How Gluten Free Should I Be?

[Mern27]

I have had symptoms of food allergies for a few years. I was diagnosed with IBS about 5 years ago and everything has just gotten worse. Mostly gastrointestinal...blood in stool, constipation and diarrhea, passing lots of mucous and abdominal pain, nausea, bloating, etc. I have been getting very itchy skin, hair loss, severe anemia, headaches, joint and muscle pain, severe night sweats and low grade fever. I had my stool tested for parasites, my blood cultured and tested for a wide range of things including food allergies and celiac. I was shocked that all except for my iron came back fine. I know that dairy bothers me but my doctor has suggested that I stay off gluten as well. She is scheduling a scope and biopsy but I wont be able to get in for it for at least 4 months. My question is, if this sounds like celiac or gluten intolerance, how bad do I need to avoid it until I am diagnosed? As of today, I am not consuming anything that has gluten in it, but what about cross contamination? Do I need to take it that far for now? Both my daughters have moderate milk protein allergies but still suffer from symptoms so I am concerned that they have what I am being tested for. My 6 year old showed negative to celiac blood work twice. Should we all be eating gluten free or wait for a diagnosis? I have heard that some people never have a positive test but gluten free makes all the improvement.

[OptimisticMom42]

Gluten free is all or nothing. Going gluten free before your testing will cause a negative result. The testing is unreliable anyway so the only way to know if gluten is a problem for you is to go 100% gluten free for a period of time(not sure how long) and then bring it back into your diet. If like the rest of us you get so sick you swear you will never do that to yourself again.....You have celiacs. Many of us didn't need to "bring it back in". We reacted so strongly to accidental glutenings we swore it off then.

Hope you are feeling better soon,

OptimisticMom42

[Crayons574]

When you are on a gluten free diet, it is 100% or 0%, because even a little gluten can do a lot of harm if you have celiacs. If you are getting your biopsy though, it won't do you any good to go gluten free until afterwards, because otherwise, your results will show up negative. So, if you are for sure doing the biopsy, I would wait to go gluten free afterwards. Feel better!