Basic Advice For A Stressed Mum

[Marmite Lover]

To start the story and it may not be relevent she had fallen three times in six months and had a cast on her arm. From that point she complained of pain in her body all over and since then she is doubled over in pain in her tummy, I have taken her to the Emergency, she has stool samples and blood tests and the specialist keeps trying to say thats all he can do. On the last visit i said that she is only five and has fainted three times from the pain and i can not leave it not knowing. He first told us to take her off milk , now to be gluten free does that include milk? Why did he say chocolate?

Is there some other test i need to push for?

Why do they say celiac and gluten free, now the specialist has mentioned both words to me what is the difference between Celiac is that the cause of gluten? or are they two different things.

I actually phoned my local hospital to speak to a dietian and they said I sounded so stressed they want me in tomorrow as the specialist said google the food you need but do it from now for two weeks.

Any one out there please give me advice I want to do the right thing and the lady i spoke to today said that she needed a biopsy to know if she was to be gluten free but the Doc is reluctant to even do allergy tests, until i mention and he says yer may be next time i see you we should look at that.

This may not make much sence but any advice please on what to do and where to start.

[Lisa]

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Here are some answers to some of the question you have.

[lizajane]

gluten is a protein that is found in wheat, malt, barley and rye. it is part of those 4 things. so a person WITH celiac cannot EAT gluten. so a person with celiac cannot eat wheat, malt, barley or rye or anything that contains them as ingredients. gluten can be hidden in ingredients. it is not always labeled as wheat, malt, barley and rye. so it is best to use whole foods- like fruit, vegetables, natural cheese and meat (without additives, like modified food starch.) you can also look for "gluten free" on food labels, like gorilla munch cereal is labelled as "gluten free."

[mushroom]

I am so sorry your doctors are leaving you so up in the air with so many unanswered questions. This is totally unfair. Maybe you were too distressed to hear some of what they were saying; I will give you both the benefit of the doubt.

It certainly sounds like your daughter may have celiac disease. If they ran the celiac panel of blood tests and there was something positive there, this could be what the doctor was responding to. The blood test for celiac is often confirmed with a small intestine biopsy via endoscope (tube inserted through the mouth under sedation/anesthesia). This is considered to be the "gold standard" of diagnosis for celiac; if the villi are damaged that confirms the diagnosis.

Some doctors will diagnose with just the blood test, others require the biopsy confirmatiion. The reason they mention celiac and gluten free in the same breath is that if she has one she needs to be the other. The "cure" for celiac is not to eat gluten. When the villi in the small intestine are damaged you are usually unable to digest the lactose in milk (the villi are where the digestive enzyme lactase are made) so that's why they say not to drink milk. Most chocolate contains milk.

I hope this contains in a nutshell the information you were seeking.

[Marmite Lover]

Oh my goodness, thank you for all the help, as ice-cream is made with milk do I have to keep her off that too? So is it all milk products or just ones with a high contents?

Do allergy test show up any of the gluten or milk problems. After a rough night sleep i still think I will have to face the specialist and go down the biopsy route, 9 weeks of this has been enough and school call to tell me she has been resting on there bed beacuse of the pain.

[shayesmom]

Oh my goodness, thank you for all the help, as ice-cream is made with milk do I have to keep her off that too? So is it all milk products or just ones with a high contents?

Do allergy test show up any of the gluten or milk problems. After a rough night sleep i still think I will have to face the specialist and go down the biopsy route, 9 weeks of this has been enough and school call to tell me she has been resting on there bed beacuse of the pain.

Just to clarify. Gluten has nothing to do with milk. Milk allergy/intolerance is a completely different and separate issue from celiac and gluten sensitivity.

With that being said, it sounds as if your doctor may have said to keep your daughter off BOTH milk AND gluten. That means no ice cream...unless you can find one that is made without these ingredients (that is...made from rice, soy or coconut INSTEAD of milk). Sherbets are also not permitted on a milk-free diet. Sorbets are usually okay. Unfortunately, it is mandatory that you become an avid label-reader while trialing this diet. Going milk "lite" or gluten "lite" simply is a waste of time and will not give you a good baseline as to if those foods are problematic for your child. It also won't help your doctors figure this out.

When you're on a diet free of milk and gluten, that means your diet is FREE of those products. As in NONE. Not even a trace amount. When someone is allergic or sensitive to these products, even miniscule amounts can cause a lot of physical pain. With my daughter...a crumb of cookie is enough to make her sick for days. And every individual has a different threshold of how much sets off physical reactions.

Allergy tests may help find an actual allergy. But Celiac is NOT an allergy. It is an autoimmune condition. And only specific blood tests or biopsy can medically test for/diagnose it. Dietary trial is probably the most reliable way of detecting if gluten is a problem (due to false negatives in the first two testing methods and positive response to the diet). But it sounds as if you may benefit most from a formal diagnosis. And that would mean biopsy. So please, talk to your doctors and learn as much as you can about what this diet entails. If you're going to opt for biopsy, then going gluten-free right now is not an appropriate approach towards getting accurate test results.

It sounds as though you aren't getting very good information from your doctor. If possible, try to find one that is more knowlegable on the topic who will be better equipped to help you. Good luck!