Possible celiac disease in DD- i'm really scared!

[Tras]

Since birth my daughter has dad lots off issues such as lactose intolerance and other food allergies. She has had reflux and has only begun to manage to eat lumps (18 months). Therefore she hasnt really eaten bread etc. Thinking back, we have given her the odd bite of a sausage when she has climbed onto our knees at tea time. Or some of the Organix range biscuits. I think these would both have gluten in them?? However she has always eaten Wheatabix every morning and appears fine with this, so no wheat allergy.

Over the past two months she has developed a chicken pox like rash over her back and crotch. It does respond to steroids but keeps coming back.

We have been patiently waiting for an appointment with the allergy clinic for months and they now say Feb.

Long story short, we had a review appointment with her consultant who asked if we had a history of celiac in our family. I of course have been on the net ever since and am totally freaking out. Of course, I know she may not have this and am doing this 'self talk' but at the same time I need to inform myself. Bloody Doctor acknowledged it didn't look like eczema but is still saying it IS eczema. I know what eczema looks like because she has it elsewhere and it runs in the family and this isn't it!

If anyone has this disease, particularly with the rash, can you let me know how you manage? Any other information or advice would be great.

I am coeliac (gluten and lactose intolerant) and my Dad is very intolerant to dairy so I supect he is too but undiagnosed.

If I eat bread my skin is very itchy sometimes but mainly my guts are very very ill.

Dont panic. It is fairly easy to resolve. Just eliminate all gluten and lactose from the diet. Getting the hang of the diet is not hard but so many things have gluten and lactose idden in them (eg sauces) that I end up cooking from scratch for most meals. You can buy gluten and lactose free foods but are expensive. You can buy Lactofree cows milk which is normal milk with lactose taken out. Taste like normal milk. Alternatively soya milk but it taste funny.

The only caveat is if your DD is going to have any tests she still needs to be eating gluten and lactose.

They haven't told me to do that. God I would dread it! She is so itchy at the minute, I would hate to make her worse. Part of me would love to be proved wrong and they would tell me there is nothing wrong with her but I just don't think we could be that lucky. From the very moment I started to wean her she appeared more irritable and started wakening every hour at night. Would just love to get the bottom of it!

Hi Tras,

I don't want to try and diagnose your daughter but I have two boys who had a blistery rash and were subsequently diagnosed with Coeliac Disease so I'm happy to answer any questions.

Can you describe the rash? There are so many rashes about. My boys had a rash a year before they were diagnosed at 3yrs and 5yrs. It was what I would describe as a raised blister rash (the blisters looked like they were full of water) and were very itchy and appeared in groups that were in a sort of wavy line.

To reassure you, if it is Coeliac Disease we manage the diet successfully and the boys are really well since going gluten free.

Hi Booner, so glad you have replied. I go between thinking it is Coeliac disease to thinking its not. The rash basically looks like chicken pox all over her back. If you didnt know she had it for the past two months then you would think it was chicken pox! At the moment the rash on her back has cleared, we used a really potent steriod for 3 days and it worked wonders. However the spots around her crotch and privates just refuse to clear and she is really itchy. I already see a few spots popping out on her back again. No raised blisters, more spots and not in a wavy line, just randomly over the back and crotch.

Im gonna be really strict about no gluten for a week or so to see if they disappear. No goodie biscuits for her! Did you have to put your boys on to gluten to have them tested and was there a history of this your family? We have never had this.

Hi Tras,

It certainly doesn't sound like the rash my two had at all. Have you looked up Molluscum Contagiosum? - there are lots of pictures online? That's a common rash in children which comes and goes. My two have had that as well! They both had spots in their groin as well as around their trunk.

My niece had already been diagnosed with Coeliac Disease two years previously to my DS2. My two were on a normal gluten containing diet and my sister told me definitely not to remove gluten until all tests had been completed.

My youngest was quite poorly when diagnosed. Other symptoms we had were pale face, dark circles under eyes, skinny arms and legs but bloated stomach, foul smelling diarrhoea and wind, tummy aches, night time waking, wanting to be carried everywhere, being irritable. My older boy was tested only because it can run in families and he tested positive though not as strongly as my youngest.

Let me know if you have any more questions.

She is pale but I think its more genetic because so am I! She has skinny arms and legs and a bloated stomach but my son had a bloated stomach as well. I think again that is just genetic. She would have constipation rather than diarrhoea and at times she has constant night time wakening. She still wakens at least once every night sometimes screaming. Also can be extremely irritable at times.

She definitely has issues but whether its Coeliac Disease is unclear. Suppose we will have to wait till the tests are done at the allergy clinic. Thanks for your help. I really appreciate it.

Ps, I don't think its Molluscum Contagiosum. I saw the pictures and hers do not look like blisters/warts. Unless you can have it without the blistering, its definitely not it.

My DS is coeliac too - he has still got a 2" patch of pink spotty skin on his knee. If he has any gluten at all it flares up. He was tall and thin with a bloated tummy but other than the dreaded D he was OK in himself.

He was an horrific sleeper till diag. now he sleeps really well

Any questions just shout.

Here en.wikipedia.org/wiki/Dermatitis_herpetiformis

Hi Tras

I have to admit to knowing nothing whatsoever about Coeliac disease but in all other senses your dd symptoms and conditions sound very similar to my dd who is 3. She had terrible reflux, CMP intolerance plus eczema and now has had multiple food and enviromental allergies and asthma. She also used to get an angry red rash around her back, bottom, collarbone area and bits on arms etc. Dr said she had chicken pox but no 'head' on spots plus although very itchy she would get it for a few days and then it would go and return some weeks later.

I would not generally describe my dd as a 'well' child as she gets everything going but what we have found is that now her allergies are diagnosed and she is on daily cetirizine she is far happier and less itchy. The rash appears far less frequently. The paed cons did test for coeliac as symptoms suggested this and we had lots of endless night waking, screaming, wind, constp, diarr, bloating etc.

I guess what I am trying to say is that there may be something else more allergy related and that sometimes kids get inexplicable rashes that drs find hard to accurately diagnose. May I ask do you have pets and has she ever been tested for environmental allergies eg dust mite, mould, animal dander etc?

Might be worth pushing for those tests if not - we ended up paying privately as the wait was too long and we were desperate.

Hope you get some answers!

Knotagin, I agree with you there. Am keeping in mind that there are so many causes of rashes. No we no pets as I have animal allergies. Multiple allergies run in the family ie eggs, animals, hay fever etc. We have also started putting down wooden floors etc. Praying our allergy tests will come through next month! Poor wee mite is getting an eye tooth through so now her eczema is breaking out on her fingers and face as well! Ah well, she could be a lot worse.

Your daughter must be eating a normal amount of gluten for the coeliac tests to be accurate. The gluten will produce antibodies in her blood - that's what the blood test will look for. When the biopsy is done they will be looking for the damage gluten causes to villi in the gut - if she is not eating gluten her gut will heal surprisingly quickly and you will get a false result.

As to coping with the coeliac diet. It really is not a problem once you get used to it. My son is coeliac - and also allergic to gluten, milk and egg. I still manage to bake all his favourite things for Christmas and birthday!

If youf DD is diagnosed then you will find a lot of help here:

members2.boardhost.com/glutenfree/

with a host of recipes for everything you can imagine saved on the supplementary board attached to it:

coeliac.info/suppboard/

If she is coeliac then after the test when she goes glutenfree she will recover remarkably quickly. Hope your DD feels better soon - whatever the result of the coeliac test.

There is a condition called dermatitis herpetiformis which is triggered by gluten, it is linked to coeliac disease but can't remember quite how sorry. If you go to coeliac uk's website they have information about it. Good news is that it can be easily diagnosed and treated with a gluten free diet, however I really would not recommend starting a gluten free diet until you have had any tests that need to be carried out, otherwise you can get false results. HTH

I am Coeliac and had an itchy widespread facial & neck rash before diagnosis. It wasn't typical DH though, more like acne/atopic or sebhorric excema. It cleared up totally after 3 weeks on the diet. Don't panic about it, once you get used to it, it isn't bad really. Batter to get diagnosed early as well as I already had bone damage (I am in my 30s) but in children, it is reversible or doesn't occur. Hope all is OK.

Constipation is also a symptom of coeliac disease. One of my boys had bad stomach cramps and diarrhoea, the other constipated and they both are coeliacs.

Good luck with diagnosis and hope you get some answers soon.