Questioning Ceoliac

My little lady always seams to have something going on, She needs a break!!!!

Over the last two months my girl has been questioned for liver problems and pre-leukemia (thankfully all cleared her first blood test came back with scary results - further investigation found no serious issues) but she was diagnosed with Post Viral Fatigue (same as chronic fatigue).
Then today we had an appointment with her Paediatrician and now he is questioning ceoliac's.

I have been looking into it and I do seam to think he may be right. She has some of the symptoms - she has always been a tired kid (and now she has the PVF), goes between constipation and large poo's, She went through a patch of unexplainable vomitting (which stopped when we removed gluten as part of a low chem diet - but hasn't returned when gluten was reintroduced), she is very underweight and hasn't gained any weight over all for 18 mths and she is almost 16 and has not hit puberty yet. She also has an allergy to dairy which from what I read is common with a gluten allergy.

I am thinking as I write this I need to get the test done sooner rather then latter.

Any tips for starting out with ceoliac?

Hi SJL,

My mum is coeliac, she was diagnosed about 16 years ago, before coeliac was well known. It took her a couple of years to get a diagnosis! The initial test for coeliac is a blood test which looks for antibodies to gluten. If this is positive, a bowel biopsy is usually performed to confirm.

It is far easier to be coeliac today than it was a decade ago! There are many gluten free products available (bread, pasta, biscuits...) and most restaurants and cafes are aware of coeliac disease and are able to advise if a meal is suitable. These days, many menus actually indicate which dishes are gluten free. Food labels often indicate if a product is gluten free, which saves from having to read every ingredient label!

At this time, coeliac disease is a lifelong condition requiring the sufferer to commit to a gluten free diet for EVER! Research is being done to search for a cure and hopefully this will be achieved in the next decade or so! If your daughter does have coeliac she will quickly find a huge improvement in her general well being by following a gluten free diet. it is important not to cut out gluten prior to the blood test as she must eat the gluten to produce the antibodies (which will show that she does have coeliac!).

Coeliac disease is very manageable and at 16 your daughter would quickly learn what foods contain gluten. If you have any questions, I would be happy to try to answer them for you!

Hi SJL - Sorry your poor DD has had such a tough time. :hug:

I have Coeliac Disease and as Nickle said, it is important not to cut gluten out of her diet until after all the testing is done. Usually the blood test will be the first thing they will look at, but really a biopsy is the only definitive way of diagnosing Coeliac. (I actually tested negative in the bloods but a definite positive in the biopsy). Yes, dairy intollerance is more common in people with Coeliac. As is the chance of developing other auto immune diseases such as Type 1 diabetes and Thyroid problems. It may not happen - just something to watch out for. I developed type 1 diabetes last year after being diagnosed with Coeliac for two years.

Eating a strict gluten free diet is the only option and it can be hard. Everything I buy I have to check. Things like meal bases, sauces, vegemite, vinegar etc all can have hidden gluten. Eating out is becoming easier but I find some outlets don't understand the inportance of preparing in a gluten free area with gluten free utensils. Even cooking GF bread in a toaster can pose problems with cross contamination from gluten containing bread.

A great resource is the Coeliac Society. If your DD does have Coeliac, she can join and they have a great magazine and other resources such as an ingredient book which lists common ingredients and if they are GF or not, specials and details of meet ups.
There are alot more foods out there and they have improved even over the last few years.

Being 16, it could be hard for her to make the switch. I know that I miss normal bread, but I also know how sick I feel after I eat it and would much prefer not to feel that way!! :-)

Good luck and if you have any questions, please ask away.

Thanks Nickle,
We are at the stage of getting a blood test done, which the doctor initially said no urgency but after reading everything I have from (coeliac society website) I am thinking might need to get onto it sooner and if they do need to do a biopsy it will need to be done under full anestetic (she has multiple disabilities and will not stay still for anything) and she is due for some dental surgery in the coming months so will fit in with out needing extra procedures.

She did have some unexplainable vomiting today whilst at the RCH about 5 minutes after leaving the doctor.

As much as it may cause problems I will be making sure we maintain her gluten intake until it is confirmed.

Thank you (I dont know if I am making much sense at the moment - I am very tired)

Good luck SJL. I hope that you get some answers soon.

Thanks Bluesky.

I know we will need to use different cooking equipment to ensure no cross contamination (and since it is just the two of us then it wont be hard at home because I don't eat a lot of bread or pasta etc). But I have heard of people talking about gluten being 'sticky' so even if things have been washed they may have gluten. Does that mean if it is confirmed I would need to have all new/never touched gluten utensils etc?

Hi SJL, I would only consider replacing porous items such as wooden spoons. Metal or plastic items which have been properly washed should be fine. You may find that it is easier for you to eat gluten free as well if your daughter is confirmed as coeliac - we eat a lot of gluten free at home simply because we have a lot of it in the cupboard to suit mum! Particularly sauces, stock, corn flour, gravy mix... all those things you keep in the cupboard and use regularly when cooking. My mum is an extremely sensitive coeliac and we have never had a problem with cross contamination at home, you will soon adjust and it will become second nature to keep 'gluten real' (as my kids call it!) separate from gluten free.

I think it would be a good idea to do get the blood test done as soon as you can... so that you can have an answer one way or another. You sound (understandably!) very stressed, I hope that you are taking care of yourself.:hug:

Thanks again Nickle.
Shouldn't have too much to worry about kitchen preperation wise.

I don't think I am too stressed about it although I do want answers. My daughter has CP, autistic tendencies and an intellectual disability so she is non verbal, it can be very distressing watching her cry for no apparent reason - usually ends in vomiting or dioarha.

Should be getting the blood test done next thursday when we are back in RCH for another appointment.

I hope you get some answers soon, SJL! Hopefully an adjustment in your DD's diet will result in her being more comfortable and suffering less V & D.:)

So the blood test says no to ceoliacs, I guess we are back to square one???? what is casuing these symptoms? what is stopping her gaining weight?? she is still growing (5 cm in 12 months) but no weight gain???

I have been to the dietician this morning and we are going to make a few changes to her diet including adding a vitamin supplement, more protein and folate specific supplement (and more sunlight for Vit D). The plan is to follow that for 3-4 months and retest everything. Then remove the supplements but leave the foods and see how her body copes.

If she has surgery then they will do the biopsy to test for ceoliac (regardless of the blood results) With any luck her body will sort it self out.

Sjl