This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Gastric conditions can be very hard to gauge, since severity of symptoms does not really correlate with severity of disease. a lot of GIs like to do EGDs right off the bat because they can diagnose the disease and view the damage directly, instead of trying to guess using blood work.
Blood tests aren't generally as reliable (or don't exist) for a lot of gastric conditions (ulcers/h. pylori, acid reflux, etc) but an EGD (upper endoscopy) would allow them to test for everything at once with relative certainty.
What kind of lab work have you had done, blood / stool tests, radiology?
there's plenty of "basic"(and relatively cheap) tests you could do to check for things like chronic inflammation, bleeding, etc. which would cause doctors to pay attention. Additionally those aren't things that ERs would generally check for, when you go to the emergency room they are going to look for anything that is immediate and potentially life-threatening/disabling.
Also, the upper abdominal pain could potentially be your large intestine (the tranverse colon sits right next to the duodenum and stomach) and wouldn't show anything on an EGD. Unless you -know- where the pain is because of a previous condition (for example, I had acid reflux and ulcer symptoms long before anything else), you may want to expand your consideration to include the large intestine and the rest of the small bowels.
If you haven't looked for GI bleeds and chronic inflammation, you may want to try that. Celiac damage is associated with inflammation and usually some of those markers will be present. They are considerably cheaper than an EGD (what you got already) and most doctors/insurance don't need much evidence to authorize them.
I found myself in a similar situation. I'd say that because you were "gluten light" for a while, its going to be important to really load up on gluten over time to make sure you do enough damage for them to catch. Otherwise, all that pain and suffering is going to be for naught. My GE says to load up for at least three weeks before endoscopy but most people on these forums seems to think 3 months is more appropriate, and if you've been gluten light/free for a long time, I'd say that three months is probably the wiser option
Because of the severity and chronic nature of the symptoms, celiac would both be a plausible explanation and a relatively straight-forward method of testing.
As previously mentioned, strict diet control is really the only sure-fire way of ruling in/out a gluten sensitivity or intolerance, especially if you are not on a gluten heavy diet before testing.
It would probably save you time and effort down the road (on top of worry) to do a ~2 week, carefully monitored gluten-free diet plan, rather than have this issue hanging over your head. Especially with a young child, you would likely see improvement within a few days, but you could definitely expect a lot of the more acute symptoms to improve within 2 weeks.
You could then definitely rule this condition out, and look elsewhere, or you could use the improvement you observed over those weeks to guide your next steps in either treating or diagnosing him.
If you are too unsure of the test results, and you are unable to strictly control his glucose intake for a week or two, your other option would be to go the other way and stick him on a glucose-heavy diet for 3-4 weeks. Very often a person will have to go on a glucose heavy diet to get a a diagnosis of celiac. At the end of this period you would have the options of either getting another round of blood tests (if you check the FAQs on this site they have some suggestions to make in how/where to get blood tests and which tests you should get), or you could get an upper GI, which is considered the "gold standard" for celiac diagnosis. An upper GI biopsy is -the- best test for celiac, and would additionally allow the doctor to check for a host of other conditions which could be causing these issues.
Finally, I don't know if these were included in the lab tests you have already done, but you may wish to consider testing specifically for intestinal parasites, both stool and blood tests. Children pick these up pretty easily, and the symptoms could present similarly with a failure to grow and intestinal discomfort. Intestinal parasitic infections won't necessarily show up on a standard blood test
I was in a similar situation a couple weeks ago. I had scheduled an upper endo (for biopsy) and had been off gluten a few days with only . I raised the same concerns with the staff there, and did some of my own research (I have a professional background in immunology/microbiology).
You didn't mention what sort of tests you'd be getting for your son, but the chances of a few days off wheat (assuming a lifetime on it) would affect a biopsy or antibody titer are pretty small. However, you should definitely keep him back on wheat until he gets his tests, especially if you are considering an endoscopy as a child would recover from the damage much much faster than an adult. You want to control for any variables that may contribute to a false negative.