Hiding Dh Possible?

[thenshewaslike]

My husband is in the military. He has never, ever been diagnosed as having celiac though we have every reason to believe he has it because a diagnosis would almost certainly end his career. So he does his best to control his health with a gluten free diet. He does have skin outbreaks that are almost certainly DH, though almost never anywhere you could see if he was clothed. But a superior saw him in a state of undress and ordered him to the doctor. It's the first time in eight years anyone has said anything, but it can't be avoided now.

So unlike those of you struggling to get a confirmed diagnosis, we want the opposite. He called it acne and was as dense as possible when he was sent to the generic doctors. But the follow up with the dermatologist will be more difficult, though he plans to avoid actually going in as best he can. Am I understanding correctly that keeping his exposure to gluten as limited as possible can cause false negatives? What kinds of experiences have you all had with doctors' ability to start looking for DH and celiac? Is it commonly recognized?

He is also looking a little worse for wear lately (paying for some mistakes in diet a couple weeks ago), so I am also looking for any and all home or nonprescription remedies that will at least make him look more like just a guy with bad skin. At the moment, he doesn't do much at all. It really does look closer to acne than say, the pictures on Wikipedia, so we don't need miracles here. Just... less bad. We are not familiar with civilian doctors (nor can we really afford them) where we are, but I am not above calling dermatologists or friends and family working in medicine and crying for samples to clear him up as well as possible before any appointment with a military one. But I don't really know what to ask for other than maybe Aczone.

I'm not exaggerating in saying that life as we know it will end and every single thing we have planned would change should he be diagnosed. Any help that can be provided would be extremely helpful.

[tarnalberry]

If he's getting gluten, he's going to have outbreaks. If he ever has to eat with other folks, he's likely getting gluten - particularly if he (or you) isn't the one who cooked the food. If you're trying to avoid a diagnosis that badly, then just continue for him to be about as dumb about it as he can be. It's quite often missed, so you have a chance.

As for "it'll be the end of the world"... Well, yeah - the world you know now will change and your plans will have to change or be modified in some smaller or much larger fashion, but it won't kill you both. After I was laid off last year, we made a huge change to our finances/lifestyle (happens when half your income goes away) and decided to try for a kid. We're now about three weeks away from having a baby and my husband is getting HIS layoff notice this week. You could file it under "no income, no nearby family, and a newborn - it's the end of the world for us", but you could also file it under "a new, and distinctly difficult, challenge for us to figure out how to work through". At the very least, you have time to think about it before he were to be diagnosed, even if that happens. Start planning for contingencies now, even as you hope for your "best" outcome. (Realize, however, that most of us are going to think that the best outcome is the one that protects his health from nutritional deficiencies, other autoimmune diseases, cancer, and shorter life span. Trying to stay completely gluten free in an environment like that without ANYONE knowing is almost doomed to be unsuccessful.)

[ravenwoodglass]

What branch of the military is he in and how long has he been there? There have been a couple of folks on the board who were career military and had been in for a long time that were allowed to stay in they were simply not able to be deployed and had to work stateside. If your husband is having outbreaks he is getting gluten somewhere. I think it is a mistake to try and hide this from his command and could cause him a lot of trouble if it is found he is trying to hide it. Even if he does have to leave the military it will not be the end of the world and it is much preferable to developing a permanent related issue due to not being completely gluten free. Some of those issues can be life changing and even life threatening in themselves.

[psawyer]

As rwg said, there is a difference between acceptance and retention. While celiac disease is a 100% barrier to joining the military, it will not necessarily lead to an immediate discharge upon diagnosis. It will depend on the service, and what he does within the service.

For me, my diagnosis was life-changing. But it was not the end of my life, it was the beginning of my new, gluten-free life. I would not go back for anything in the world.

[Dan300]

Is your husband having any other symptoms ? or just skin problems. while there are many serious complications from Celiac desease , some people are just gluten intolerant with no villi damage and have only skin DH as a problem . It is important to find out if it is celiac disease , and also if it is , a GFD is the only way to treat it as no topical treatment helps. As far as doctors and dermatolgist are concerned , most won't think of celiac or DH even when you tell them that's what you think you have. I would'nt volenteer that I thought it was DH, all you can do is see what they come up with. Me I went thru 25 years of embarrasing skin problems, after 5 doctors I gave up and went to the VA as I thought it might be Agent Orange from Vietnam. they said no it was'nt cloracne, just don't scratch!! any way last year I came across DH symptoms (thank you Celiac.com) and told the VA I thought I might have celiac disease. they said it was so rare that it could'nt be. the VA here uses Loyola Univ. hospital doctors and derms. As they took a second biopsi last year I asked if they were taking it next to the lession? they said no as that was too expensive and would only do that if they thought that's what it might be . the lab report came back with no infections, they did'nt know what else to do and diagnosed me with nurotic excorations !! I gave up with them to and filed for an official Agent Orange claim. I'd be surprised if his doctors came up with celiac disease/DH, but it is important to find out. hope things work out, Dan

[mushroom]

Everything I have ever read, Dan, says that DH *is* celiac disease by definition, and therefore puts you at risk for other effects of gluten.

[Dan300]

I totally agree, seems to work out how much, how long, that's why people over 60 test out so high, Dan

[thenshewaslike]

His outbreaks come less from "I had no idea that would have gluten in it" incidents and more from "I'm hungry and don't those donuts/cookies/pizza/etc look really good?" incidents. Though I think being sent to medical has scared him off making those sorts of mistakes like nothing ever has before. He actually does quite well in terms of staying gluten-free even under deployment (he takes a lot of nonperishable food he can eat with him to supplement what is provided) when he isn't making really obvious and stupid judgment errors.

But back to my original question. It's less the actual lesions that got him in trouble and more the scarring from past lesions in places that don't often see the sun. The places that are typically exposed (his face, neck, forearms) have no visible scarring at all; the places that aren't and are easily reached to scratch in his sleep have quite a bit. He does not like people being able to see the worst of it, so he very rarely goes without a shirt, though that would certainly help.

So even though I'm doubtful he's even going to have to go to the derm at this point (the generic doctors ruled out it being anything communicable, obviously, and didn't care much beyond that), it would still be great to do something about the scarring both for him and to prevent this from happening again.

I didn't realize just how itchy he would get since he rarely talked about it, and we've taken some more aggressive anti-itch steps to prevent scratching that seem to be working very well, but I'm still looking for more reliable ways to speed up or mitigate the whole break out process when it does occur and to deal with existing scars.