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Help Me Understand Dh


tmgjcg

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tmgjcg Newbie

My husband had a biopsy this morning for diagnosis of DH. This is all happening very rapidly for us and we are very confused and seem to find conflicting information on the web.

He has had a rash (blisters, pox-like) for nearly a week. It is primarily on his knees, elbows and buttocks. But also present on the back of his neck, lips, arms, thighs and torso. He itches like crazy. This was first diagnosed several days ago as chicken pox, regardless of the fact that he had it as a child.

The dermatologist that we saw this morning made the connection between his rash and on-going digestive symptoms. He is frequently constipated and has abdominal bloating/pain. Thus, the biopsy for DH.

Help us understand... if he does test positive for this... will he have the rash forever? If not, how long after starting a gluten-free diet do you begin to experience relief from the rash? Are you able to control the rash through diet alone? (No gluten = no rash)

Any information you could offer would be very appreciated. We're very confused and scared at this point. Thanks.


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YoloGx Rookie
My husband had a biopsy this morning for diagnosis of DH. This is all happening very rapidly for us and we are very confused and seem to find conflicting information on the web.

He has had a rash (blisters, pox-like) for nearly a week. It is primarily on his knees, elbows and buttocks. But also present on the back of his neck, lips, arms, thighs and torso. He itches like crazy. This was first diagnosed several days ago as chicken pox, regardless of the fact that he had it as a child.

The dermatologist that we saw this morning made the connection between his rash and on-going digestive symptoms. He is frequently constipated and has abdominal bloating/pain. Thus, the biopsy for DH.

Help us understand... if he does test positive for this... will he have the rash forever? If not, how long after starting a gluten-free diet do you begin to experience relief from the rash? Are you able to control the rash through diet alone? (No gluten = no rash)

Any information you could offer would be very appreciated. We're very confused and scared at this point. Thanks.

I can understand the confusion however there is no reason to be scared. This is a very curable disease. Its not at all like cancer etc. etc. Though you do have to stay on diet and not go off it. Some people notice a difference in a couple of weeks, others take 3 to 6 months or more. Not going on or staying on diet can however create prime conditions for much worse conditions, so its better to be on diet than not in my estimation.

I used to have this same kind of rash and bumpy blisters in my scalp, sides of face and neck and all down my back and front. This went away years ago when I figured out I needed to go off wheat and related grains in my diet. If I eat the wrong things it starts to come back--including cankers in my mouth. My brother has noticed good effects in just 2 weeks. His rash and flaky exczema has dissappeared!

My mother however is taking longer perhaps in part due to her age and also perhaps because she hasn't always been sticking to her diet. It affedts her memory too so it is very important she stay on diet however. Finally I think I am getting this across to her.

It helps to take detox herbs too plus bromelain/papain and at first especially pancreatin enzymes. (Please note my posts elsewhere--dandelion, burdock, yellow dock, licorice root etc.).

Co-enzyme B vitamins are a great help as is Vit. D (I use cod liver oil sinc it also has A and Omega 3's). Calcium, mag., zinc and other minerals are important. I use sea minerals I squirt into my mix of supplement water plus also take kelp caps since a tendency to low thyroid conditions often accompany this DH. The diet and kelp helps to contradict this thyroid problem.

You have to get nitty with this diet often times. Really. No cheating and no sharing or using glutened cutting boards, pans etc. Plus change shampoo and soaps to gluten free. Even cat or dog food should be gluten free if he is around it or handles it.

Grinding up a fresh tablespoon of flax seed with a dab of apple pectin in a coffee grinder (used just for this) then mix in water and chase with another glass of water--is great for creating good elimination -- as well as more Omega 3's. Primrose Oil could also help since DH folks often have low essential fatty acids...

Sometimes other allergens are at play since often with DH you also get leaky gut--which needs to heal. Slippery elm and marshmallow root help here as does the bromelain/papin and nattokinase.

Good luck!

Yolo

Pegster Apprentice

DH was actually a lucky diagnosis for me. A positive DH biopsy means you have Celiac disease and you need to cut gluten out of your diet completely. The rash will go away. Mine went away very quickly, but I still have flare ups after three years. I am thankful to have a definite diagnosis from my skin biopsy because so many people have intestinal difficulties for years before getting a diagnosis of Celiac disease. Your husband's symptoms sound classic. Good for the doctor for considering it! If the biopsy is positive, return often to this site for help getting used to the dietary and life-style changes. There is medication, but many doctors don't recommend it long-term. The diet works. Good Luck and don't be scared! :o

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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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