Seeking Hope To Ward Off Depression

[FlowerPower]

Hello All

I joined the forums in an effort to help a friend who was recently diagnosed with celiac disease and DH. My friend had been suffering for months with skin problems he thought was eczema although it was "different" (he was diagnosed with eczema when he was a child). Being stubborn (as many men are ) about going to a dr., it took him months before he went and there he was told his problems were not eczema but celiac disease/DH.

My friend is suffering greatly with the DH. He has been (as best he knows) gluten-free since his dianosis. He is taking Dapsone, hydroxyzine (sp?) and just finished a round of prednisone. However he remains in misery. His skin is affected all over his whole body; he's itching/blistering continually with only brief periods where he's not constantly scratching. He is becoming VERY despondent, not seeing any improvement from being gluten-free and religious with the Dapsone. But being so recently diagnosed (about a month or so ago) and not "experienced" in the celiac/gluten-free/DH lifestyle, he still has many questions.

*The reason I am here: He is suffering so much, that it is to the point that he says he does not want to live any longer if this is what the rest of his life will be.*

My friend isn't on this forum himself as his computer died and hasn't been repaired yet. I am hoping to get some answer here that will give my friend hope that he is not facing a life that revolves around NOTHING but constant itching/blistering. So...here goes...

1) How long does it take for the Dapsone to bring relief from itching/blistering? (He's been on it about a month or so)

2) Does Dapsone work for everyone? If not, are there EFFECTIVE alternatives?

3) If you were to accidently ingest gluten, how quickly does a reaction show up through the skin?

4) Are there varying degrees of DH...where one person has mild reactions and others more severe?

5) Is there Life After Celiac/DH? Is is possible to manage the DH to where you can live a normal life?

Right now my friend's life consists of nothing but itching, oozing, taking pills, taking baths and then taking the hydroxyzine plus two shots of whiskey to knock himself unconscious...then he wakes up and it starts all over again. There is no fun or joy in his life because every waking minute is spent in itching/blistering misery...and he doesn't want to live this way.

Can anyone offer hope that this WILL improve? I told him there are thousands of people living with DH so there MUST come a time when there is improvement to where you can live a normal life.

Please give me some words of encouragement to pass on to him. Thank you!!

Suzanne

p.s. If anyone knows of a GOOD, DH-knowledgeable Dr./Dermatologist in the Syracuse area, I'd appreciate that information.

[key]

Suzanne,

I am sorry your friend is having such a rough time! From what you said, it sounds very miserable to say the least. He definitely needs to go and see a doctor about the constant itching. He could take Benadryl to help maybe(make sure there is no wheat it in and ask a doctor first). THere may be other drugs that help the itching. Also he should see a doctor for depression.

Also he needs to be sure that all the soaps, shampoos, conditioners and anything that comes in contact with his hair or skin should be checked for wheat. Almost every hair and skin product out there does have wheat in it or a form of oats. Be sure he isn't eating oats either. SOme docs are saying they are safe, but with his case I wouldn't risk that. Be sure he reads the list of things that may contain gluten. THings like modified food starch, natural flavoring or spice, etc. can all have wheat hidden in these ingredients. He needs to be sure that his food is gluten free. He needs to make sure he isn't sharing a toaster with anyone eating bread with gluten in it. Even pots and pans. Becareful about eating out and cross contamination. I think if I were him I would take a break from eating out, because the risk of cross contamination is pretty high in alot of restaurants.

I know others will have lists and stuff for you to check out and this website has some lists.

THis is a wonderful place for encouragement and if your friend joins, I am sure that others could encourage him. It is very sweet of you to be looking out for him when he is feeling so low.

Monica

[Fiddle-Faddle]

Hi, Suzanne,

I took Zyrtec for the itching, and I was also on prednisone for 10 days. I wonder if Zyrtec was also helpful in lessening the "allergic" part of my reaction? I don't know. I made my rash worse, initially, because I had never heard of DH (and did not have any other obvious signs of celiac disease), so I soaked in oatmeal baths and put lotions on that contained oatmeal, and worse, wheat germ oil.

I also got paranoid and stopped using fabric softener, scented soap, and scented laundry detergent, just in case that was exacerbating things, and rewashed a bunch of clothes, sheets, and towels in just plain unscented detergent (just what I needed with 3 children: more laundry!)

I noticed that my rash (and I'm not positive it was DH, I'm just assuming it was) itched MORE as it dried up and healed. Baby oil helped. Ithink the Dove lotion products are gluten-free, too.

I was never on Dapsone as the idiot-dermatologist insisted there was no way I could have either DH or celiac disease.

There are a lot of things that you wouldn't expect would give you a reaction, but you have to be careful of them: oatmeal, most Asian condiments and soy sauces, anything with barley malt (I had thought Rice Krispies were gluten free--I was wrong), anything containing "modified food starch," etc. Even a lot of ICE CREAMS have wheat starch in them (and who would think to look in ice cream?)!!!!

I seemed to feel less miserable when I was busy, and when I could get outside, but HEAVY exercise seemed to make it worse, as did hot showers and baths (cool worked, but made me miserable as it was January when I had the rash). Ice packs on the itchiest places also helped.

Good luck, and good for you for being such a good friend and support!

My mother has always insisted that anti-perspirant is a terrible thing that keeps you from excreting toxins that you would otherwise excrete in your sweat. Maybe if your friend switches to deoderant, he'll excrete whatever's in his system faster (very unscientific, but it's just a suggestion from someone who knows how desperate you can feel when you seem to be allergic to your own skin)?

Finally--laugh. Rent funny movies (and watch them with him). Take him to a comdy club, go to a funny high school musical, go to the playground and play on the swings and jungle gym, play Hide-and-Seek. Science has proven the medicinal benefits of laughter.

[Pegster]

What a great friend you are! My DH pretty much disappeared as soon as I went gluten free. I get outbreaks every now and then and usually can figure out when and how I got accidentally glutened (usually at a restaurant!). I never went on dapsone, but my understanding is that it usually works very well and very quickly. Perhaps your friend needs a different dose? I think when your buddy gets his computer up and running, he should pop in to this site and read the many posts. My doctor and my dietician were not able to help me at all with dietary questions. They just weren't familiar enough with the disease. I learned 99% of what I live by on this forum from experienced gluten free eaters. The diet seems incredibly complicated and restrictive at first, but I am used to reading labels now, and new labeling laws DO make it easier. So some basics: stick to plain meats, vegetables, rice, potatoes, fruits at first. Then start adding simple ingredients like butter, lemon, fresh herbs, Kitchen Basic broths (square boxes of soup). Find rice noodles on the Asian food aisle, Wheat free soy sauce is available at health food stores, I get baked goods shipped from Kinnickinnick.com in Canada (donuts, cookies, muffins etc.). I love to eat. The diet was a challenge at first, but it's no big deal today. AND the dh WILL go away, but it's hard to be patient.

[Judyin Philly]

HI

You've gotten some good info. I'm so sorry I don't have any knowledge about the drug but wanted to send my cyber 'hugs' to you and your friend. You are a wonderful friend and I hope you can get some answers soon.

Judy in Philly

[lovegrov]

First, how much dapsone is your friend taking? Maybe it's not enough -- although he should NOT take any more without consulting with a doctor. Serious side effects are very, very rare but you must be monitored.

If he's not seeing a dermatologist, he must do so. Call around and find one who is familiar with DH.

He must avoid foods heavy in iodine -- iodized salt, processed foods with iodized salt, and seafood come to mind. Foods with tiny amounts are OK as we all need some iodine in our diets. After he's been gluten-free long enpough he can eat iodine again.

He absolutely must be completely gluten-free, because even small mistakes can set you back, even with the dapsone for some people. Eating out right now would be a big no-no. Yes, some cases are more serious than others, just like with celiac. My DH went away immediately after going gluten-free but for others it has takne months. Most people are, however, helped by dapsone if they're taking enough.

If your friend has the money, he really needs to get his computer fixed or get a new one. The Internet can be extremely helpful in helping him learn how to avoid gluten.

I've never heard of anybody who hasn't eventually been able to get the DH under control. It can be done.

richard

[Nantzie]

If he's not knowingly getting gluten, he might be getting some hidden gluten somewhere. Check his personal care products -- shampoo, soap, chapstick, lotions, etc. I think I even heard of toothpaste once, but don't remember anymore. The point is, you have to check everything .

Also, the common wisdom for non-celiacs is that products with oatmeal like bath soaks, lotions, etc., will help with itching. That's true if you don't have celiac. But if you have celiac, chances are huge, huge, HUGE that you will react to oatmeal the same way you react to wheat, rye and barley.

Sometimes also you'll be told by people in healthfood stores who are unknowingly misinformed that things like spelt are gluten free. Spelt is an ancient form of wheat, and unless you really look into it, you don't find that out.

You also have to replace cooking things like wooden spoons and wooden cutting boards (not sure about the plastic ones....) The gluten gets down into the crevices and gets into everything that comes in contact with it. The same thing happens with scratches in nonstick pans. It just gets into the scratch and doesn't come out.

So, this may take some detective work, but you may end up finding out that something he was using was causing or worsening the problem.

What kind of whiskey does he drink? I swear at one point here there was a discussion that a certain type of alcohol may have the potential for cross contamination and it had to do with something about the barrels they were aged in.

I don't get DH, but when I drink vodka, my hands get dried up and kind of rough and scaly. I looked into it, and it turns out modern vodka is made from wheat. I had checked to see if vodka was okay before I even tried to drink it and some of the most hypersensitive to gluten people on here said that they drink vodka with no problem. I guess I must just be one of the "lucky" ones who react to it. The only time my hands ever get like that is when I drink vodka. I tried potato vodka, but that stuff gives me a nasty hangover with just one drink, so I'll pass on the vodka from now on.

I hope your friend is able to get his computer fixed soon. I know this board is such a life-line for all of us, especially when we're first diagnosed or having problems. It's nice to know we're not alone in this mess.

Nancy

[Lauren M]

I do not suffer from DH, but it seems that you've gotten good advice from some others here. However, I really think that the issue of your friend's depression needs to be addressed. If he is talking about not wanting to live like this, I would be concerned. That is a lot of responsibility for you, as a friend, to bear - maybe he should see a psychiatrist? An anti-depressant may help through the DH healing process.

Best of luck, and let me know if you want to know any specifics about some common anti-depressants, I've been on Prozac and Zoloft and know some info about others They really do help though.

Good luck, you seem like a wonderful friend.

- Lauren

[damcanuk]

I am taking Dapsone too...it took a few days to help. I needed somethng for immediate relief as well and benedry and zrytec ...all that kind of stuff did nothing! I would wake up in the morning with blood under my fingernails from scratching so much. My Dermatologist gave me a topical creme called "Elocon" It is a GOD SEND!!! Any Dermatologist should have a free sample your friend could try! It brings relief within kust a few minutes! I break out if I am stressed or accidentally ingest gluten, usually within hours. Usually my first sign of accidental ingestion! Have your friend try it!!!! I am sure it will help!!! Good luck! I know how it feels...trust me!!!

Lynette

Gluten free for 7 years 06-99

oldest son diagonsed 10-07

daughter diagonsed 05-99

[jerseyangel]

I don't have DH. but I do have eczema. The Elocon is really good--it brings down a flare up of the eczema in a day or two. My GP prescribed it.