Need Advice To Cope Until Testing Is Done......

[roxieb73]

I have the worst muscle weakness. It is a chore to even walk to my car. I had been on a gluten free diet for a couple weeks and was feeling much better. I then tested negative on the antibody test. My doctor thinks it is a false negative and has ordered me back on the gluten. I now feel worse than ever. Main problems are fatigue, headaches but the worst is the SEVERE muscle weakness. I feel like an invalid and I just don't have the strength to do anything. Any ideas on what might help until the antibody tests and biopsy is done. I am looking at another month before I can go gluten free.

[MitziG]

I wish I did! Unfortunately this is why many people on this board are self diagnosed celiacs. The gluten challenge is simply to difficult to maintain for the required time.

It is important that you remember, even doing the challenge, you will likely still test negative for celiac. Only 1 out of 133 have celiac disease. And testing will only identify 70% of them!

Non Celiac Gluten Intolerance affects as many as 1 in 14 people however, and there is no test for it, other than an obvious unpleasant response to gluten!

It seems clear that gluten is a problem for you. Do you NEED the dx? Is there a chance your dr would dx you based on your response to the gluten challenge alone? Some do, if they are enlightened.

I wish I could offer advice for getting through this, all I have is hugs though! Hugs!!!

[roxieb73]

I wish I could just go gluten free but I do need the diagnosis. I am certain several others in my family would benefit from a gluten free diet but getting them to do it will not be easy!!! I need this diagnosis to get them to listen to me. Also my son's father will not put him on a gluten free diet at his house without it. I am fairly certain and so is my doctor that both my son and I have Celiac. Now we just neet to prove it.