Should I Wait?

[Shashi]

I haven't been diagnosed yet, and have an appointment for Feb. 1 to see my G.I. doctor because my PCP ran a blood test for Celiac and something in the test came back borderline deficient.

I've had a lot of neurological symptoms for years (paresthesia, nerve pain, muscle and bone pain, ataxia, slurred speech, difficulty swallowing, tremors, simple partial seizures, etc.) which my doctors thought was MS, even though the four T2 hyper-intense foci on my MRIs are not in the right place for MS lesions. Just within the last few months, I've started losing weight without trying and have had nausea, vomiting, and diarrhea off and on for over a month now. I also feel almost constantly hungry, in spite of having just eaten. I also have the most astonishing array of abdominal gurglings I've ever heard!

My problem is, I don't know how much longer I can handle this nausea, vomiting, and diarrhea. I'm still eating gluten, because I know that if I stop before I'm diagnosed, it might skew the test results. But I don't know how much longer I can go on like this. If it is gluten making me feel this way, I want to stop eating it so I can feel better. It's still 11 days until my appointment. What would you do? Stop now or wait to be diagnosed?

[justjen]

I would call your GI doctor and ask if you can stop gluten or if they need you to wait.

Mine told me I have to wait untill I'm seen next week but I can understand their need for me to do so!

I hope you can get some relief soon. I know how you feel and its not fun

[ravenwoodglass]

I haven't been diagnosed yet, and have an appointment for Feb. 1 to see my G.I. doctor because my PCP ran a blood test for Celiac and something in the test came back borderline deficient.

I've had a lot of neurological symptoms for years (paresthesia, nerve pain, muscle and bone pain, ataxia, slurred speech, difficulty swallowing, tremors, simple partial seizures, etc.) which my doctors thought was MS, even though the four T2 hyper-intense foci on my MRIs are not in the right place for MS lesions. Just within the last few months, I've started losing weight without trying and have had nausea, vomiting, and diarrhea off and on for over a month now. I also feel almost constantly hungry, in spite of having just eaten. I also have the most astonishing array of abdominal gurglings I've ever heard!

My problem is, I don't know how much longer I can handle this nausea, vomiting, and diarrhea. I'm still eating gluten, because I know that if I stop before I'm diagnosed, it might skew the test results. But I don't know how much longer I can go on like this. If it is gluten making me feel this way, I want to stop eating it so I can feel better. It's still 11 days until my appointment. What would you do? Stop now or wait to be diagnosed?

Gosh I wish neuros were more celaic savvy in this country. Mine thought I had MS also. If you can accept that you need to be strictly gluten free even if the GI tests are negative then go ahead and stop the gluten. If you really need for the GI doctor to have the best chance of saying 'yes you had positive biopsies' then stay on it for the next week and a half.

In some countries your lesions would be diagnostic but unfortunately doctors don't seem to realize that here. I would have been diagnosed years before I was if they had.

After you are done with the testing you choose to do then start on the diet. Be very strict and be patient. My gut symptoms went away pretty quickly but it took me about six months for the ataxia to go away but it may happen sooner for you.

Hang in there and I hope you are feeling better soon.