Where To Go From Here?

[Neali]

Our daughter just turned 5, since she was 18 months she has been suffering from "eczema" - diagnosed as atopic, it just got worse and worse, finally since we moved from UK to Canada last winter it got unmanageable - just at this time our diet contained a lot more gluten foods (from burgers, to subs, to pastas, doughnuts, biscuits, etc...)because of our momentarily changed way of life.

I had been trying dairy free diet, but it didn't work so well...

It's after reading in a book about autism that gluten could be the cause of eczema, that I decided to try...

And it has been initially an almost miracle, because after months of totally burnt like skin on her arms, neck and red, flaky, highly stingy skin on her face it all went away/disappeared. I was really happy, although it is quite "hard" to come to realisation that our so well nurtured baby might have something like Celiac disease.

I have breastfed for as long as possible, was "very careful" during my pregnancy (but little did I know about gluten allergies/sensitivity and thought myself and my family far from celiac disease at the time), we have always been using SLS and paraben free product, and not much of it... When eczema came along it was a shock! we creamed it 3 times a day (draining!!! She always cried so much it hurted her) support about it was bad, inexistant or totally denying the problem. And also in the house, natural products only (lemon juice and vinegar)

It took a few more weeks before some other problems also improved considerably (she always had lots of wind, complained often of tummy aches and nausea, always very runny number 2s, and her tummy looked big for her size).

These were never discussed properly with our family doctor/health team, mainly because we were always stalling on other aspects of her health that were also recurring and worrying at the time - skins infections like impetigo, tonsilits (almost permanent) and for the tummy aches, it was "normal for children that age, it is only a virus, it will go, it can last from 5 to 14 days" when you go back after 14 days: "absolutely normal - it can last up to 21 days..." :-( and then if you return: "well it is probably another virus" - crazy! (the worst in all of that is I definetely they looked on the case like I was a depressive mum and obviously was imagining it all)

Combined with that, that our child is an active, healthy looking otherwise, bright and confident girl... there obviously was nothing "wrong" with her, nothing "wrong" with the way she was looked after :-(

But in retrospective, I remember at 9 months she was trying a small piece of a light pastry and she vomited it!!! Something that at the time made me think that it had poisoned her... (strange way maybe that goes to show that as a mum you know best).

As of more recently, we had found that also her behaviour at time was difficult, we were thinking maybe something like an allergy to some food colorant, sugar (although I struggled with that one, unless it would be like a diabetes kind of thing - but it never really seemed that way as no other symptoms).

So after much improvement from just a few weeks to about 1 month 1/2 on a gluten-free diet, I have reintroduced gluten... and to start with rashes reappeared after just a maximum of 2 days... after the 3rd day it was exactly like before, excruciating for us to see her like that (red imflamed skin all over her arms, and face) ("big protuding tummy")("messy number 2s").

We didn't keep it for long and went back gluten free.

Now and then, like the other night at a BBQ she has a gluten containing bun and the same evening the rash is there, as well now as all over her tummy - BUT, it is not like on the picture you find of Dermatitis Hyperformis, it is not as dark at all, on her arms it is red, inflamed, very tiny little bubbles maybe, under the skin, on her abdomen it is like really in the skin, not so red.

Overall I am so glad that she got better, but it is very difficult to make a home diagnosis, first a part of myself is fighting it, it is too hard to accept, I am trying to convince myself that it might just be "sensitivity", she might grow out of it (I have been told that so much, that I wish I could believe it).

I know that from her dad she has some North European genes, I wonder if from my side there have also been some problems I remember my gran dying of a generalized cancer aged 59 ( I was only a child and there's no one to ask for details at the moment), her gran (from husband) has/had chrone disease (which, learning about celiac disease makes me wonder if she actually might be suffering from a gluten related problem too).

I appologise for this is a bit long, and I also thought that as much details might be helpful to understand.

[Heidi S.]

A gluten free diet works for many allergies indirectly. Removing allergens from children with ADD or Autism allows their bodies to function without added irritants. Maybe the gluten free diet is eliminating allergens from her already sensitive immune system. Also gluten free diets force people to avoid alot of pre-packaged processed food, having them eat at home more, with alot of fresh fruits and veggies. Your daughter may not have gluten intolerance but the gluten free diet is eliminating another food or preservatives her body can not handle.

My suggestions (you may have already done this!):

Remove ALL fabric softeners=major irritant, number 1 seen by allergists. (re=wash all sheets, clothes, towels, stuffed animals, pillows etc.)

Remove all scented items like detergents, shampoos, lotions=fragrance large irritant.

Try to use natural cleaning products like vinegar, baking soda, etc.. to clean for a few weeks.

Try a elimination diet(boiled chicken and rice for 2 weeks then add one food type at a time).

If you can not get her to tolerate that try dairy free, egg free, gluten free, and soy free for a few weeks then introduce one at a time.

Side note, celiac or gluten intolerance is an auto-immune response responding to steroids, other allergies are histamine reactions maybe it is not DH but it could be an allergic response causing the skin problems. My egg allergy causes constant hives, rashes, etc combine with my dermatographism (very sensitive to physical touch because mast cells in my skin release histamines at the slightest touch.). My skin can not take chemicals, fragrance, or abrasion.

Hope that helps!

[cassP]

my aunt just got diagnosed with Crohns. problem is- i dont think her doc EVEN considered testing for Celiac. ya, let's just go ahead and diagnose with illnesses that require pharmaceuticals.

im trying to get her to test for Celiac- but i havent heard back ???

sounds to me like your baby DEFINITELY has a problem with gluten- you should get her to a GI to get the proper tests- and you should also know- that the tests will be inaccurate if she is on a gluten free diet. but speak to a doctor-

i had a tonsilectomy & ear infections as a toddler.

and while i dont think ive had DH... SEVERAL episodes of Psoraisis, Excema, & Dandruff have disappeared after going Gluten Free.

[cassP]

oops, ignore this, dont know how to delete

[ravenwoodglass]

Rather than having the poor thing go through hell on earth with a gluten challenge for months for blood tests and biopsy you may want to get an appointment with a dermatologist. When you see them tell them what is happening when she eats a gluten food. If before you have the appointment she has an outbreak take some good pictures of it. The little blisters you are describing are what you would see with DH. Then ask the doctor if the next time she has an outbreak if you can get right in while it is active to have them do a biopsy to look for the antibodies. Make sure the derm knows how to do the biopsy. They need to biopsy the skin next to the lesions. If she is diagnosed with DH she has a diagnosis of celiac and no further testing is needed. You do of course also have the option of simply keeping her gluten free but a diagnosis will help when she is in school as they need to keep her safe also.