What's Next?

[FlyGirl]

Just the facts:

I have experienced odd digestive issues since early childhood. Severe belly aches followed by vomiting. By my teens this faded to just regular bad belly aches, poor bowel function, and problems with fatigue & 'crashes'.

Elimination diet 2 years ago identified multiple food allergies/sensitivities/intollerances. Dairy & soy were the main culprits. No documented reaction to wheat at that time. Elimination of dairy & soy improved general health dramatically. However, still had occational belly aches, headaches, and spells of inexplicable fatique.

GI Dr. on reviewing the issues decided to test me for Celiac sent me for the IgX blood tests. Results were negative.

Current retest elimination diet is positive for wheat. Belly ache, headache, stuffy nose.

Additional general symptoms: numbness in feet, muscle cramping which improves with min 1500 mg of Ca per day.

Somewhat less factual:

My mother has had a problem of a blistering rash for the last 9 years. It looks exactly like pictures of the skin condition associated with Celiac, HD. She is currently diagnosed with Pemphigus.

What next? Do I:

-- Push for more Celiac tests? What is the advantage of having an actual diagnosis?

-- Just start a gluten free diet and see how it goes?

Advice, please.

[Nancym]

I diagnosed myself based on dietary trial and using Enterolab.com. It isn't an "official" diagnosis, but I'm a big girl and don't really need one to change my diet.

[lizard00]

Welcome to the Forum!!!!

You will find that a lot of us are self diagnosed for one reason or another. I had inconclusive blood tests, but a positive response to the diet. So, I am gluten-free and consider myself a Celiac. And, as is discussed often, until the current criteria is changed, many of us will never have an official diagnosis.

You said you did an elimination diet. Where you gluten-free when you had your test for Celiac? And if so, how long? Those things can play a part in whether your tests were accurate. Unfortunately, many DRs do not fully understand how Celiac works or how the blood tests work. To hope for an accurate result, you must be consuming gluten at the time of testing.

But my personal advice is that if you feel better and don't care about having an official diagnosis, go gluten-free and stay gluten-free.