Does anyone else have a baby intolerant to gluten?

[Pudding]

I have an 11month old who reacts to gluten with a rash and eczema. Unable to tolerate oats and millet as well. Is this likely to be a general gluten intolerance or coeliac disease? We are getting little professional help!

[Feedingmyintolerantchild]

Hi, my little boy is now 3 and first showed signs of gluten intolerance, at the least, around his first birthday - alongside a very obvious and severe reaction to all dairy. We have been through hell and still not got a firm diagnosis. We have seen two paediatricians and were discharged by both. They just sent us off to dietitians and advised us to cut all wheat, dairy and gluten containing products out of his diet for a year.

He tested negative at his Coeliac blood test, but I was told that can happen if the person has not eaten enough gluten containing products in the run up to the test. My son Zac, had been through all sorts of elimination testing with the dietitians and had been gluten free for a while for a period before we put it back in for the test.

Also, he was so ill in the run up to the test that he wasn't eating much of anything, so it was little wonder the test came back negative. In fact he was in hospital at the end of the three weeks as his body couldn't take much more! He had a fever of over 40 and was unconscious and covered in an unidentified rash! Even I could see that just meant his immune system was fighting something!

We have been through years of 'self testing' and food diaries and it was me who ended up working out all of his triggers and me who cleaned up his diet to the point where is now well and thriving.

That is part of the problem, because he looks so well, they don't think we should 'challenge' him, as it will make him ill. But that doesn't help us as we don't really know what we are dealing with. He has never had any scans or the gut biospy, yet reacts so badly to so many foods you would think they would do whatever they can to identify his triggers and perhaps work out a treatment plan.

No-one is bothered enough to go for the gut biopsy to rule out or in Coeliac disease. They seem happy to write it off as severe wheat and gluten intolerance and advised us to avoid them. It makes me so mad, he could actually have something else wrong with him, but no-one is interested in checking.

Most recently he has started to develop eczema and asthma. I was told he is simply 'atopic', but I firmly believe there has to be a reason for this. As he was so young when all these things developed, it cannot be attributed to a poor diet. We were only a few months into weaning and he had never had any junk food or processed food by that point.

Anyway, I got so mad and have had to work so hard at managing his health and diet that I have become something of an expert. One doctor even asked me if I was medical because I seemed so well informed. Well what caring mother isn't driven by the health and wellbeing of her baby/toddler/young son? It sounds like you are going through a similar thing and might find my blog interesting. I have recently started it to help people going through this. I have recipes, information, food and restaurant reviews, general hints and tips on how to deal with this. And there is more about 'our story'.

You can find it at feedingmyintolerantchild.com

I hope you find it interesting and helpful.

Just one final thought, dairy might also be an issue. I have learned that skin is often aggravated by dairy, so this might be another one to test. I hope your little one is not dairy too, as that is extremely hard work when you have a gluten free diet to manage too. But I have recipes and hints and tips on both and am happy for you to contact me anytime.

Best wishes.

Nicola

[Pudding in reply to Feedingmyintolerantchild]

HI nicola,

Thank you so much for your reply - really helpful and good to know someone else had had similar issues as i have.

I have spent the past 9 months battling this with little help.

Since my baby was 8 wks old she has had bad eczema with sandpaper like skin all over - no creams worked to resolve the problem. At 4 months old she began getting a rash on her face and body as i breastfed her (all doctors said there was no food link). I then tried her with a tiny amount of formula and she came out in hives. Following this i cut all dairy from my diet as i was still feeding her and surprisingly within 2 days her skin was silky smooth! The problem with the angry rash during feeding remained and got to the point where she was avoiding feeding from me because of the pain. As a result i cut out gluten (without any guidance) and again surprisingly after 2 days the rash reduced massively. However there was still something causing her a problem (Oh - she also had a worsening of eczema if she ate baby rice) and i was guessing it could be rice that i ate but i didnt know that she was still reacting to. Paediatrician just dismissed things as i turned up to an appt with a healthy baby who had no skin probs but she failed to listen to me in that she was only looking well as i had cut out 2 major food groups and without dietetic support! Sooooo frustrating. I also had a baby that continued to be severely itchy all day and night and i was up every hour with her due to the discomfort. The paediatrician just fobbed me off with an antihistamine (symptomatic control is all they are interested in!).

We ended up going privately and she was skin prick tested for wheat, cows milk, corn, cat dander, and something else i cant remember - but they all came back negative which i was surprised about. The private dr put me on a stone age diet (bit like paleo diet) and this worked in that after about 1 month i had a baby who was happy, healthy and developing really quickly (her development has been v.much slowed down as she has spent the first 6 months of her life screaming in pain and discomfort). I then had to stay on this diet whilst i began introducing different foods directly in to my baby's diet to see what she reacts to. So I have found that oats, millet, tomatoes (slight intolerance to and only reacts to them if her body is currently reacting to another food), rice and dairy are the problem foods at the moment. But - we havent introduced many other foods yet apart from all fruit, veg and lentils. She keeps vomiting after eating meat at the moment but my GP reassures me that it'ss unlikely to be an intolerance as she was eating meat a couple of months ago ok. I am now though so reluctant to even try her with corn, wheat and any other gluten products as im definite if she reacts with oats and millet that are possibly just contaminated with gluten then she is likely to react to foods like wheat - and i dont want to put her through unnecessary discomfort trying them. However, paediatrician said she wouldnt consider doing anything else until ive tried her with all foods.

So sorry for the very long message(!) but im sure you can sympathise with the frustration and isolation felt going through this process when you are so desperate to do anything for your baby. I will have a look at your blog and thank you so much for replying.

Sarah