my daughter has coeiac disease?

Question

she has been off gluten since march last year,but still losing weight 100% sure shes eating no gluten she a member of coeliac association all food suppliers list if there products have gluten in them my wife cooks most of her food to avoid cross contanination
she saw stomach specialist he was useless told her to go home and eat!!! she uses inhalers for ashma please help

Answer 1

By your spelling of Celiac, I'm assuming you're not from the US or Canada. If you live in Europe, gluten free doesn't necessarily mean gluten free. Look into the allowable ppm and codex regulations. I don't know the laws because I'm from the US. Some Celiacs cannot handle any gluten, even if it falls below 20 ppm. Also, are all of her personal care products gluten free (soap, shampoo, hair gel, lotion, etc.)? Does she play with Play-Doh or use art supplies? Many glues and paints contain gluten and they're relatively easy to get in your mouth accidentally. Are there any contamination issues at her school/day care/job? Does she have any relatives that may be inadvertantly feeding her gluten?

For more info on Celiac, go to www.celiac.com. There's also a very useful message board at www.glutenfreeforum.com. Good luck!

Answer 2

Get a new specialist. He should have checked her blood for the antibody - it disappears when you have been following a gluten free diet. There is a small kit that GP's can use - although I have never heard of one actually using it. But if the antibody test is negative - then you can be sure that she isn't reacting to anything. You can be sensitive to codex proteins and even to the lmalt extract they use to flavour corn flakes. Even bottled beer is said to contain gluten now - although I think that is to get extra money for so call gluten free beers - I can't see canned ot bottled beer that has been professionally filtered containing gluten. You also have to consider lactose intolerance (lactose is the sugar in milk) - the test for that is painless and easy. They will just give her lactose after a 12 hour period nil by mouth. Then she blows in to a machine like a breathilyser. It checks for hydrogen in her breath. Lactose if it's not digested - ferments in the bowel and produces hydrogen that passes over in to the blood and then the breath. If she has asthma - you have to consider allergies to other foods. Possibly even casein the protein in milk and also eggs are high on the "allergy list". Make sure she is getting enough to eat and try all the prescribable stuff on the NHS - if she gets it free. if the doctor moans about cost - complain! If he or she is incompetent either the GP or specialist - see a solicitor. Use the information from Coeliac UK. But they only advise on gluten free - if you are allergic to something else the G/F handbook is virtually useless. If her problem is just low weight - don't worry it takes a while to start gaining weight. If she isn't a normal height, that may cause concern. If she is still suffering symptoms like diarrhoea or pain - she could have complications - like pancreatitis.

Answer 3

Forget the stomach specialist, you need a nutritionist! They will tell you to keep a 'diet diary' for at least a week to see what it is your daughter is actually eating (she should fill this in herself if she's old enough, otherwise you should sit down with her while she eats and work out how much she really is swallowing). It could be, as suggested, that she has other allergies, is getting gluten from unexpected sources (oh, the myriad ways they try to slip it by us!! And it's true--GF standards vary across countries, so be wary!), or she might be avoiding foods that were giving her problems before without realizing that now they're ok.

My father was diagnosed with CD as a very small child, and now in his 50s still likes all his bread and pizza crusts VERY thin--because when he would 'cheat' with wheat products, the less the better. Since my diagnosis we've been making our own bread, so it's perfectly all right for him to eat--but old habits die hard.

How old is your daughter? If she's very young she may not be able to monitor her own intake. Friends at school may be giving her cookies, or an unconvinced auntie may think it's ok 'just this once.' Make a concerted effort to re-educate everyone in your daughter's life, and start leading her through the rules she should follow. If she's older, she may be resentful of the new diet and could be cheating willfully. I find that hard to believe though, since I noticed a difference within weeks of going off gluten, and I haven't looked back since. (Well. Maybe once or twice.)

This may sound crazy, but this is how my father copes, and it could be that your daughter's system is similar. Celiac acts in strange ways. (I didn't have ANY of the normal symptoms and all my tests were inconclusive until they looked at my DNA!) My father, born in 1952, didn't have the luxury of all the information we now have. He was fed sandwiches in his youth, and though he survived he wasn't very happy about it. He gravitated toward foods that didn't make him sick. For at least the last 30-some years he has subsisted mostly on meat, cheese, and potatoes. His diet should be making him sick and malnourished. Instead, he's quite healthy. Our doctor's theory is that his system adapted to the high intake to counter what he wasn't getting elsewhere. I don't suggest you switch your daughter over to steak for breakfast, but you can certainly up her protein portions and see if it helps.

And though you may be very careful when cooking at home, be VERY careful!! There are some people so sensitive that their bodies react to the slightest bit of contamination--and the rest of the family's food being cooked in the same room at the same time might be allowing some particles into her portions.

The weight loss is dangerous. Hie thee to a nutritionist! Triple-check all ingredients! Possibly substitute her normal snacks for things with a higher fat content, like nuts or cheese.

Answer 4

I would recommend you try some reflexoogy or accupuncture treatments. They go right to the cause of the illnes and can help clear up many symptoms, including total relief from the asthma in many cases. Sometimes asthma comes from digestive disorders, particularly in young children (don't know how old your daughter is) and these therapies are safe and can be effective for all age groups - even the very young.
They can certainly do no harm. Even if they did not clear up all the symptoms, they can help with the stress related issues of coping with the illness. A good therapist will also advise on diet.
The problem with alopathic medicine is that is tends to look only at the symptoms, which they then supress with medication but rarely looks at the whole person or where the illness is coming from.
You would be surprised at the results these therapies can give.
I hope your daughter's health improves.
All the best.

Answer 5

I am 42, and cd also. I feel for you and your family., A common hidden source of gluten is commercial meats. They are injected with "enhancers" that do not get labled, and the enhancers contain wheat, soy, corn, etc. I didnt start healing until I stopped eating meat. She may also be allergic to other foods too, or sensitive to the chemicals, dyes etc in many foods. I follow the rave diet (google it-lots of info) and only have a problem if I cheat. If she hasnt had allergy testing done, I would recommend it. I am allergic to wheat, eggs, soy and dairy God bless and good luck. By the way, my asthma symptoms have vanished since following this diet

Answer 6

My sister in law suffers from Coeliac Disease. She gets her Carbs from rice products like rice flour bread and rice pasta and also potatoes. Between you and me, I wouldn't thank you for the bread and pasta and I'm guessing that your little girl is avoiding it.

If she was subject to painful gluten attacks before she was diagnosed, she may be avoiding food as much as possible. Perhaps she should talk to a counsellor (one that deals with eating disorders) as there may be an underlying psychological cause if she's very young.

Answer 7

my friends sister his coeliac. She had the same issue when she was younger. what they found was that she required a lot more 'junk food' so to speak than what we would normally give a child without the disease. she happilly pigged out on glutten free cakes etc (along with a healthy diet of course)After a few weeks her weight slowly increased. i use gluten free flour from asda to bake with now as the cakes for some reason are lighter and tastier. i hope you get to the bottom of this soon. good luck x

Answer 8

Hi,
I suffer from a wheat allergy which is worse then coeiac disease,now i was a size 14 and now am down to a Size eight in six weeks which is crazy,and i have had no wheat,i was at the specialist this week,and i was told because am a nervous person my weight will always change,and i eat for the world but i need to eat more,as i do more exercise then i have food.
hope this helps

Answer 9

Dumb... How does your daughter have a 'guy' area now which you have on no account observed earlier at start? She perchance bushy, all females replace into bushy as some element on there 'areas' yet that doesnt count number. females choose wheather or not they wanna shop the hair.

Answer 10

my son is also a coeliac, but he also has dairy allergy, u may need to see a dietician, ask the gp 4 a referral, cross contamination can come from utensils too, my son has his own toaster. has she been diagnosed coeliac? i wouldnt leave it, i would ask for a 2nd opinion from a paediatrician, good luck