Testing After Dieting?

[happybfree]

For me it's been three years already of testing and many mis-diagnoses. I always thought that with time I'd get better, but just the opposite happened. The past few months were so terrible I wasn't able to get any work done - and I love my job! The doctor/insurance process was completely draining me and getting nowhere, so I thought I'd do my own research. So about two weeks ago I googled my symptoms:

-Extreme morning nausea

-Occasional dizzy spells

-(Almost) constant fatigue

-Stomach pains - sometimes sharp sometimes just heaviness

-Occasional blood in the toilet (in large amounts)

-Headaches

-Hard time thinking (when it gets really bad)

-Extremely low imune-system

-Dramatic weight loss (15 lbs below my healthy weight)

After reading many articles and forums I thought it may be gluten. I was too desperate to get better, so I figured I'd try it even before asking my doctor. After a few days of this, I began to feel significantly better (not yet all the way). Someone referred me to a food Allergist who confirmed that I have an especially high intolerance to gluten.

Now here comes the puzzle. The Allergist said theres a high possibility that I have Celiac's - but I can only be tested for it if it's in my blood. I don't want to get sick again just for a title.

Is there a way to test for Celiac's with gluten-free blood?

Also - today I had minor morning nausea and stomach pains. It was way lighter than before I went off gluten, but I can't see where it came from. I don't even eat things that say 'may contain traces of gluten'. Unless it's from picking one leaf out of a fresh salad that had a few crackers in it. Is that possible?

If anyone can advise me - that would be greatly appreciated! Especially since I'm completely new to this whole concept!

[plumbago]

Hi,

My understanding is that you'd have to isolate your gene. And beyond that, I don't know!

Someone else could tell you, perhaps. But your question is an excellent one.

Plumbago

[ravenwoodglass]

If you have only been gluten-free for a week or two you could try getting the celiac blood panel done immediately. You could call your doctors office and see if they will call the order in to the lab or if you can pick up a slip. You do have a risk of a false negative and if you have been gluten-free for more than a couple weeks you would be better off doing a challenge before testing. There is the option of Enterolab, they can do stool and gene testing BUT they don't diagnose celiac. They simply tell you if your body is making antibodies to gluten.

You also have the option of simply remaining gluten free. Whether you are celiac or gluten intolerant you need to be just as careful of gluten.

[happybfree]

Thank you for your help

Unless I gather the huge amount of money, my insurance company's system is too slow to get me to testing soon enough. I guess I'll ask my doctor about isolating the gene. I doubt she'll be able to answer that though.

So now that I know that gluten is definitely not good for me, is there any reason to know if it's specifically Celiac's?

[ravenwoodglass]

Thank you for your help

Unless I gather the huge amount of money, my insurance company's system is too slow to get me to testing soon enough. I guess I'll ask my doctor about isolating the gene. I doubt she'll be able to answer that though.

So now that I know that gluten is definitely not good for me, is there any reason to know if it's specifically Celiac's?

Whether you are gluten intolerant or celiac the treatment is the same, the diet. Gene testing can be interesting but it can also be confusing since many doctors only test for 2 of the associated genes and there are at least 9 and some research is showing as many as 28 associated genes. If your symptoms resolve the doctor may diagnose based on your recovery on the diet. For young children and teenagers a diagnosis can be helpful as celiac is covered under the ADA and it can help to keep them safe in school and college. Some of us prefer not to be formally diagnosed because of possible insurance issues. If your doctor will run vitamin and mineral panels to check for deficiencies that can be helpful as many of us are anemic and low on other vitamins like D and B's. The choice about whether to go back on gluten until you can get your insurance company to cover further testing is up to you. However if you need to be gluten free and have been the gluten challenge can be quite painful as often our symptoms become stronger after we have been gluten free. You don't need your doctors permission to eat and live gluten free so the choice to challenge until testing is one only you can make.