Blood Tests Were Negative...now What?

[Marleigh]

I finally got my blood test results back from the doctor. They were negative for celiac. I'm frustrated at this point. Of course, it's not that I wanted to be diagnosed, I just wanted some answers! The doctor's recommendation was to remove all dairy from my diet, and if that doesn't work, he wants to set up a consult with a gastroenterologist. The thing is, he said to remove dairy "as we discussed" last week, and we never discussed it! Our whole discussion was about celiac and multiple food allergies, and now his answer to all of it is just to remove dairy.

The thing is, I started the gluten-free diet on my own on Saturday - I've not been careful about dairy at all, just focusing on the gluten. I have had no gas, bloating, or diarrhea since then, and my insane food (carb & sugar) cravings have all but disappeared. My constipation has been worse since then, but I also have endometriosis, and this is a point in my cycle when I'm usually constipated anyway. I'm thinking of continuing with the gluten-free for at least the rest of the week, and adding more veggies and nuts and exercise to see if that helps with the constipation.

Here are the reasons I'm somewhat convinced that gluten is a problem for me: I have endo, as I mentioned, and I'm technically infertile; I had a positive skin scratch test for wheat sensitivity a year and a half ago. I'm overweight with out of control carb cravings and I feel hungry even after I've eaten too much. I have constipation mostly, alternating with diarrhea. I'm very sensitive to chemicals like MSG and nitrates in food. I have dark circles under my eyes and people have been telling me lately that I just don't look well. Prior to removing gluten 3 days ago, I dealt with gas and bloating on a daily basis, becoming severe and painful after eating certain foods. I do have problems with ice cream, but other than that, most dairy doesn't bother me too much.

So what do you think - should I keep pursuing the gluten-free diet? Should I insist on a biopsy or quit messing with the doctors and handle this myself?

[Rosewynde]

I'd say if it's working, stick to it. As for the dairy, If your problem isn't fixed by eliminating gluten then try it. I've seen plenty of people on here where bloodwork and/or biopsy showed no but they felt 100% better on the diet.

[TammyK]

If eating gluten-free makes you feel better, than do it. Do anything that makes you healthier. You are your best health advocate. Don't wait and depend on doctors or testing when you know what your body tells you. My daugter just tested negative to Celiac but when she eats gluten she has seizures and migraines. I don't need a doctor or a test to tell me that she shouldn't eat gluten when her body is clearly saying no. (Usually, I am having to convince them).

It would be more productive to eliminate all possible offenders first, eat simple for an extended time until all symptoms calm down and you feel fabulous. Then reintroduce your foods one at a time. (Make sure there is no confusion, waiting in between the foods you are challenging until symptoms are gone before you reintroduce the next food). Offenders then will rear their ugly head as you add them back into your diet. Food elimination diets take weeks. However, once you know, then you know forever.

Feeling great is the best gift we can give to ourselves. It takes resolve but keep your eyes on the prize!