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Dermatitis Herpetiformis

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After suffering for many years with severe intestinal problems, this summer my husband discovered information on celiac disease. It sounded exactly like what I'd been going through, but I wasn't ready to commit to a gluten-free diet. A short time later I went to my doctor because the lymph nodes on the right side of my groin were swollen huge and in horrible pain. She discovered a rash at the base of my tailbone and told me I had herpes! I told her it wasn't possible and she told me I must have gotten it from a toilet seat and sent me home with info. I went home and read the info (which said you can't get it from a toilet seat - duh!) I started taking the anti-viral meds she gave me and the next day the rash started itching so bad I thought I'd lose my mind. It went on for about 10 days despite taking the meds. Two weeks after I went to the doctor I got my test results back - negative. No other information. I decided to look into celiac disease further and read about dermititis herpetiformis which means "a skin condition that looks like herpes." That is what finally convinced me I had celiac disease. (Besides the fact that by then I was so weak I could barely lift my head from the pillow.) I've been on a gluten-free diet since then (that was in June) and have not had another episode since then and I'm regaining my strength and my health. At this point I've chosen not to have a biopsy so I'm treating it myself.

Interestingly, my grandmother went to the doctor recently for a horribly itchy rash "down there" and the doctor told her she had herpes! She freaked out! Of course her test came back negative too but I haven't been able to convince her to try a gluten-free diet. Has anyone else had the horribly embarrassing experience of being told you had herpes when it was really dh? :unsure: ( I had to come home and tell that to my husband. . . !)


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My daughter is 18 and she was told she had vaginal herpes. She had blood tests and they came back that is wasn't herpes. It may have been the cold sore type. I wonder is this was DH. She was diagnosed with Celiac disease 2 years ago. she ahd the biopsy and it was really positive. Man these dr. need to get with the program. She was really up set and we couldn't umderstand how she could have got this. Do you think it could be DH. DOWN THERE. She hasn't had anymore problems. She did take the herpes med and it cleared up. It is so weird. IT was really awful for her too. this is really interesting. Can you have DH as well as the intestinal part too?


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    • are your new negative results with or without a gluten challenge? i think its irresponsible for your doctors to dismiss positive bloodwork. i agree that positive blood results points towards at least potential celiac disease and there is a good chance that there either wasn't enough damage yet or they missed it. pretty sure high Gliadin IgG means you were having an immune response to gluten. ttg IgG is less specific/sensitive than Iga but nonetheless it is an antibody related to tissue damage in the small bowel.
      seems common for GIs to deem celiac blood work as unreliable and then glaze over the fact that biopsy results can also be unreliable.
      if you have/are doing a gluten challenge i would ask for an EMA bloodtest and DGP not just ttg. if not maybe get the genetic test?    
    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
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