Jump to content

Follow Us:   Twitter Facebook Celiac.com Forum RSS      

Get email alerts  Subscribe to FREE Celiac.com email alerts
arrowShare this page:
Subscribe Today!

Celiac.com Sponsor:
Celiac.com Sponsor:


Member Since 29 Jul 2009
Offline Last Active Aug 31 2011 06:35 PM

#716414 How Many Have Dh, Really?

Posted by on 14 July 2011 - 01:44 PM

I think there could be significant numbers of people who have Dh that don't get diagnosed. Just as with any other medical issue, it would seem logical that there would be a degree of variability to the presentation of the rash. So a "classic" case might be easily recognized. But, someone else's rash, which does not quite fit that classic presentation, might not be.

I could be a case in point. Now granted, I do not have an "official" diagnosis. (my husband was laid off at the time.) My rash was my "turning nifty fifty" present. It started on one ankle, then the other. Not my elbows or knees!

Why do I think it was Dh? It was extremely itchy, so much so that I would wake up in the middle of the night, unconsciously scratching. And the spots were very red. Not all of them were always blistery - another thing that didn't fit perfectly.

So why do I think this was DH? I had the rash for 10 months and NOTHING helped it, it only got worse. It was when my daughter went on a gluten free diet - for completely different issues - that the light bulb went off in my head. After reading and researching, I went gluten free. Gradually the rash began to heal. More telling, a month into the diet, I "went off the wagon" and within 2 days had a fresh crop of itcy witchy blisters.

As my rash healed, I was left with reddish purply spots that took months to fade. Two years later, most of them are gone now.

Self diagnosing is risky, but i didn't have the dollars at the time to throw at it. From what I have read, the way my rash began may be less than a classic presentation. But, the time course and manner of recovery after going gluten free is more typical.

So yes, I think there is the potential for DH being more common, and less recognized, than some numbers indicate.
  • 2

#571262 How Do I Break The News?

Posted by on 28 October 2009 - 04:53 PM

I understand the trepidation you are feeling because I have not disclosed my recent gluten free status with very many people either. My family in the local area consists of grandma ( my mother in law) and my husband and my daughter (also gluten free). They are all "in" on this and wonderfully so.

At work I've only confided in two people. As far as my family "from away", only my sister and one sister in law (SIL's daughter also affected.)

This past summer I went to a family gathering and glutened myself because I felt awkard about explaining and didn't want to either draw attention to myself or turn down their hospitatlity. I do not have an "official" diagnosis. My evidence is A) response to the diet and B) what happened after I ate their pasta....

at some point - the next time I travel to be with them again - I will have to explain. I think some will be receptive and some will think this is all slightly kooky but oh well. I say that because I know what the reaction of some family members were when my SIL brought special foods for my niece to family gatherings. Shame to say, I was one of them. I think seeing these reactions - and having them myself - is the incentive for my being a more or less "in the closet" gluten intolerant person, up til now.

So I am still learning about dealing with the social aspects of things. LIke today at work, "come join us for X's birthday at 2pm! Double chocolate cake!" As fate would have it, an immediate issue prevented me from taking that break, not at all manufactured. But this won't be the last time.... sigh.

However I will offer up a sign of encouragement. It happened last night and its making me think I shouldn't be so reticient about telling people. Even tho my mother in law has been pretty supportive, we haven't always had the best relationship. Pretty typical DIL - MIL conflict stuff; in our case it was my approach to child rearing. Now that the kids are 17 and 22, and she is pleased with the outcome, all those issues have been laid to rest. Animosity has been replaced with real affection on both sides of the street. She was very sweet this past summer when I explained why I was trying the gluten free diet for myself and my daughter... she was willing to modify some of her recipes (as a widow, one of her joys in life is cooking for us.) I would make gluten free bread crumbs for her, and then she would use those instead of the old Progresso. Oh, and then she found the gluten free Betty Crocker line... (Grandma, none of us really need more baked goods... gluten or not). OH well, it made her happy, and after the family had a sampling I took the remains to work, where they got devoured. (no one knew they were gluten free) And now when she grocery shops, she is checking out all the gluten free options.

Last night we had this amazing conversation. I had given her a sample of brown rice pasta to try. She's had it awhile and hasn't tried it yet. But she has been thinking back and now starting to "connect the dots". Grandma is a stomache cancer survivor - diagnosed in 1992 when my daughter was just 1 year old. Being a survivor of that is a pretty amazing statistic.... She did have 2/3 of her stomache removed, and had to learn how to eat all over again as a result. Maintaining a healthy weight is a real challenge for her.

She pretty much tries to eat thru the day. And for along time she was starting her day with cream of wheat. She was feeling some vague discomfort, which she couldn't pin on anything specific for awhile. Then she switched her breakfast to eggs, and that feeling went away....

Cut to the chase, MIL is now wondering if gluten has not been her problem for a long, long time. She recounted to my how when she first got married (into a very Italian family) she remembered not feeling well after meals at her inlaws. It was kind of vague and she was never able to pinpoint it to anything specific. She just frequently did not feel well after eating.

So she is saying hmmmm... which is pretty amazing if you knew her. At any rate she is going to try the brown rice pasta sometime this week.

point of my story (and I'm preaching to myself as much as to anyone else) don't be reluctant to tell your family and friends. Don't assume their reactions. You never know!
  • 1

Celiac.com Sponsors: