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Does Anyone Of This Sound Familiar?


veryconfused

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veryconfused Newbie

Hello,

I've been reading a lot about Celiac's and I've long suffered from symptoms that really sound similar to what I read online. I know it's never good to self diagnose via the internet, but I'm without access to healthcare (no insurance) at the moment.

1) From the age of about 14-15 onward I've suffered from (this sounds gross and it is), painful lesions on my buttocks, sometimes with puss in them. And they NEVER seem to go away. Sometimes they subside for whatever reason, but they have always come back. It's long been a source of shame and embarrassment for me. Even sitting can be difficult. Sometimes the get infected and filled with puss. Like I said, totally gross.

2) Recently (I'm in my late 20's) I've been getting painful sores in my scalp, mostly in the back of my head and sometimes on the back of my neck. These suckers ITCH like crazy and often times become infected. I've got no idea what's causing them, I'm a clean person with SHORT hair. They hurt! I think maybe they are worse when I am stressed out?

3) On my face I've got what I've always have thought was acne. But I'm starting to think it is something else. It's usually around my mouth often times in the corner of my mouth, which is really painful. Recently (this has almost pushed me over the edge) I've developed what can only be described as a painful, red blistering area on the bottom/corner of my lip line/mouth. It makes me so embarrassed to interact with people. Sometimes I will wake up from a nap and have little red sores all around my lip line. Recently I felt inside of my mouth and I have an open sore. I don't remember biting my cheek or anything, I don't know where this has come from.

4) Lactose intolerance or so I think. I've long had what seems like a lactose intolerance. Whats weird is there never seems to be a pattern, sometimes it gives me the runs, other times I have nothing happen at all?

5) Small red marks on my chest and shoulders. These appear randomly. Like I said I'm a clean person, these look like zits that never come to the surface. Last week I had matching red marks underneath both of my armpits. One developed a white head filled with puss.

6) Last week I developed red sores in almost matching locations on my temples. I can't figure out what caused them. I had chicken strips covered in a batter the night before, I read that this can cause them? These are really painful and embarrassing as well. My forehead lately has been perpetually breaking out with little bumps that sometimes resemble zits, other times its just red marks that never go away.

7) In my eyebrows I get painful bumps that go and come as they please. I can't find the pattern.

Sorry for the long and drawn out post but I'm really losing a lot of my life to these ailments. They control me, they keep me from being happy and I'm really tired of it. My wife says its not that noticeable but for me, its very distracting. Does any of this ring a bell to anyone? Randomly I started using Anti Dandruff shampoo, Nazoril I think it is, on my scalp and I tried washing my bottocks with it. It seems to help? very strange.

Anyone out there.. does ANY of this ring a bell to you? Thank you for your time.


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ravenwoodglass Mentor

What you are describing sounds an awful lot like the DH that plagued me from childhood. A derm can biopsy the areas next to the sores to look for the antibodies. Do find one who is familiar with DH as if the biopsies are not done correctly and they are not looking for DH they won't find it.

You should also get a blood screening for celiac although those can come back with a false negative also. After you have finished all the testing you choose to do try the diet, and be sure to eliminate gluten from all topicals also. It can take some time for the sores to heal but heal they will if they are a gluten reaction.

You may want to add a good 'stress' vitamin with high levels of the B vitamins. The sores you are describing in the corners of your mouth could be due to a deficiency in the B vitamins.

Beccels Rookie

Im not a Dr, but it sounds to me - like your body is trying to get rid of something that it doesn't like. And its coming out through your skin.

Why don't you just try, taking gluten, wheat and dairy out of your diet or just gluten. Its hard, I know - but its not going to have a negative impact on you. If you give it a red hot go for a for 4 or 5 weeks, you might see some results.

But it really is best to try and get to a Dr, obviously.

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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. 
    • trents
      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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