Making A Comeback

[Mnicole1981]

http://s1067.photobucket.com/albums/u432/MochaNicolatte81/?action=view&current=IMG_20120503_092736.webp

Making a comeback. Great! Ugh..

[kareng]

Sorry. That is so miserable. I don't really know alot about DH, just wanted you to know I'm thinking of you.

[Mnicole1981]

Sorry. That is so miserable. I don't really know alot about DH, just wanted you to know I'm thinking of you.

Thank you. I have read that DH is more uncommon in African- Americans, but I have bern going through the boards and realized that it really isn't.

[pricklypear1971]

I think DH is under diagnosed in EVERY population. It's just flat-out underdiagnosed.

I'm sorry it's coming back. It hurts like the devil sometimes.

I irritated my finger spot last night and it's itchy today. Grrr. I get it almost healed then wham!

[squirmingitch]

I'm so sorry it's back. Darned stuff reminds me of the movie Poltergeist where the little girl says "it's baaaaccckkkk". Every time you think it's gone --- here we go again.

Unfortunately it's going to keep doing that or heaven forbid STAY until you can go gluten-free. And then it can still come back off & on.

And yes, it's under diagnosed in all populations & likely to remain so as long as docs don't learn to recognize it or refuse to consider it. We had an African - American male on here not too long ago whose doctor said he couldn't possibly have dh b/c he was African American.

[pricklypear1971]

I'm so sorry it's back. Darned stuff reminds me of the movie Poltergeist where the little girl says "it's baaaaccckkkk". Every time you think it's gone --- here we go again.

Unfortunately it's going to keep doing that or heaven forbid STAY until you can go gluten-free. And then it can still come back off & on.

And yes, it's under diagnosed in all populations & likely to remain so as long as docs don't learn to recognize it or refuse to consider it. We had an African - American male on here not too long ago whose doctor said he couldn't possibly have dh b/c he was African American.

After reading the studies/med write ups re:DH I've noticed they give a 90%+ number for people who have DH are dx via biopsy - and these are the people they use in studies.

It absolutely infuriates me to read that KNOWING how many people 1) can't get biopsies attempted 2) get incorrect biopsies 3) are already gluten-free when biopsied )which falls under incorrect, I guess).

I mean REALLY. If the dx criteria for DH is the effin' biopsy (like they try to make it for celiac disease) and the effin' docs rarely biopsy the effin' rash THEN WHO THE HECK KNOWS???? And since they estimate only 10-25% of Celiacs are DH our numbers, symptoms, problems, and representations are sorely UNDERREPRESENTED in Celiac research.

I swear they've only approached the tip of gluten involvement in skin diseases/problems.

Ok, I'll stop venting now. I'm over it.

[Di2011]

I think a bit of venting is warranted on this topic.

I live in Canberra, Australia. Since January I've been working in a suburban supermarket. I would say every second or third day I see someone who has fairly obvious signs of possible DH. With head to toe DH the past year I have seen it in all its myriad of forms on different parts of body and different stages of its progress so I reckon I would recognise it anywhere on anyone.

The only person I spoke to about it was a young woman (probably early 20s) who had really, really obvious DH. And a pretty bad case of it from what I saw of it. She appeared to be a well adjusted (I'm guessing a uni student - there are many in the area), sober type. So this is how the conversation went:

Me: wow your skin is like mine (and I showed her what was under my sleeves)

Her: Yeah.. my skin has always been bad

Me: It is from eating gluten. I'm going to write down the name of this condition. You should google it. Read lots about..

Her: (silence) okay bye

I really hope that she did look into it but I will never know. I only wish that my "ingrown hairs", mild adult acne (I'm 39), itchy back (all of which I've always had) had been recognised for what it is when I was young.

I thought I was just an itchy scratchy type, overweight because I was lazy but didn't eat much ever, constipated and bloated because I didn't eat enough fruit/fibre, should have eaten breakfast more often (I always avoided breakfast, sandwiches, didn't like Italian - pasta/pizza.

-sigh-

I'm not the type who usually laments or regrets but on this issue I do. How many people are out there living their first 19, 29, 39 .. 59 years thinking this stuff is "just me" or "my fault"?

[itchy]

We should all be more active in our national coeliac associations, which would seem to be the best avenue for getting more attention for this issue.

I only follow the DH threads. Is there another area on this message board where 'political' discussions on issues relating to coeliacs takes place?

[Mnicole1981]

I know what you mean. If I had known being lactose intolerant and having to go on soy milk as an infant, asthma, being overweight all my life, GERD, a hiatal hernia, and constant sinus infections, would end up being potential celiac disease, I would have looked into it more.

[squirmingitch]

I know what you mean. If I had known being lactose intolerant and having to go on soy milk as an infant, asthma, being overweight all my life, GERD, a hiatal hernia, and constant sinus infections, would end up being potential celiac disease, I would have looked into it more.

We can all look back with 20/20 sight & see the things that were telling us but don't be too hard on ourselves ---- we didn't have computers then. And people listened to & took the doctors word for everything then.

[squirmingitch]

We should all be more active in our national coeliac associations, which would seem to be the best avenue for getting more attention for this issue.

I only follow the DH threads. Is there another area on this message board where 'political' discussions on issues relating to coeliacs takes place?

Try one or both of these:

https://www.celiac.com/forums/forum/15-celiac-disease-publications-publicity/

https://www.celiac.com/forums/forum/15-celiac-disease-publications-publicity/

and this might suit:

https://www.celiac.com/forums/forum/22-celiac-disease-support-groups/

[Di2011]

We should all be more active in our national coeliac associations, which would seem to be the best avenue for getting more attention for this issue.

I only follow the DH threads. Is there another area on this message board where 'political' discussions on issues relating to coeliacs takes place?

Okay ... another vent. This one makes me really mad.

I'm in Australia. Our Coeliac association only accepts members who have a doctors letter confirming coeliac diagnosis. So how many of us aren't in the association ?? Perhaps we need a Undiagnosed Coeliac Association (UCA).

[itchy]

I think you should be angry.

It would appear that the Australian association is guilty of the same attitude that many physicians have-that many people claiming to be coeliacs are 'hypochondriacs' or whatever.

It's a paternalistic attitude.

But one can still lobby the association anyway. If they don't respond in a positive way they are probably useless in any case, and being in the association would be a waste of money.

The Canadian association recently took up an issue I had with Air Canada in flight meals, and didn't question the fact that I wasn't a member. I thought that was good of them.