17 Mos Old With Rash

[MacieMay]

Hello there! I am new here! A dx friend has introduced me.

I was wondering if anyone with dx kids had a rash as an early symptom? My daughter has had a rash going on 5 months. It fits the description of DH with it's purple coloring and location (both knees, both elbows, face, hands and feet) but Derm says NO. We have been to the allergist and she skin tested negative for all the big food allergens, along with dog, dust and mold. This rash does not look like hives, and she does not have any other allergy symptoms. Her face is blotchy and red but her elbows, knees, feet and hands are raised and bumpy, not dry like eczema. Eventhough, she came back negative for the food allergies, I thought maybe food sensitivity so we started eliminating foods, first eggs, milk, all milk products, soy, all soy products and during that time the rash got worse. The only thing left and last on my list was wheat. Once I realized it could be Gluten, I begged her doctor to do a celiac panel and we went Gluten Free that day, and it's been almost 2 weeks. Her Celiac panel came back negative, which i've read is common in a 17 mos old because they haven't built up enough antibodies. I think her skin looks better, it's not great but I think it is starting to heal and it does not appear to be getting worse. Has anyone experienced anything like this? I'd appreciate any help!! Thanks!!

[cassP]

all i can say is don't give up on future celiac panels (with wheat challenge) or just living the gluten-free diet-> because Gluten & Wheat Germ Agglutin can cause all kinds of skin problems! it doesnt even have to be DH. (not that i know at all what your son has- or if your doc should have done a skin biopsy?)

- when i would go back to eating wheat in the past--> i always got something- ive had everything but DH: Severe Excema & Psoriasis, hives, fungal infections, and dandruff.

just remember - a mother's instinct is usually more spot on than a doctor's

[MacieMay]

Thank you so much for your feedback! : )

I'm hoping to get some additonal feedback from some Moms who have seen this Gluten Rash I've been reading about. Maybe I should post on another forum?

[weluvgators]

We have experience with rashes that seem rooted in gluten exposure, although they do not sound exactly like what you are working with. We also have experience with going gluten free and not having knowledgeable doctors to work with.

We went gluten free for one of our children because it was quite obvious that it needed to be done. The pediatrician and pediatric dentist working with us at the time simply had no idea that the inability for our baby to tolerate any gluten exposure was such a serious issue.

We have had to do some additional consultations and medical evaluations recently because we have been dealing with chronic health issues since our oldest started in school (her first time in a long term shared environment since going gluten free three years prior). The pediatric dermatologist that we consulted (referred to by a pedi GI and allergist that both work with celiacs) said that these skin issues are very hard to figure out. She said that a definitive diagnosis is very difficult to achieve right now and that she is finding gluten to be a common cause of idiopathic skin issues - creating very different skin problems in different people. She also shared that the experiences that her patients are sharing with her about gluten reflects something entirely different than what they were taught in medical school.

Hope it helps!

[MacieMay]

Thank for the insight and sharing your experience. I had a feeling that these rashes present differently. We've seen 4 doctors and my husband is an RN and they just shrug their shoulders. We just got our appointment for her scope. I think we will have answers and dx after that. UGH... I hate the thought of giving her Gluten for two more weeks. : (

[AllergyQ]

I have celiac and also work in Dermatology. I was wondering if your Dermatology office has what we call Grand Rounds? Dermatologist from near and far get together to look at special cases, meaning cases in which they can not figure out a diagnoses. The dermatologist's will get together and see the patient then they get together and try to discuss and try to figure out a proper diagnoses.

Some doctors might have more experience with somethings than other doctors do.

I highly recommend you find a Dermatologist office who does this, usually they do it at hospital offices. If you can not find an office that does this in your area, i

suggest a second diagnoses from a different Dermatology office.

It took me forever to get the right diagnoses for my Graves disease, i can't count

how many times i went to the e.r. thinking i was having a heart attack at 20 years old. I was actually having palpitations, the doctors told me to use a laxative. Then when i started having symptoms of Celiac it took four years to finally get an appt with GI and right away my doctor did a blood test followed by a biopsy. After four years of being lactose free and still having symptoms, they finally sent me to a GI doctor. I even went to the E.R. with severe stomache cramps and got a diagnoses of a burst cyst on my ovary, i knew that was a misdiagnoses, i just did not know what was wrong.

So sometimes you have to keep trying till the doctor gets it right. I know that is a terrible way to look at it, but it is very true. I wish you luck and i hope that your child is not suffering too badly from this rash. Good Luck!