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Positive Test....skin Symptoms Not Typical


brizzo

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brizzo Contributor

I guess this is more of a venting on my part....but I was diagnosed by enterolab this month. Here's my gripe. I have no intestinal symptoms. I only have DH "like" symptoms on my scalp; NO WHERE ELSE!. Only my scalp. I have been on a gluten-free diet for two months with pretty damn good results. I still have the occasional "blister" here or there. But it has been due to CC at wendys , ignorance about certain alcohol products, and other foods. (still new at this =) I will not take meds. I DO NOT trust 1/2 the meds out there, and refuse to poison my body by taking them.

I guess my question is ....has anyone else heard of someone having DH on the scalp only, or am I just a freak? :ph34r: Just curious. And yes, I tested positive at enterolab. My results are below.


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CarlaB Enthusiast

I used to have a rash on my scalp that I never had tested for being DH. I asked my doc about the rash (she also practices holistic medicine along with conventional). She said it was from the constant inflammation in my system ... my adrenals were fatigued and unable to come up with the hormones necessary to heal the rash. Now that I'm addressing my adrenal fatigue, the rash is clearing up.

frenchiemama Collaborator

I know that it is fairly common to get DH on the scalp. Only on the scalp? Not sure, but everyone is different. DH is always supposed to be symmetric, but I have one spot that isn't (I got it on both hands, both knees, both ankles, but only one elbow). Not typical, but not impossible either.

  • 2 weeks later...
almostnrn Explorer

I had spots on my scalp until I gave up my beloved Aveda shampoo which was pretty much like liquid gluten, lol. I have not heard of anyone just getting it in one area but then again if I had a nickel for every time a dermatologist told me "you can't get DH there" I'd be a millionaire. Be happy the diet is working and don't press your luck...I have found mine got worse after time.

mouse Enthusiast

One of my doctors was telling me that a friend of his in medical school got diagnosed with Celaic Disease and the only thing he had was DH on the scalp and only the scalp. He had no symptoms at all. Just the terrible rash and itching on his scalp.

  • 2 weeks later...
dyankeetoo Newbie

Hi, Brizzo: I'm pretty much a lurker here, but I have to tell you...I've had the scalp problem my entire life, and I'm 59 years old. Only recently developed the blisters all over, and I haven't had the biopsy yet. I'm betting on a positive, though, as I've been gluten free for three months, and I've begun to see a positive difference in my energy level and...HOORAY the constant nausea and stomach aches, running like a crazy person to the jon are gone (except for one instance when I made meatloaf with corn chips and paid dearly). Apparently I'm one of those who can't tolerate corn either.

Do the scalp itchies clear up when you take antibiotics? Mine do, but come right back as soon as I've finished the course. Thank goodness I have thick hair.

Best,

Laurie

  • 3 weeks later...
bwizzle Newbie

Hey brizzo and anyone else experiencing problems here. I want explain my situation. I am a 22 year old male and have been experiencing scalp "pustules" going on 5 years now. I have been to numerous doctors and had every test done (blood and biopsies) and yet to find a solution. Antibiotics work and when i go off of them, my condition returns. I am seeing an allergist and he bleieves its a food allergy. After doing some research I believe it is DH. I have just started my gluten free diet along with a detox system. I do no really have any other symptoms besides these itchy bumps on my scalp. Also my skin gets really itchy and I was wondering if anyone else experiences this. And the symmetric thing, yes it forms symmetrically only my scalp. I am sick of seeing new doctors and putting antibiotics in my body. I went through college with this plague and i know how hard it is to deal with. I am going to give this diet a shot because i am at the end of the road.

Brad


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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
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