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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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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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