Gluten-free And Sooo Happy But What Now?

[staceymoonlight]

Hi there all

I seem to have a very similar story to many of you (thank goodness!!) which makes feel really welcome.

After years of stomach pain and weight loss, I have decided that wheat and/or gluten just do not agree with me and for the last 3 weeks I have been gluten free and relatively pain free. This is all great, but I have not had a blood test as when I saw my doctor, I had already started gluten free. His suggestion was to go gluten free for 2 weks and then go back on a normal diet for two weeks before having a blood test. Naturally I was sceptical and I do trust him, but the obvious results from the diet decided me firmly against going back to normal food.

Last weekend I had some rice and rye bread (4 slices to be exact, over the whole day) to see if I could tolerate rye (goodness knows why I had so much, although I was VERY hungry) BIG mistake. That night and most of the next day I had horrific stomach cramps and eventually diarrhoea (sp?) and feeling heavy and draggy all day. Am I right in thinking that this is a classic gluten reaction? And should I just do what feels right (gluten free) and not worry too much about an official diagnosis?

Please help.

Stacey

[Guest cassidy]

Sounds like you have a problem with gluten to me. There are two schools of thought on formal diagnosis. Some people feel it is necessary for them and they will go through testing to get a positive diagnosis. Other people feel their positive reaction to the diet is enough for them and they don't want to put themselves through the testing. Neither one is right or wrong, it is just what is important to you.

I'm convinced that you have a problem with gluten. If you feel better on the diet and feel bad when you cheat, that sounds like evidence to me.

My bloodwork was negative however I went gluten-free right after the blood test. By the time I got the results I felt so much better that I didn't care that it was negative. I never "tested" myself. I certainly glutened myself by accident and considered that enough proof. I needed a note for a business trip so I could have special food and my doctor had no problem writing me a note saying that I have celiac and I'm on a special diet. He was also convinced when I told him what symptoms went away on a gluten-free diet.

[nettiebeads]

I've never had a "formal" test for my celiac. I had the BIG D (gassy, foamy, float and gross smelling) for six weeks, went to my dr, was put on the gluten-free diet. Immediate relief. At the follow-up he pronounced me celiac and was sent on my way. That was 10 years ago and all the drs since haven't bothered to refute the dx because of lack of testing. I know what my body does after being glutened and that's good enough for me. You feel better off gluten, have bad physical problems when you eat it - voila celiac. I wouldn't knowingly ingest gluten now for anything. The affects are just too hard for me to handle and I so love feeling healthy.

Annette

[kabowman]

I had several nurse friends and NPs who suggested I might have a gluten problem so I tried it, by the time I got to my doc, then switched to a new PCP because he said, oh, it is all allergies, I had been gluten-free for 3 months. I told my new PCP that I was not going to go back on gluten for a dx but did have a EGD which showed no damage.

I had wanted an official dx but was not willing to back to the pain for it - so, I do NOT have an offical dx of celiac disease. That was my choice though. I have had both my boys tested, per their pediatrition who recognized and suggested the possibility himself, and they both tested negative.

I also now have one relative that has gone gluten-free, an aunt and my sister is wheat free, not gluten free, for now.