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Question About Dh And Testing For It.


BellaBella

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BellaBella Rookie

Per some of my previous posts/threads I am having trouble getting a formal Celiac diagnosis. A quick rundown: negative blood panel, negative pathology report from biopsy but doctor did see visual flattening of the mucosa during endoscopy....and obviously I have many many symptoms.

But one of my other severely irritating symptoms is intense skin itching. I have 5 or 6 places on my body that itch all day long and get way worse in the evening. In some of those places I have little patches of slightly darkened skin. The patches sorta look like dry skin but they are the itchiest spots on my body. They look NOTHING like any of the DH images I have seen online - there is no blistering, and no redness (until I scratch), and I'm wondering if it could still be DH.

Is it worth getting a biopsy? I have a call into my derm to see if DH is something she is familiar with and if she would do a biopsy for me but I won't hear back from anyone in her office until tomorrow.


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pricklypear1971 Community Regular

Per some of my previous posts/threads I am having trouble getting a formal Celiac diagnosis. A quick rundown: negative blood panel, negative pathology report from biopsy but doctor did see visual flattening of the mucosa during endoscopy....and obviously I have many many symptoms.

But one of my other severely irritating symptoms is intense skin itching. I have 5 or 6 places on my body that itch all day long and get way worse in the evening. In some of those places I have little patches of slightly darkened skin. The patches sorta look like dry skin but they are the itchiest spots on my body. They look NOTHING like any of the DH images I have seen online - there is no blistering, and no redness (until I scratch), and I'm wondering if it could still be DH.

Is it worth getting a biopsy? I have a call into my derm to see if DH is something she is familiar with and if she would do a biopsy for me but I won't hear back from anyone in her office until tomorrow.

There are other posters here with itchy spits, though I don't know about brown spots. I think there's a link with detox (gluten) and kidney or liver issues (detox). I itched like that for a few weeks. Was quite scary given the DH.

Do a search for itching and see what you turn up on the forum.

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      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
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    • 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. 
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