My daughter has M.E.

[speedo]

Hi, I'm new to this site.

My daughter is 13yrs old and has had M.E. for nearly 3yrs now. I would love to hear from any Mums or Dads whose child has M.E. or is recovering from M.E.

Sorry to hear your news Jimjams, condolences to you and the family he left behind.

Hi to all,

Since my daughter has had M.E. we now think that she has now developed a wheat allergy. The doctors have given her some tablets to take about half an hour before she eats to try and help with the stomach cramps and sickness feeling. We try to avoid as much as possible food that contains wheat, very hard though. Going back to what Jimjams said about IAG, I'm now wondering if this could be the cause of her problems? The next time I take her to the Doctors I will ask about it. But, as I'm a bit thick! what does "casein" mean. Could someone give me some idea!

casein is the protein in milk. I wouldn't bother asking the doctors- they're a bit behind in all of this! Might be worth ringing the Autism Research Unit though as they will test the urine for you- to look for the presence of IAG. The number is in the link below. They will also know what it means in the context of ME.

The other thing you can do is buy enzymes from nutricentre (Kirkmans enzymeaid) they break down the gluten and casein in food.

HTH!

Jimjams,

Thanks for the info. I still as yet have to look on the site that you mentioned. You mentioned these enzymes, my daughter is taking a lot of "natural" medicine at the moment. Would this have any effect on them if she was to take these enzymes? She is taking natural medicine for sleeping, travel sickness, hayfever and for her joint problems.

Hi Chinchilla

You were right, it is a good site!

Hope you are feeling O.K. today?

They shouldn't do as they are only meant to be aiding the normal digestive process. I'm not sure whether they are worth trying if there isn't IAG in the urine (they're quite expensive). Paul Shattock would be able to tell you more.

Although you haven't said exactly waht she is taking, the enzymes and other remedies should be okay together. However some natural remedies can reduce the effectiveness of others

speedo - I asked my sister what else she does, and she said that one thing is that she avoids wheat! exactly what others have said here. Also foods with fast energy release: sugars, sweets, potatoes, refined flours; apparently sticking to complex carbohydrates can help reduce the swing between having energy and being completely exa=hausted.

Speedo - just wondering how you are getting on....