Should I Bother With Further Testing?

[AnnJay]

Hi everyone,

Last May I underwent the Celiac Blood panel test, with negative results on all tests (more than 3, either 5 or 6 were done). The internist at the time said regardless of the results, if I feel better by not eating gluten, then don't eat gluten. Ok, then I went out of town for a month and discovered all kinds of sources of hidden gluten in restaurants. It was horrible and I felt sick a lot.

When I came back home, I noticed that even without gluten I had symptoms. Since then ive cut soy, corn, and chocolate (dairy was already gone). So no gluten, no soy, no corn, no dairy, no chocolate....but I may need to add coconut milk as welll...have to test that. My symptoms are digestive. At their worst, the intestinal cramps wake me at night and keep me miserable all day, along with the fatigue, depression, slight nausea, and at times my temperature has fluctuated wildly. From corn, migraine, all the others it's diarrhea.

Recently I saw a gastroenterologist. The blood and stool tests (taken while healthy and controlling diet) reveal no pathogens, no blood, no inflammation, good organ function, no malabsorption, slightly high iron (not high enough to cause damage, just interesting).

Today I saw an allergist. He would like to do scratch tests for food, dyes and preservatives. But in my opinion I have intolerance reactions, not allergic reactions. The allergist told me that an endoscope is required to test for intolerances. And I would need to go back on gluten for proper results. Which means I would have to knowingly eat this poison that knocks me flat, makes me sick and tired, and basically worthless for 3 days...and do this for 6-12 WEEKS? Seriously? I really can't care for my 4 year old twins and be sick all the time. I could just go along with my diet restrictions, eat healthy, and feel healthy.

What would you do?

[mushroom]

Really, if it were me, I would just quit the gluten (and whatever else is bothering you at the moment) and be healthy. Which is actually what I did because I had never even really heard of celiac at that time. It is good that you are showing no signs of malabsorption. Did he do a full vitamin and mineral panel on you, like Vitamins D, B12, A, E, K, and check for magnesium, potassium, zinc? Gluten can cause deficiencies in all of these. And if you have low D you are at risk for osteopenia or osteoporosis.. It is wise to get all these checked out. If he ran 5 or 6 celiac tests he did run the full celiac panel. It is also recommended that you have your thyroid function tested.

Yes, to test for celiac disease (there is at the moment no test for gluten intolerance) you do have to go back on gluten for a longer period of time than most intolerants can make it through And, as you say, knowingly continue to poison yourself for that time whilst suffering all the time. And you have twins to take care of, you say? Yes, I know what I would do. Others on here have different points of view and hopefully will offer them to you.

One thing you have to be aware of is that celiac is a genetic disease and it is possible to pass it on to your children, so it would be wise to have the blood tests for them and repeat every 3-4 years, and also watch them for symptoms.

Best wishes in your decision making.