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Possible Dh For My Hubby...


buffettbride

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buffettbride Enthusiast

Ok. So we'll start with a little background. My husband isn't my daughter's biological father, but he adopted her as a toddler. My daughter was diagnosed with Celiac almost a year ago. She did have skin issues and of course they cleared up right away when going gluten-free. It was always classified as eczema, never DH, even through the Celiac diagnosis. It only flares up if she is glutened, and it is the same eczema-like rash.

However, I am not here today to talk about my daughter. This is about Hubby. Long before we knew anything about Celiac disease or gluten-free, my husband has had this weird rash between his fingers on one hand. The rash consists of little white, opaquish bubbles filled with clear liquid. Sometimes there is just an isolated spot on one finger about the size of a dime, and sometimes it flares up and runs the length of his whole finger and starts spreading to his palm. Of course, it oozes (he even got a lovely MRSA infection when the skin was open, but I digress...). He has had this rash off and on since his teen years, but pretty consistently the last 5.

Well, last year around May, our daughter was diagnosed and our gluten-free journey began. We made our house gluten-free, but Hubby, my son, and I do eat gluten out of the house. We can go weeks, though, without any gluten, and we are definitely gluten-lite.

A few months ago, after a serious gluten-bender when Hubby and I were away for the weekend (kids were at grandmas), his hand started to flare up again. I made a comment that it hadn't really been bothering him much since....you guessed it! When our daughter was diagnosed and the family went gluten-lite.

We started putting some other pieces together--flakey, yellow, and frequent stools (he also complained of always having to go or his stomach being "not quite right"). All these things were milder when gluten lite.

We have determined, of course, that he does much better without gluten. He is the kind of person, though, who will need a proper diagnosis to stay committed to the diet. That said, based on my description of his finger-cooties, does it sound like it could be DH? We are going to persue diagnosis that way first.

Anyway, how odd it is that a father/daughter of non-blood relation may both have Celiac and at minimum, gluten intolerance.

Are dermatologists just as uninformed about DH as most docs are about Celiac in general?

What kind of battle are we looking at?


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RiceGuy Collaborator

More and more I am of the opinion that Celiac (or at least gluten intolerance) is much more widespread than current statistics indicate. Maybe even everyone.

Sorry I can't give any idea of what dermatologists know or think, except every person I know who I believe to be Celiac has gotten a diagnosis of something other than DH, wheat allergy, or anything connected with diet, much less gluten.

YoloGx Rookie
More and more I am of the opinion that Celiac (or at least gluten intolerance) is much more widespread than current statistics indicate. Maybe even everyone.

Sorry I can't give any idea of what dermatologists know or think, except every person I know who I believe to be Celiac has gotten a diagnosis of something other than DH, wheat allergy, or anything connected with diet, much less gluten.

According to what I have read in the book Dangerous Grains and elsewhere, 30% of north Europeans and Italians have the gene for celiac and 10% of the rest of Europe also has the gene. It only shows up however from a stressful incident so not everyone has it that could. That being said it isn't at all odd that people in the same household but not genetically linked could both have celiac or DH especially if they are of European descent. This of course is way different than most doctors in this country are willing to believe. They seem to have this belief before science in this area since it seems that amongst our medical community they believe somehow that celiac falls somewhere in the category of old wives tales and superstitious quackery from the 19th century (i.e., where diet and natural remedies were paid attention to). Thus go to Europe for your statistics plus a few celiac centers here in the States. Maybe by going to centers here they can recommend a good gp since fortunately things are starting to change for the better.

buffettbride Enthusiast

Hubby is Italian. I am (and my daughter is) mostly English/French/Irish, in that order.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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