) And and hour after that, I had the dry heaves.
questions to all of you: if you were in my shoes, what would you be thinking about your selfdiagnosis of being gluten intolerant?
18 years ago my mother in law had most of her stomache removed due to cancer. Immediately, this changed her life style, and, to some extent the nature of our family gatherings.
First was the need to eat at planned times. She couldn't wait for a "fashionably late" dinner. Second, there were foods she could no longer digest. So, we had to ensure that the menu at family gatherings offered something she could eat and enjoy.
This was a big change for the whole family.
I don't ever remember feeling resentment, but I do remember feeling, to my shame, and for better or for worse, "hassle". Because we did have to change the way we planned and organized holiday meals.
To be fair, she always brought something to eat, either for the purpose of unforseen delays in bringing the meal to table, or, to substitute for a side dish or desert. She did take responsibility for meeting her own needs without asking us to totally alter (other than the timing of meals) our holiday gatherings. And over time, all these things became normal.
In the last 10 months, her response to our (my daughter and me) adopting a gluten-free lifestyle has been wonderful. She buys gluten-free free products and breadcrumbs, tries to adapt some of her recipes so we all can enjoy them when she cooks for us.
In hind sight, there were times that I was not as understanding to my MIL as I should have been ... I am lucky she has been so willing to try to understand Gluten Free cooking.
oh yeah, she already did check Vit D! And my thyroid function. Both were low. and there was a parameter on my CBC that was a possible indication of Vitamin B deficiency. (I work in a lab, will explain that one on request)
So, she prescribed Vit D, thryoid replacement hormone, a biphosphonate drug (for the osteopaenia.) I had already been taking supplemental calcium and have now added B vitamins to my routine...
I am normally anti-pill, but I figure I have only been trying to be gluten-free for 10+ months, out of my 52 years... the effects of gluten in my diet over all those years is probably a gradual, cumulative one and will not be changed overnight. And, to be honest, some of this is also simply age related! (Can't get around that one completely.) The supplementation hopefully will be beneficial.
for the most part, I will "ditto" conniebky's reply...
but I will also add that I do understand that it can be somewhat frustrating not to have an "official" diagnosis.
Initially I didn't need the validation of an official diagnosis. First it was all about making my daughter better; the benefits I obtained from being on the same diet were observable and since gluten intolerance tends to be genetic, it made sense that if she was gluten intolerant, she got it from somewhere! The most noticeable benefit for me, was a rash that had plagued me for months finally started to heal.
I was faithful for about 10 months, and then found myself in a social situation where it was really hard to refuse (a birthday cake - a surprise, made for me!) I didn't have an official diagnosis, and since I hadn't worn a skirt in about 3 years noone had seen the rash on my legs... how to explain all of this, and not come off as a health nut kook AND not offend (all within 3 seconds)...
I ate the cake.
And suffered the consequences; my rash erupted and I figure I have backtracked in that area about 4 months....
Fortunately I saw my doctor recently and she looked at the rash. I told her my opinion that it was gluten related, that it had been improving but that I had eaten cake on my birthday. She listened. And she basically said, that we don't really need a diagnosis, if the gluten free diet helps this condition (as well as other things gluten intolerance may affect), she supports the gluten-free lifestyle.
How refreshing! Although I really shouldn't have needed her validation, it does help. Next year I am going to feel lots more comfortable explaining to my friends and coworkers, that if they want to surprise me with goodies, they need to be gluten free.
hi all, have not visited this forum in a while, mostly because life has been too chaotic. I have been working two jobs, while hubby got his feet on the ground after being laid off. This craziness, fortunately, will be ending soon, but safe to say, I have not had much time for social networking!!!
My daughter is doing great on the gluten free path, independently managing her own choices. She will be starting college in the fall... at a school where the kitchen emphasizes healthy options, and has a frig dedicated to gluten free items, and a staff willing to cook to order any entree, gluten free.
As for me, I confess I had an experience falling off the wagon....my rash had been progressively healing since last fall, and tho not all gone was much better. I still had a few leftover spots. The beginning of this past month was my birthday, and I was given a surprise party at work. I haven't discussed dietary affairs with many of my coworkers - the need has not come up that many times - and so the cake definitely was not gluten free. It was a chocoloate lover's dream however. I confess, I ate one whole piece.
Next morning I awoke, fully expecting intense itching. Didn't happen. Over the next few days, a few of the spots were very mildly exacerbated...maybe.
So I began to question the relationship between gluten and my rash.
End of the following week... another birthday celebration at work. By now I was very much at the "what the hell" point, and so, I indulged again. Over the next few days from that, itching was very much more pronounced, and the cherry red spots returned. I am almost two weeks out from the last indiscretion, and although things are starting to subside, I definitely took many steps backwards...
Silver lining to the cloud. Since going gluten free last August, I had not had a checkup with my primary care provider. (Going gluten-free was a decision I made on my own.)
So in the last couple of weeks I had that appointment, just about at the point my rash was really reactivating. So, I talked to my PCP, sharing with her why my daughter and I had gone gluten-free, what are observations were, and more pertinently, my recent rash reactivation post birthday celebrations.
she looked at the rash very carefully and then basically indicated that she believed me. Here's what she said.
First, that it was pointless to do testing since I had been (recent temptations not withstanding) gluten free for several months. Second, if I personally felt improved health from the gluten-free diet, then it was worth continueing on it. Thirdly, that my observations of what happens when I deviate from the diet (ie exacerbated rash) do constitute valid evidence; she supported a gluten free approach without question.
Oh yeah, and then there was this other piece that fits in with the gluten intolerant picture - I have a new diagnosis - osteopaenia.
So, she prescribed Vit D and Phosphomax (may have the spelling wrong) I am now taking Vit B supplementation, as well as additional Calcium. I have a recheck in August.
Not happy about the angry red spots on my legs, but am happy about my PCP's attitude towards gluten intolerance!
hey guys, sorry my reply has been a bit delayed, but following is my cracker recipe. Can't claim it as my own, was given to me by someone who helped me get started on this gluten free journey. I will give the the recipe they gave me originally, how I have used it, and other possibilities..
Brown Rice Flour Crackers.
2 cups brown rice flour
1/2 tsp salt
1/2 Tbsp brown sugar
2 tsp basil
1 tsp marjoram
1/2 stick melted butter (unsalted)
7/8 cup water (between 3/4 cup and 1 cup)
Mix all dry ingredients together. Add metled butter, mix with fork. Then add water and mix again til blended, using hands as necessary. Butter large baking sheet/pan. Place batter on pan and press with your hands into a rectangular shape, 7 1/2 inches wide by 12 inches long.
Preheat oven to 350 degrees. Bake pan with pressed batter for 10 minutes. Remove from oven and cut, with a pizza wheel, into pieces that are 1 1/2 inches wide and 2 inches long (30 crackers total). return to oven and bake an additional 35 to 40 minutes. (I tend to pull it sooner rather than later.)
This is a great recipe for customizing. We like the crackers on the chewy rather than crispy size, so the dimensions I write here, and the cooking times, produce a pleasantly dense but chewy cracker that keeps quite well for a week or so. If you want crunch factor, you can increase the water content up to the full cup, press the batter flatter, cook it the full time....you can definitely customize this recipe.
To fix the salt craving...a foody friend of mine, who is going to experiment with this recipe, had the brainstorm of sprinkling kosher salt over the crackers prior to baking...
The friend who gave me this recipe originally used honey instead of brown sugar; I sometimes add 1 1/2 Tsb brown sugar to make it a bit sweeter. If I don't have marjoram, I substitute oregano. You get the drift. Make this and play with it - and then post back your modifications!
Well, this won't hit the salt and fat taste buds.... but I have a simple cracker recipe that does hit the spot when I need something to munch on. Basically brown rice flour, melted butter, water, seasoned with a little basil and marjoram... and brown sugar (more or less according to your taste). I like a slight sweetness so I add more than the original recipe. It can be crisp or chewy, depending on how long you bake it. I'll post the recipe if you are interested.
I'm another "Other"! Although I voted "Eat to Live" I do appreciate good food, and go through periods where I really enjoy experimenting in the kitchen. Basically for me it boils down to time - when I am very busy and don't have time, or, I want to use my free time for outdoor activities, I don't focus on food very much at all, and like another poster said, sometimes forget/don't bother to stop to eat. (Not good I know)
Adopting the gluten free lifestyle sent me back into the kitchen! First it was learning to make a few basic staples (like crackers from brown rice flour) and then it was to begin to convert some of my recipes to gluten-free. This past winter I did quite a bit of experimenting... and put on about 4 pounds!