Anyone with experience of coeliac disease? Need some advice please

[suiledonne]

DD1(she will be 4 in May) is a typical atopic child - eczema from 2 months of age, diagnosed with asthma at 19 months and has an egg allergy. She suffered terribly from constipation from 18 months until last summer and was taking Movicol. We weaned her off that but she still has occasional bouts.

She has never been a strong child, poor appetite, doesn't sleep well. She was small for her age although since her asthma has been controlled she has grown a lot and is about average now. I have always had the feeling that something isn't quite right with her - she isn't thriving IYKWIM. In comparison dd2 is very strong and healthy.

For the last few weeks she has been vomiting occasionally and very irritable.

One bout of diarrhea in this time but I notice that her poo is very pale a lot of the time.

Also noticed an oily film on the water after she poos (sorry if TMI here)

I googled these symptoms and found a lot of it points to coeliac disease.

The paed told me when she had her allergy tests done she reacted slightly to wheat but not to change her diet.

Because her appetite is so poor she would not have been ingesting gluten in large quantities (struggles to eat half a slice of toast)but recently I bought Weetabix for dd2 and on thinking about what has made dd1 ill I realise she has been eating the Weetabix eevery few days.

Does it sound like coeliac disease or and I worrying too much?

Going to the GP on Monday.

Would like some thoughts on it.

Thanks.

It could well be coeliac disease and it would be worth asking for a blood test - a lot of what you describe fits the picture. The blood test (because she has not been eating huge quantities of gluten) may well come back negative (or positive but at a lower level than expected on a full gluten diet). They may decide that it is not worth doing a biopsy if she has been on a low gluten diet. You may, of course, be lucky and have a GP and paed who is willing to "treat as coeliac" on the basis of the symptom picture alone. (In fact there is now a suggestion that more people should be diagnosed on the symptom picture since even the biopsy can have a false negative as only a few samples are taken and in the early stages gut damage can be patchy.)

If she is coeliac then you will be amazed at the quick improvement you get! I hope your GP and paed are helpful and get her on the road to recovery quickly. I would be concerned about the weak positive allergy to wheat - it took me eight years to get my son diagnosed coeliac (I was considered a fussy mother!) and it was only after a very alarming allergic reaction to gluten that the blood test was done. At that stage one teaspoon of Rice Krispies (there is gluten in the barley flavouring) was enough to trigger eyes, lips, hands swelling and an extensive rash. While your daughter is being investigated I would keep Piriton handy. Hope she is much better soon.

Sorry should have added - if she is coeliac it often causes temporary lactose intolerance so that could be contributing to her symptoms as well.

My dh and mil are both coeliac. If it looks like your dd is, make sure you get a proper diagnosis from your gp before going gluten free. If she has this she will be able to get lots of food on prescription which will help quite a lot. My mil didn't get a proper diagnosis and just went gluten free. She would have to start eating gluten again to get a positive result and isn't prepared to put up with the symptoms. She would be saving a lot of money if she got prescription food.

Thanks for the replies.

flamingtoaster Can I ask what symptoms your DS had?

Thanks

The symptoms do sound very similar to the ones I suffered for years as an undiagnosed coeliac. Most people are unaware of the condition or that they have it.

One note of caution, not all coeliac is detectable by the standard tests. I did have the tests done but they all came back negative. After the tests I just did a gluten and lactose exclusion diet on my own and felt so much better instantly that I stuck with it and have been doing it for a year. I now feel very ill now even if I gave a tiny bit of gluten or lactose (e.g bread and milk) so I am even more convinced. My health has improved dramatically, I have lost nearly 2 stone in weight as I was just bloated with fluid. My skin has improved and all the symptoms you mentioned have disappeared.

I suggest you do as I did. Keep DD on her normal diet with gluten and lactose in and have the tests done. Then after the tests have been finished try her on gluten free and lactose free diet to see if she improves. Even if the tests show nothing changing her diet to exclude gluten and lactose might work wonders anyway.

When I told my consultant about my change in diet he replied that regardless of my coeliac tests coming back negative if excluding lactose and gluten worked for me then should carry on with it. I am glad I did.

Also, it is a genetic condition so others in your family, perhaps even you have it also. I have suspicions about my DS who has eczema and severe constipation.

suiledonne My DS had constant diarrhea and tummy aches if he ate more than two slices of bread a day, poo was very smelly (sorry TMI!). He also tired easily, was growing incredibly slowly, and just before diagnosis was getting very, very bad tempered. We thought he was just being a teenage but shortly after going gf he reverted to his former very sunny self! I cut his bread down to two slices of bread in his school lunch and he was better (but definitely not right). His blood test result was low (because of only two slices of bread a day for seven years) but accepted as proof. There was a delay arranging the biopsy so in the end they diagnosed on resolution of all symptoms on the glutenfree diet. (He couldn't do a gluten challenge because he was then allergic to gluten.)

When we finally saw the consultant he had two trainee doctors with him. He asked why it had taken so long to get the diagnosis and I explained I was regarded as a fussy mother by our doctor. He turned to the trainees and said, "Always listen to the mother." which made me feel a lot better!

Good luck!

Thanks, all the advice below has been really helpful and has convinced me that we must get her tested so I am going to make an appointment with her paediatrician.

It sort of makes sense that symptoms have surfaced now because since her asthma has been controlled her appetite has increased. So while she still doesn't consume huge aamounts of bread/pasta etc it is definitely more than she would have eaten before.