Both my boys have coeliac disease

[itsonlyyearfour]

My DS2 had problems with his bowels for a year or so and finally at age 4 I have pushed and battled for a test for coeliac (after googling!!!) and it has come back positive - we are still waiting for the endoscopy to be performed though. My attention then immediately turned to my 5 year old DS1 who is pale, very skinny and often complains of tummy aches. I bought a Biocard homekit test and it came back positive too last night. I did this as the doctor would not test him as she thought that my DS2 was just "unlucky" and there is no (known) family history of celiac in our families.

I feel absolutely devastated and I can't get my head around it. I feel like I have let them down somehow, that I have done something wrong. I also have 2 daughters but they seem fine, although I will have to keep an eye out for them too, as my youngest DD is only 2.

I am just here really to hope for some support and comfort that my two boys will be fine and that they will be able to lead a healthy, normal life. Sorry for sounding so negative, I think I am just a little shell shocked.

Hello itsonlyyearfour. You have every right to feel negative and shell shocked, it's a lot to take in when your children are diagnosed with something like this but please don't blame yourself. Your GP sounds like an idiot (sorry) because NICE guidelines clearly state that if a child is diagnosed with coeliac disease ALL siblings and both parents should also be tested as you are 10 times more likely to have it if a close relative does. You therefore need to get yourself, your partner and your daughters tested, even if you and they are showing no symptoms (wave the NICE guidelines at the GP if necessary). Have you seen a consultant yet? I would be extremely surprised if a consultant wouldn't suggest testing siblings.
My DD was diagnosed a year ago at age 9.5. Until the age of 9 she had no symptoms whatsoever and was in fact the healthiest child you could wish to meet. She suddenly developed severe unexplained tummy pains and I was totally shell shocked when a routine blood test showed positive for coeliac disease as it wasn't something that had been mentioned by any of the health professionals and I certainly hadn't considered it. DD herself was also devastated - her favourite foods are bread & cakes! However, she adapted to the gluten free diet incredibly well and she's now healthy and happy again. I would recommend joining Coeliac UK as they offer brilliant advice and support. You should also make sure you have an appointment with a paediatric dietician and regular follow ups with both the consultant and dietician. I know it all seems overwhelming right now but believe me you will get used to it and it really isn't that bad. My DS (age 4.5) has life threatening multiple food allergies so dealing with coeliac disease is a walk in the park compared to that!
Good luck and let us know how you get on.

Thankyou so much freefrom for the invaluable advice. I have printed out the NICE Advice and will be having words with my GP this afternoon. I will demand that the whole family gets tested, seen as incidentally, my DH also has a thyroid autoimmune disease and apparently there is a link between that and coeliac...I have also joined Coeliac uk and that database is going to be a lifesaver once we will be implementing the Coeliac diet for the boys.

I am sorry to hear about your son, it must be very tough. I will let you know how I get on with my numerous battles with the medical profession on this matter, it is sad that I have had to self-diagnose both my boys so far :(

You have not doen anything wrong. It is an inherited condition triggered by environmental (ie Western wheat based diet) factors.

I am having my children tested for coeliac at the moment as I have an atypical gluten intolerance/sensitivity that produces severe symptoms similar to coeliac. I have interstitial cystitis and arthritis as well as some mild skin and neurological conditions as a result. These are all know autoimmune conditions linked to coeliac like your DH has.

The NICE guidelines are very good and your GP must get you in front of a proper coeliac consultant not just someone who is a gastro general consultant. Your children will need a gut biopsy and so probably will you and your husband. I wnt for 20 years trying to persuade doctors to take me serioulsy while my health got worse and worse. I have now got a wonderful consultant.

Don't dispair. I have lived on a gluten and lactofree diet for 3 years after suffering 20 years of poor health and feel very well now. I find that home cooking good food including GF cakes, bread and biscuits means my whole family don't mind eating what I eat. In fact they don't notice and neither do our guests.

Children and teenagers sometimes rebel against a gluten free diet because they want to eat lik etheir friends so they need lots of support. They will be very ill if they don't go on a GF diet though.

Good luck and do insist on seeing a coeliac consultant. The Coeliac UK website has a list of them.

Hi, my daughter (12) is coeliac. She had a positive blood test after symptoms at about 6yo and an endoscopy a couple of weeks ago. (it doesnt usually take that long, it was our choice) It is a big shock initially, and you do feel guilty, like you are at fault somehow, and incredibly sorry for your poor child, but seriously, it isnt the end of the world. It does involve some small changes, but otherwise has little effect, IMO. And once they get onto a GF diet, (and you must wait until after any tests needed) they perk up very quickly.
My advice is to cook everything from scratch, and learn which things to substitute in your favourite recipes. (Polenta makes a good coating for fish fingers or chicken nuggets, which can then be shallow/deep fried, we all fight over those!)
Register with Glutafin, who are the company that provide a lot of the free prescription foods, they are fab. DD was sent a selection of sample foods in a nice 'hamper' which made her day, and the sent her regular mailshots and samples, including some lovely recipe cards.
The only issues she really has, are parties and eating out. Unfortunately, you cant make other parents provide GF food at parties, it really just depends on their individual characters, and restaurants are the same really, but with experience, you will know what to look for on a menu. (Mcdonalds are actually very useful for outings, their food is very uniformly made, and their paper tray liners have a full nutritional breakdown on the reverse, including salt, dairy, nut and gluten. I always find that if I take a gluten free bap with me, they will pop their burger inside happily)
My whole family eat GF now, and rarely notice the difference. There is obviously non GF bread available, but most other stuff is no different or even sometimes better. This will also help you to avoid cross contamination, which, if someone is very sensitive, can be an issue.

Please dont beat yourself up over this though. In a very short time, you will have your head round this, and it will be such a small part of life that you will barely notice! Before DD was diagnosed,she was so poorly, I seriously thought she had leukaemia or something equally as horrible. Just think how much worse THAT would be. When I remember how worried I was, I thank my lucky stars that she only has coeliac disease!
Please, feel free to PM me if you need to talk some more, Im happy to help. xx

P.S. Dr Shah at GOSH is a lovely consultant.

Hi, my dd has last week and today had breath tests for lactose and fructose intolerance. She is def. lactose intolerant, but the fructose results although positive were inconclusive apparently? Doctor also suggested coeliac disease more likely? I haven't read up about it and don't know anything at all, don't understand why the fructose results were inconclusive but lactose not (seemed about the same to me?)

anyway, just rambling really, as i saw your post and it's very topical atm. Hope you manage to get yur other dc tested and hope you manage to manage their conditions. good luck. sorry you got unhelpful gp

Ernest - the gut damage that coelaic causes leads to secondary lactose intolerance that means there is insufficient lactase enzyme available to break down the lactose which is the naturally occuring sugar in milk and other dairy products.

This is why your GP suggested coeliac as a posisbility. Fructose intolerance is a different condition with different causes.

I drink lactofree milk otherwise within a few hours my bowel swells up with hydrogen gas because bacteria feed off and breakdown the lactose and I then get diarrhea. The breath test detects the hydrogen being produced.

Ernest - slight correction. I just read that people with lactose intiolerance and fructose intolerance may indicate coeliac.

However, some people who are coeliac are not lactose or fructose intolerant and some people are just lactose intolerant.

thanks all for your kind words and support.

I feel a lot better. Interestingly, thanks to MoreBeta's suggestion, I have found a lot of articles about the genetic link between thyroid autoimmune disease and celiac and it kind of makes more sense now that the boys must have had a predisposition inherited from their dad.....

My husband spoke to the doctor again today and we will all get tested after Easter, I am pretty sure I don't have it but you never know.....

Thanks again I was overwhelmed but the positive responses and suggestions, I will get back to this thread soon.

Both my boys also have coeliac - one diagnosed at 5 (now almost 9) and the other (who was absolutely symptomless so we left it - couldn't possibly have it when he is on the 97%ile for height!) diagnosed a year later when he was 10 (now almost 13). Freefrommum always gives good advice on these threads - mine are both thriving, DH does not have coeliac, since arriving in the US last May and eating more wheat products, I felt terrible so have also been gluten free since September last year. I also have auto immune thyroid disease, my eldest has the whole range of allergies - autoimmune, IgE mediated, oral allergy syndrome and EE so lots of other things to contend with. But both are happy, healthy, the kids here at school love their home baked cookies and cakes and are always begging to share! Birthday parties are a pain and I have got less creative as they get older - thinking they can have a treat when they get home! My eldest went away to a remote island in Malaysia on school camp last year, easy peasy, sent pasta, bread, cereal and cakes - they also cooked for him, no problems at all. I reckon coeliacs have the best diet because it is really healthy.

You'll be fine and its easy to cook gf for everyone!

HTH

Welcome to the club! Don't beat yourself up , as others have said, it's hereditary and the jury is still out at the moment on whether you can prevent a high risk baby developing it (i heard there were trials giving wheat protein to the infant siblings of coeliacs...).

Self-diagnosis seems to be a common 'symptom' too