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Does It Have To Be An Extreme Rash?

Guest pear_fairy

By Guest pear_fairy
in Dermatitis Herpetiformis

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Guest pear_fairy
Guest pear_fairy
Posted

I have only been diagnosed as IBS so far and that was by a regular doc. Recently been seeing more and more of my symptoms taking after Crohn's or Celiac. I have gotten rashes all my life that docs always dismissed as contact dermatitis an allergic reaction etc.. The most common rashes I get are on hands and look like a bunch of clear tiny bubbles mostly on index finger but have gotten over complete palms before. Swolling and itching occurs! Most recently though I have gotten some on my forearms. They started out looking like just a couple bug bites then got white heads on them. They itch on and off. I am slowly getting several more. The only pics i have found of DH online looked quite extreme. So was wondering if anyone gets this and it varies on itching and or appearance?

I have other symptoms (no periods unless on the pill, stomach issues of course, been vomiting on and off for last couple of months this month has been three days already though and not in a row, prickling sensations in skin on legs on occasion, was haivng some anxiety and depression a few months back etc...).

Thanks for any input. I have pics also if anyone wants to see.

~Steph

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Guest LisaB
Guest LisaB
Posted

My Mom & I both get the same thing you descibe, so I wonder the same thing. We have always called them "hives" but I think actual hives are bigger, these are small and very itchy! I also get rashes frequently, or I used to, that has gotten much better since starting digestive enzymes and I hope now that I am gluten free, they are going to stay gone. :D

Guest pear_fairy
Guest pear_fairy
Posted

Thanks for the reply Lisa. Thank goodness it has been colder out (live on a tropical island right now) as I had one on upper arm that looked like a zit it was awful and husband teased me about it but now have them on my wrists. Most are tiny and can barely see them but there are a couple that have the bug bite appearnace. I also noticed they flatten out at times then others they are puffed out with or without the "head" on them ewww. It makes me so paranoid and been looking at every rash imaginable online to "diagnose" myself ha ha! We have to go to military docs and they aren't the best of the bucket for sure! Moving to England in a month so will be happy to go to real docs and from what I have gathered they are very intune with the digestive diseases.

~Steph

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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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