The More I Learn The More Confused

[billmac]

Hello all,

I have avidly been reading the forum and all the informative posts but the more I learn about this disease the more bewildered I become. I have been on the gluten free diet for a couple of months now (in the first few weeks probably not as strict as I should have been as in not carefully checking labels). I mentioned in an earlier post that intestinal symptoms were not overly bothersome and a G.I. biopsy was clear. The DH (I now know why I had a rash) was my only problem but even this was never widespread over a large area, but rather was confined to my backside, knees, elbows and back of my head with no more than 1/2 dozen blisters in any one area and the severity and itchiness would wax and wane........ it would disappear all together (this was while I was still eating gluten) while at other times the intense itching would wake me from a deep sleep. Now after a period of a little activity over the last month ( over which time I thought I was fairly strict, carefully reading labels, not dining out etc) it is erupting at a level about as bad as I ever had it.

On a side note, my wife's diet is normal,and we share the toaster, some cooking utensils and other little things like that.

So I have a couple of questions...............do you become far more sensitive now you are eliminating gluten (perhaps earlier your body had some level of tolerance because of constant exposure), resulting in a bad reaction should you consume just the slightest trace. Or are the severity of the outbreaks proportional to the quantity of gluten consumed i.e. little gluten, slight rash..........lot of gluten, really bad rash. Is it the slightest trace of gluten and wham,bam, you've had it? Also how easily can the gluten get you? I have seen posts about detergents, shampoos and soaps, as well as perfumes and toiletries. Can you absorb or react to gluten via the skin or is this all about inadvertently getting a little of this in your mouth and thus the intestines which then set off the reaction. Can you really become so sensitive that if you washed your hands with a soap containing gluten, then after rinsing, wiped you hand across your mouth, you're done for. Is there some sort of definite time line between consumption and attack, or is it completely randomly individual delay? I've got to tell you all, this is doing my head in. HELP!!

Bill

[flourgirl]

I can only speak for myself as far as DH, but I believe this to be true; that over time, as your body is rid of toxins from gluten, the outbreaks get less and less severe. Before my diagnosis I had rashes to the point that after a fairly short time there was no place left that I had not had one. After the gluten-free diet, my outbreaks eventually became less widespread, the blisters (when I did get them) were smaller and less irritating.

Have patience, be diligent with the diet. Some people heal very quickly, others do not. If you have a mixed household, I think it's important that you do not share toasters, and that you have an area for food prep that is specifically yours as a gluten free zone. Washing utensils, pots and pans is fine, keeping counters etc. clean is helpful to keep stray crumbs from getting into your food. Keep reading and learning, keeping in mind that we are not "experts" but are strugging with this, too. There are a few decent books on the market, and lots of info. on line. Hang in there!

[ang1e0251]

For me, it's true that when I went gluten-free, I reacted more strongly with much smaller amounts than before. My DH sounds very much like yours. If you're sharing a toaster, you are CC your food and that can certainly cause a reaction. You need to tighten up the controls on your food and it's preperation. A pain at first, but it soon becomes second nature.

About the personal care products, there is big debate on that. First, some people are just more sensitive than others and might react to that swipe across the mouth. Second, some of us have a wheat allergy as well as celiac disease. Those folks are going to react to anything topical. I've not had allergy testing but I do react to topicals, so I avoid them. However, I don't worry about it when out in public. I still wash my hands in public restrooms.

You are right about it being confusing. You know, there just isn't any way to predict how each person will react to celiac disease. I've decided all I can do is decide what works best for me personally. I'm not going to rely on my dr or any other person. I'm going to see how I feel as things go along, get advice from people in the know and try to keep an open mind. In the end, no one knows how I feel but me.

[dhd2000]

Hi Bill, your DH sounds a lot like mine was, coming and going, sometimes severe, sometimes not, until I went gluten-free in May 07 and now am completely clear for more than a year. I had some intestinal issues as well, but after going gluten-free, those are much worse now when I do accidentally have gluten, but I no longer get DH breakouts at all!. I would suggest that you look at this as a process, rather than a diagnosis and a "fix" with the diet. My sister was also diagnosed last year and we have both discovered that while healing (which can take a year or so) there are other things we can't tolerate. I avoid ibuprofin and iodized salt and processed corn products, like msg, corn syrup, maltodextrin, as those have caused breakouts for me. My sister avoids those and distilled vinegar and vitamin E. She was undiagnosed longer than I was and I think is taking a longer time to heal. The great thing about this is that you become a lot more conscious of what works for your body, so keeping a food diary can help A LOT to find the patterns. And this website has great DH info: Open Original Shared Link Click on ask the experts, doctors and then DH.

I do think you get more sensitive as you're healing. And yes, my sister and I have both broken out from skin care products with gluten. I don't know why. I tested negative for a wheat allergy. Since everyone reacts differently and breaks out differently, it really is a matter of figuring out what works for you and that just takes time. Good luck! I hope the breakouts subside soon, I remember waking up in the middle of the night scratching myself bloody and it was no fun!

Dee

[billmac]

Many thanks for the replies. I shall take the advice and tighten up on the possibility of cross-contamination. Looks like the wife has got to go! (only joking-----we've been together for 40 years now so she's become sort of indispensible)

Bill