Benefits Of Diagnosis?

[Amybunny27]

Hi everyone,

I started having symptoms in January of this year, I am 28. Pain and cramping in lower right abdomen, constipation interspersed with 3-5 bowel movements a day, itching legs but no real rash, gas, gloating and occasional diarrhea. I have always been easily fatigued, and anemic.

Blood tests came back with nothing although I did not specifically insist on a full celiac panel and am not sure what was done. After worsening symptoms I had a colonoscopy and was diagnosed with IBS. I discussed with my GI doctor the possibility of celiac's and he simply said that if cutting out gluten helps, to cut it out.

I have been pretty diligent with not eating gluten for about two weeks. I have been I'll still once or twice but can tie those events to gluten that I ate.

My question is, is there a benefit to getting a solid diagnosis? Or can I simply go gluten-free and see how I feel in three months?

Thanks all.

[Cara in Boston]

Both my son and I tested positive (blood) for celiac. That alone was not enough for an actual diagnosis. For my son, age 6, I really wanted to continue with the testing so that if he has it, I have the doctor's support for things like school, summer camp, college dorm, etc. He may need "proof" of his condition in order to get special services.

Also, there are a host of other autoimmune conditions that go along with celiac that your doctor would need to be on the lookout for in the future. I feel better knowing that it is all there in his medical record so even if we change doctors or move to a new state, it will be clear.

His endoscopy came back positive.

Mine was negative (but I had already started a gluten-free diet so this was no surprise) and I was told to return to a regular diet for three months and then be tested again. As soon as I found out my son was positive, I stopped and went back to gluten-free. As an adult, I don't feel I need any further testing. If gluten-free works for me, I'll continue it.

The only drawback for me is that if I had continued and been found to have celiac disease, I would have then been referred to other services (nutrition, etc.) that I'm not sure I'll have access to if I do this on my own. I am hoping that my MD will diagnose me on the basis of the positive blood test and positive response to the gluten-free diet. We'll see.

I feel like it is more important for kids and teenagers to know for sure. If you are likely to be tempted to cheat, you may want to continue with the testing. A diagnosis of celiac disease is VERY motivating. You will know you cannot cheat, ever. Not knowing may make you more "flexible" when it could still be very dangerous.

DO NOT start gluten-free if you think you may want further testing.

Good luck -

Cara