Desperate for help/advice on babies wheat/dairy/soya/egg/pet allergy!!!!is he coeliac???

[kerrypank1708]

Hi I just wanted to see if anybody has any advice for me as this week my 5mo son was diagnosed with wheat allergy (level 6-highest) cows milk (level 5) soya (level 3) and pet level 4.i have no wheat intolerance but his dad is having blood tests next week for coeliac disease (just to rule it out-doesn't have many symptoms tbh) but I am waiting for follow up appointment from immunologist for my son to see where we go next and I'm just at my wits end not knowing what is wrong with him and how he could react if in contact with wheat.we knew something was wrong as he was on anti reflux aptamil and gradually his skin got worse and worse to the point that he looked like he had burns on his face and is now on neocate LCP formula on prescription.but he has had no contact with wheat in his life so how can he have this massive allergy???is this likely to be coeliac disease???anybody with any advice help or been in a similiar situation I would really appreciate any words or input you have for me.thanks in advance

I can't add much in terms of advice, but my 11 year old has been diagnosed with a wheat allergy this year and appreciate how difficult it must be for you. Such a lot of issues for such a little chap. It sounds like you need to get straight back in to see the Immunologist to answer your questions, including will he be tested for coeliac? (Important). Don't rest until you have an appointment date- I'm a health worker and sadly don't fully trust appointment systems. Also need to see a Paediatric Dietician to advise you on diet in the short term. We are seeing one for the first time tomorrow. A good Health Visitor and GP really need to support you in navigating the system. Have you tried the coeliac society? They have a good website and should be able to provide really professional advice. Really good luck and hope others with more experience of this also post:)

I can really relate to your post kerry. My DD was diagnosed with severe milk and egg allergies and lesser allergies to wheat, soy, peanut and treenut at 6 months and went straight on to neocate. The severity and number of allergies came as a complete shock (no family history of food allergies) and I felt lost initially as it took a while to get the support we needed.

Here's my advice:

• Be pushy with appointments as outnumbered said. It waited a long time at first for appointments to come through that never materilised, I've since learnt to follow up quickly if I can't secure an appointment date when I'm there in person. We are lucky enough to have a local allergy nurse, something that wasn't mentioned until I was in tears on the phone to the hospital a week after they'd given me DDs results over the phone and told me someone would be in touch - no one was. The allergy nurse was a great source of advice and much more avaialble than the consultant.

• Get referred to a dietician. Ours was a great source of help for ensuring a DDs restricted diet was sufficiently balanced.

• Focus on what your LO can eat rather than what he can't. With 6 allergens to avoid I felt down about the number of foods that were shut off to my DD until someone pointed out there's far more she can eat than can't eat. Once you're familar with alternative products it gets much easier. I'd also recommend allergy recipe books, the Intolerant Gourmet is my personal favourite.

To answer your question about having a massive allergy to something you've never had contact with, I think that's the weird world of allergy. DD went into anaphylactic shock after having an ounce of infant formula, I was trying to make the switch to mix feeding having EBFed for 6 months. That was the first time she'd had dairy apart from anything I passed on when BFing. She'd never ever had egg, soy, wheat or nuts but was allergic. In our case I suspect it's genetic, my dad has asthma, DH has hay fever and his mum had ezcema - a hatrick of atopic diseases which are related to food allergy.

How was your DS diagosed? Was it through blood tests? DD has those at 6 months and I found them so distressing. I think they are less reliable than skin pricks, our local hospital doesn't have the facilities to offer skin prick tests so we go to St Mary's Hospital in London for allergy tests. DD is nearly 2 now and is no longer allergic to wheat or soy - I don't know but I think that was an unreliable skin prick result as her allergy level showed v low to those. She's recently passed food challenges for baked egg, peanut and hazlenut and amazingly can now have butter despite being severly allergic to other forms of dairy.

I hope you find the support you need and that allergy list reduces in time x Apologies for the epic post

Wow thank u that is so helpful.iv been ringing the hospital every day to chase his appointments,as my mother in law says the squeaky wheel gets the oil :-) that is good to know that your dd grew out of allergies too I was worried especially with wheat been so high that he may never grow out of it.this was a blood test he had done rather than skin pricks.hopefully after going under the immunologist he may provide better testing for him.and I will definitely look for that book and see if I can track down a local allergy nurse
Thanks so much for your advice xxxx

Hi there. If your son has never had any gluten (e.g. if he is still exclusively milk fed) then he can't have coeliac disease (yet, anyway). Coeliac disease is an autoimmune response to gluten in the body - the immune system produces antibodies to attack the gluten, which actually attack the body itself (that's the "auto" bit). Wheat on the body (e.g. in a cream etc.) won't cause a coeliac symptoms - it has to get into the digestive tract. Also, if you are BF, it doesn't matter if you eat wheat (or barley or rye or oats), there won't be any gluten in your breastmilk. It's different from an allergy.

That of course doesn't mean that he isn't predisposed to coeliac disease (by carrying the relevant genes) or won't develop it later. If your DP (his father) is diagnosed as coeliac, then it's important to make sure your son is tested when at an appropriate age, as that significantly increases the risk.