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Dh Question For My Mom


julie5914

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julie5914 Contributor

Hi guys,

My mom has diabetes T1, and I have celiac. She has had a celiac blood test, but she was told it was negative (it was really more inconclusive). She's always had these itchy spots esp. on her shins and hands and forearms which she attributed to wheat a long time ago because they were less itchy when she avoided it. She would still have some every now and then though and stay "under the radar." However, lately it has come in full force and she says it's hard for her to live in her skin.

She itches and breaks the skin almost immediately, going deep down and getting large sores that take a while to heal. She says it's like her bones itch. I asked if they were blisters. She said she itches so much and so fast that they are sores more than blisters but start out as kind of pin-pricks, like small blisters maybe. She went to a care clinic out of town it was so bad and they loaded her up on strong anti-biotic to fight staph and other infection. Can you tell me if this is similar to what you have and if we can be 99% it is in fact DH?

I am worried about her because I don't want her to think it is just gluten-caused because of me if it is really something else that needs a different treatment. She went to the doc again when she was back in town and has a lot of medicine and told them she thinks it's wheat, but no one biopsied. I've encouraged her to do this, but she says if she gets off all gluten again and it goes away that will be confirmation enough for her.


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ravenwoodglass Mentor
Hi guys,

My mom has diabetes T1, and I have celiac. She has had a celiac blood test, but she was told it was negative (it was really more inconclusive). She's always had these itchy spots esp. on her shins and hands and forearms which she attributed to wheat a long time ago because they were less itchy when she avoided it. She would still have some every now and then though and stay "under the radar." However, lately it has come in full force and she says it's hard for her to live in her skin.

She itches and breaks the skin almost immediately, going deep down and getting large sores that take a while to heal. She says it's like her bones itch. I asked if they were blisters. She said she itches so much and so fast that they are sores more than blisters but start out as kind of pin-pricks, like small blisters maybe. She went to a care clinic out of town it was so bad and they loaded her up on strong anti-biotic to fight staph and other infection. Can you tell me if this is similar to what you have and if we can be 99% it is in fact DH?

I am worried about her because I don't want her to think it is just gluten-caused because of me if it is really something else that needs a different treatment. She went to the doc again when she was back in town and has a lot of medicine and told them she thinks it's wheat, but no one biopsied. I've encouraged her to do this, but she says if she gets off all gluten again and it goes away that will be confirmation enough for her.

This sounds like what I had for years. It was misdiagnosed as poison ivy but the doctors could never tell us why I still had it with snow on the ground. The only thing that would clear it up was a month or so on very strong steroids and it would return within another months time. For me this was gluten, clearly gluten. As someone who suffered for years because blood work for celiac was negative and the diet was never mentioned I would IMHO tend to agree with her. If the gluten free diet does away with this problem then she should stay gluten-free. Blood testing result accuracy can vary even within a family. It wasn't until after I was finnally diagnosed that they blood tested both my children and they both showed positive. Unfortunately they were not tested until both had permanent damage. Also celiac is very common with diabetics but unfortunately our doctors often choose to ignore the possibility.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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