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Can Dh Come And Go?
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7 posts in this topic

Mydaughter often breaks out in a bumpy "rash" on the back of her neck in the hairline. This rash comes and goes. It could be absent for weeks, then suddenly appear, staying for 3 or 4 days, then disappear as suddenly as it came. The rash on her neck does itch. To me it looks more like small pus filled pimples, than little blisters. The contents appear whitish, not clear.

She also wears "Good night Pull ups" at bedtime, and also has a nasty bumpy "rash" that comes and goes on her buttocks. Again, it could appear one day, last for a few days, and then recede for a few days to weeks before reappearing. My sister suggested maybe this was a sort of heat rash, related to wearing the pull-ups and being sweaty in them, but the rash is only on her buttocks, not in the front areas at all. Daughter says the bumps on her behind hurt rather than itch.

Third symptom that has me wondering, is cracks near the corner of her mouth. I know that true "angular cheilitis" which can be related to celiac is right in the corner of the mouth where the lips meet. Daughter's crack(s) are very near the corner, but not exactly at the junction. These cracks appear more rarely than the rashes, like maybe only once every other month, but she is the only one of my children who gets them. She can feel them coming on, as she tells me when one is starting. She thinks they are cold sores, like her older sister gets, but I know they are not. They are very different from the blistering, crusting herpes cold sore my oldest daughter is prone to.

She is currently on a mainstream gluten filled diet! I hate to appear alarmist and bark up the wrong tree completely, especially when I know how difficult it is to convince physicians that celiac is real and present. If I am going to have to get into "bull dog" mode in pursuing a diagnosis, I want to have my facts straight first, so that my confidence won't be shaken by a patronizing doctor.

SOooooo do her symptoms sound like Dermatitis Herpetiformis/Celiac disease, or should I be looking elsewhere for a reason for her "rashes"?

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All I do is comment from my own experience. It does not sound like the DH I had.

richard

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When I have accidentally have gluten I get itchy on my elbows and around my knees. I will get bumps there and it will be itchy for a while and then the bumps will go away. My diet normally controls it. I don't get it as much now. Before I was diagnosed it would happen very frequently. This may not happen in everyone this was just my personal experience.

Good luck :D

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My 3 yo daughter has had a rash on her bottom that sounds similar to your child's. The Ped said it was eczema and gave her elidel (sp?) cream. My understanding is that celiac kids are also more prone to eczema. She also had a dry bumpy itchy rash all over her body (really I couldn't see it, but could feel it). The elidel did seem to help; but what I found to be most helpful was to slather her with Eucerin every night before bed. She's really improved and rarely scratches anymore. I don't know if her rash was related to her celiac disease or not.

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Hi! Your daughter's rash around the neck and hairline seem exactly like mine and my daughter's.

That is the first place I break out. If your daughter thinks about it, she may realize that she senses these coming on as well, though that area is not as sensitive. DH can come in different places on different people. Mine starts in my hairline, then my chin and ears, then shows up on my shoulders, arms, and backside. Those on my backside are tender like boils. Not sure why they feel different. I can sense the ones on my face before they ever get that light red look then break out into the pus pocket things. My daughter gets them in her hairline, but never in her ears, always on her lower legs first. She rarely gets them around her hips and rear. In both our cases, the bumps were first diagnosed as other things like eczema. It was not until the celiac disease diagnosis that it was determined to be DH.

The only way to be sure is to test them, but you can probably get a pretty good idea by keeping a food diary.

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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