Is It Worth Getting Tested For The Official Diagnosis

[lynne1978]

Please help...

I have always had digestional problems, since I can remember, and I have always felt 'ill'. I used to get so upset and think that noone should feel that ill constantly unless was something drastically wrong with them.

I have had blood tests done for everything imaginable, and the tests for coeliacs always come back negative. I have tried wheat free a few times and felt so much better it was unreal, and then started to eat it again, gradually feling worse and worse every time with severe stomach cramps and bed ridden for at least a day.

My symptoms:

Stomach cramping 30 mins after eating bread/cake/etc

hard swollen very distended painful stomach

itchy skin (no rash, but so itchy) on knees, behind ears, back of thighs

excema on face and in hair/ behind ears

extreme headaches

foggy brain

no concentration

I went completely gluten free a few weeks ago, feeling on top of the world, started gradually eating normally again, and went to the doctor with hard swollen stomach, (who tested me for pregnancy... ) and he referred me to a specialist. They took bloods and I am going to have a gastroscopy and possibly biopsy and have been told to eat at least 2-3 slices of bread a day in order to test. I have been eating for 5 days now, had to leave work today as so ill, and spent the afternoon in bed.

Is it worth getting the tests done for an absolute diagnosis, can the doctor diagnose on just the challenge tests? what are the chances of a positive biopsy if i stop eating it now? Anyone else feel like this, and if they have chosen to not get the tests, what do you tell people if you do not have the official verdict? (family wont beleive things unless told properly by a doctor..)

I'd really appreciate other peoples opinions on this and any advice/suggestions for coping with this!!!

[brendygirl]

Keep it up, you can do it!

Think of it this way, which might you regret: getting tested or not getting tested?

I doubt you would regret getting tested.

It's rough, though. I know.

My doctor took me off gluten for months then had me eat some for a week and did the blood test, which was "inconclusive". I had elevated levels of that igA or whatever it is but not enough for a firm diagnosis. I said, what else would cause the levels to be elevated? He said nothing else.

Grrr...

ALSO: Now I can pre-tax the cost differential between gluten free foods and regular foods by enrolling in a 125 plan at work. So, I NEED my doctor (a new one) to write a letter saying I require gluten free food.

An "official" dx can help with that for you, if you can do it, too. Food is expensive!