Relapses And Complete Erradication Of Symptoms

[brizzo]

just a question for all of those with dh. Question # 1...upon starting the gluten-free diet, how many "outbreaks" or relapses did you all have while on a 100% gluten-free diet. Question #2 ... how long where you gluten-free untill your skin symptoms where completely gone w/o relapse? Or will we always have occasional "outbreaks" here and there?

[SarahTorg]

just a question for all of those with dh. Question # 1...upon starting the gluten-free diet, how many "outbreaks" or relapses did you all have while on a 100% gluten-free diet. Question #2 ... how long where you gluten-free untill your skin symptoms where completely gone w/o relapse? Or will we always have occasional "outbreaks" here and there?

I'll be watching for responses, because I'd like to know too!

[teebs in WV]

Well, I have to start off with the obligatory "everyone is different". I was diagnosed with DH last October and immediately changed my diet to gluten-free and also began taking dapsone. Although, as you know (and if you don't you will learn) it took a few months before I really understood how difficult the diet is at the beginning. There were many things that I ate that I thought was ok, but later found out they were not. I am now very carefuly and know what to look out for. I am now a nut about it and make sure there is no way any of my food is contaminated by gluten in our home (my own butter container, peanut butter container, toaster, jelly, lunch meath, cheese, etc.)

Anyway, here's my story pertaining to what you really asked. As I said above, I started taking Dapsone immediately after being diagnosed. Without it, my outbreaks would have continued (even following the gluten free diet). As a matter of fact, I still had intense itching for about 11 months (but did not have the blisters). It has just been within the past month that I haven't itched like crazy. My dermatologist increased my Dapsone dose about a month ago and that seemed to help tremendously.

I am afraid to stop taking it, or to even decrease it. I assume that if I eat anything with gluten I will have a reaction, but I have no intention of testing it to see what happens. I would NEVER want to go through that again!

Hope my ramble helped you in some way - I am sure others who have lived with the disease longer can provide some different points of view.

Take care,

Tracy

[angmoore]

Who should I get my daughter to see first - a dermatologist or an allergist? She can scratch herself and get welts - no rhyme or reason it seems to me for the breaking out in hives. We're 90 miles from her celiac disease and Diabetic doctors, but we have a diabetic appointment in a couple of weeks. It would be great if I could get something scheduled on the same day. I just have no idea right now who to see first. Thanks!

[teebs in WV]

My dermatologist is the one that diagnosed me - he took one look at me and said he was very sure that was my problem (this was the first time I saw the guy - I was very lucky, I know). DH is not an allergy - so I would assume you should take her to a derm. They can do a biopsy if they think that is what it is. However, hives is not the same as a DH outbreak. DH is blisters - I mean oosy gross blisters that itch like crazy. After my DH started to get under control I did get hives, which isn't much better, except they don't leave the scars that the DH blisters did.

I hope you find her problem - I hate for anyone to go through it - especially little ones. I don't know what I would have done if my kids would have went through what I have.

Tracy

[Sophiekins]

With the caveat that everyone is different, here's my story: I was diagnosed with celiac disease and DH in July 2000. By that time, I had lived with atypical presentation of acute DH all over my legs and arms (though not, thank god, on my face) for seven years - if I went out less than fully covered, throat to wrists to toes, people stared and whispered. I promptly cut ALL potential sources of gluten out of my diet - wheat rye oats barley spelt kamut millet buckwheat amaranth arrowroot, as well as corn and soy (1/3 of celiacs will have 'celiac' reaction to corn and/or soy. . .though they do not 'technically' contain gluten, they contain similar proteins that some celiac systems lump in with gluten). I thought I was pretty successful, as the digestive symptoms disappeared quite quickly, though I may have experienced some CC as I was living in a busy bread-loving house at the time. I couldn't take either of the standard drug therapies (liver problems), and so have not taken prednisone or dapsone, and can't speak to their success. A strict gluten-free diet eliminated the itch (I can now identify gluten contamination by the prickling in my skin after a meal) but to say that the skin lesions are slow to disappear is an understatement. From a pharma perspective, I did have limited success with a daily dose of antibiotic (the one they use commonly for staph infections was the most successful, it almost eliminated the fluid coming from the blisters - though they were tested for staph and were negative - and the skin started to heal) combined with a gluten-free vitamin B supplement. . .I believe it was a two week course of 50mg antibiotic and the standard otc oral vitamin B, rest for two weeks and repeat once (though this is not a long-term solution as the antibiotics are, on the whole, bad for your system).

In terms of relapses: The frequency of your relapses will depend on how strictly you adhere to the gluten-free diet - in my experience with DH sufferers, every time you slip, you will have a relapse, and the severity of your relapse may not be related to the severity of your slip. In my case, one tiny slip after a prolonged slip-free period provokes a dramatic relapse, but a series of further slips makes little difference to the intensity of the relapse, only to the duration.

With regards to the complete eradication of symptoms, I have bad news and good news.

The bad news: the DH-causing protein remains active in your bloodstream, causing immune problems for up to thirty days after ingestion. This means that every time you eat a tiny bit of gluten, your non-gluten-free status gets reset for thirty days. Slip once a month, and you may never be truly gluten free. This is why so many DH sufferers find themselves stuck on Dapsone and unable (or too terrified) to go off it.

More bad news: DH sufferers typically react not only to injested gluten, but also to aspirated gluten (breathed in) and contact gluten (proteins in detergents, lotions, etc). So check your shampoos, cosmetics, soaps, deoderants, perfumes, colognes, lip glosses/balms, shaving creams, air fresheners, toothpastes, mouthwash, prescription drugs, otc medicines, laundry soap, fabric softeners, lotions, sunscreens, tanning creams, bug repellants, hand soaps (watch out in particular for ones that are vitamin enhanced - these are BAD), eyedrops, contact lens solutions, nasal sprays, and anything else that you put on any part of your skin or mucal membranes. Next, look for potential sources of aspirated gluten: avoid bakeries that produce non-gluten-free breads, skip the aisle in the grocery store with open shelves of baked goods, stay out of those quaint authentic pizzerias where they toss dough around. . .anywhere you might find flour in the air. Then go through your workspace (since you spend much of your day here, this is a worthwhile thing to do, although it may make you uncomfortable and your coworkers may not understand how serious this is): you need to separate the items you use regularly from people who regularly handle gluten - and this means most of your coworkers and cleaning staff. If a third of people don't wash their hands after using the toilet, how many people wash their hands after eating a sandwich? I recommend getting your own keyboard and mouse (and phone, if you use this for more than a third of your day) and being absolutely anal about not letting ANYONE but you use them - this includes coworkers who just want to show you something for a second, and tech support guys coming to fix your computer. Ask people to talk you through the task instead, and if they ask for an explanation, explain that you have a serious medical condition that is triggered by contact with common substances and that they could make you seriously ill. It's the truth. Also make sure that your managers (and coworkers) are aware that your workspace is off limits to others when you aren't using it - I've found that the simple expedient of locking up my keyboard when I leave the office is enough to keep my workspace empty.

The Really Bad News: your skin takes seven years to completely replace itself, flesh to surface. This means that there could be up to seven years of damage under the worst of your skin lesions. 'Nuff said.

The GOOD News: I have lived largely gluten free for the last six years. I have the occasional significant relapse - usually about once or twice a year, and usually accidental - and minor ones about once a month (when minor relapse is defined as existing lesions oozing and reddening for a few days). Six months ago I took the opportunity to eliminate gluten entirely from my living environment (bye bye bread-eating roommates), and my skin improved so much that it looked better each day when I got up than it had the night before when I went to bed. Hard? Definitely. But on the sixth anniversary of my diagnosis, my partner and I went out to dinner (at a restaurant where the chef is married to a celiac) and I wore a short dress with no sleeves - baring smooth clear skin (bar a handful of scars from the worst of my DH lesions) on my arms and legs.

The End Result: eliminating ingested gluten from your diet SHOULD prevent further damage from happening. The good news is that this isn't so hard once you get the hang of it. Eliminating contact gluten from your life will clear up the existing problems and prevent future ones from occurring. Unfortunately, this requires dedication and constant vigilance. My best guess: eliminate ingested and contact gluten, educate your family, friends and coworkers, hydrate, get plenty of sleep and vitamins (you are rebuilding your body, after all) and you could be all clear in as little as six months or a year. Maybe sooner, if Dapsone works for you, though I would talk carefully to your doctor and your pharmacist - it has NASTY side effects.

Good luck! (And apologies for the length of the post!)

[ravenwoodglass]

I promptly cut ALL potential sources of gluten out of my diet - wheat rye oats barley spelt kamut millet buckwheat amaranth arrowroot, as well as corn and soy (1/3 of celiacs will have 'celiac' reaction to corn and/or soy. . .

You have given some excellent info here. I also have DH and know it can take a very long time for an outbreak to heal. Some of mine have taken up to 5 months.

I do want to ask if you can tell me why buckwheat is included in the foods to avoid list. It has been my understanding that buckwheat is actually a grass. I consume it all the time with no gluten reaction. Have I been glutening myself without knowing it?

[Michi8]

You have given some excellent info here. I also have DH and know it can take a very long time for an outbreak to heal. Some of mine have taken up to 5 months.

I do want to ask if you can tell me why buckwheat is included in the foods to avoid list. It has been my understanding that buckwheat is actually a grass. I consume it all the time with no gluten reaction. Have I been glutening myself without knowing it?

Buckwheat is not a grain, and is on the safe list. You can keep on eating it!

However, it is on the "avoid" list for those who have dermatitis that is related to nickel allergy...in that case, it may need to be eliminated from the diet for awhile and then introduced once symptoms have disappeared.

Michelle