How Will I Know?

[chrissy]

my children seem to be fairly symptom-free, or at least they did not have what are considered the "normal" symptoms of celiac. i am not sure how we will be able to tell how good of a job we are doing at staying gluten-free. my 10 yr old has had stomach aches over the last few years---but not bad and only periodically. she does, however, complain alot about her legs either aching or feeling numb. could this be caused by her celiac? one of my twins has been nauseated for several months and has pretty bad reflux. the other twin has pretty bad rashes and it was discovered she has esophagitis---we had no idea that she had reflux. are all these things that could be caused by celiac? since they don't get "sick" from gluten, i don't know how we will be able to tell if they accidentally get some. we are only 6 days into a gluten free diet, we are reading labels, but some things just aren't clear (like i needed to tell you that. LOL!) the doc said they would probably get gluten sometimes by accident, but we needed to make sure they don't get it on purpose.

christine

[jerseyangel]

Hi Christine--I would think that the symptoms of stomachache, nausea, achey and numb legs, and rashes, while could be caused by something else, could also be caused by the Celiac. I have those myself, so that's why I say this. You could watch and see if the gluten-free diet helps with those symptoms. Remember that not every Celiac has GI troubles. It might be that they would have developed them later on if they weren't Dx at a young age. The label reading will get easier the more you do it and are familiar with the various brands that you use. Sounds like you really have your hands full there!

[DonnaD]

" are all these things that could be caused by celiac? "

Hi Christine

YES ALL THOSE THINGS CAN BE CAUSED BY CELIAC! - My daughters main symptoms were stomach pain which started periodically, headache (which I now know to be migrane) nauseia after eating. She was also very tiny, on the 3rd centile. She could not tolerate milk, it gave her asthma. She often had odd aches and pains in her legs. After 2 courses of anitbiotics last year (I think this was her trigger) for bladder infections the stomach issues became so severe that her doctor thought she had appendics or kidney stones. Her bloods were all negative but he scoped and found a reflux (he was looking for H'pyloi and ulcers she was on ulcer meds.) and the biopsys were positive. Her consultant dx 'early coeliac d' and said we were very lucky to have caught it before she had too much damage a few years down the line. Lots of other things fell into place, mouth ulcers, sore cracked lips/corner of mouth, irritability (big time!) visual problems, lots of things we didn't know about until I found the terrific helpful people on this board. So she has now been gluten-free for approx 2 months, the change is amazing, she has grown 3cm (inch and a half) and gained 5lbs, she was in clothes for a 9 year old at age 11. She has colour in her cheeks and is so much calmer and will settle to an activity. She is sleeping a lot more too. I really hadn't realised how just how ill she was until she was better. (myself too )

When she does accidentally get 'gluted' she becomes really irritable again, fights with her sister,goes off like a rocket, slams doors the lot. She sometimes get tummy ache as soon as she eats something but not always, Also her vision goes funny and she won't read. You will learn to spot the signs in each of your children.

We started off only eating basic foods that we could check had no gluten. I have taught her to 'google' a food and find out from the company website or a celiac site that a food is OK. IF WE CAN'T CHECK IT WE DON'T EAT IT!!! I contacted companies like Cadbury, Muller, Waitrose (big UK supermarket) and they sent me long lists of food that is gluten-free. I contacted the manufacturers of gluten-free food here , Juvela, Glutafin etc and asked for their 'starter packs' which included lots of receipes, info and samples of bread, crackers, cakes, mixes. It has taken me a lot of time and effort to get this far and we both made mistakes at the start. It is hard but it does get easier.

I hope this helps,

Donna