How Should I Proceed?

[birdie22]

If you've followed any of my prior threads you'll know that I'm blood test negative (had total IGA, tTg, dgp, etc) who has had a host of symptoms (nausea, headaches, canker sores, dizzy/buzzed, bloating and distention w/ epigastric pain, crushing fatigue, heartburn (but not reflux), cystic acne, tingling in fingers on rt hand) since Nov 2010. I started pursuing causes in June 2011. After several trial elimination diets I went gluten-free for a prolonged period in Nov 2011. I did a 5 day gluten challenge in Feb and a 7 day challenge just a few weeks ago. Though my symptoms didn't go away completely prior to the challenge they did see some improvement and clear regression with the gluten challenge. I'm fairly certain gluten is the cause of my issues and happy to remain gluten-free. That brings me to my question. I have a follow up with my primary care physician tomorrow. In the almost 1 year of guessing my issue I've done just about everything but be referred to a GI. I've done CT scans and barium swallows, xrays, ultrasounds of my pelvic region, and many many blood tests.

Given my symptoms, response to diet, and neg blood should I:

1. ask for a GI referral and likely go back on gluten for an endoscopy?

2. ask for genetic testing? I have 2 daughters, both very tiny, both with sometimes bloated bellies, one with chronic constipation and canker sores (though not frequently). Gene testing could be a piece of the puzzle for me and for them? I did ask her about this previously but she dismissed it since my other blood work was negative.

or

3. thank my pcp for her work (or lack there of), call myself NCGI, and go about my merry way?

I honestly can't decide what my next best course of action is. I'm leaning towards #2 since it doesn't require my ingestion of gluten and could help give some possible answers for my daughters w/out having to subject a 2yo and 4yo to unnecessary blood tests if I don't carry known common genes (and yes I know that's not a foolproof diagnostic answer/tool).

[RiceGuy]

Well, being biased against the standard western medical industry, I'd just take the family gluten-free along with yourself, and stick with it for an extended period of time. It can require much longer than a week or two before you begin to feel appreciably better. For example, it took six months before I noticed anything aside from the one immediate symptom I had, which was unquenchable thirst after eating certain breads.

Since tests in young children are even more unreliable than for adults, it may not provide any useful information to get your children tested at this time. And, just because your tests have been negative doesn't mean you don't have Celiac. But, if a gluten-free diet proves helpful, then by all means stick with it regardless. It does sound like your children may benefit from a gluten-free diet. It cannot hurt, and may be the best thing you can do for their long-term health.

If you feel that getting an "official" diagnosis is important to you, then pursue it. Just remember to always trust what your body tells you over what tests may indicate.

Keep in mind that dairy is also often not tolerated, so you may need to avoid that at the same time. Other offenders may include soy, corn, eggs, nuts, and the other top allergens. Some folks are able to add some/all of these back into their diet after sufficient healing has taken place, while others cannot.