I had negative bloodwork, (they say 20-30% of us do) but severe villi flattening when scoped. I was told I had Celiac, and to not eat gluten. I went gluten-free and had some almost immediate relief of symptoms (GERD, bloating,nausea), but then realized I was getting bad reactions from soy too, then dairy, and other foods. So, to make sure my DX was correct, I was given the gene test. I had a DQ2.2, which was "equivical", meaning they couldn't rule it in or out.
I went to the Mayo Clinic for further testing and Dr. Murray there said I could be Celiac, or just severly gluten intollerant. He did a SIBO test and found I not only had high hydrogen, but methane too. He said that's indicative of SIBO, and he felt I probably had a severe case of it. He said SIBO can mimic Celiac, in that it destroys villi and makes the gut "leaky" causing particles to pass into the blood stream that shouldn't be there, which our bodies react to. He said the "bad" bacteria can give off toxins as well, giving various symptoms. We tried several different antibiotics, with no change in symptoms. He said we'd use "good" bacteria to fight off the bad.
I wasn't digesting food very well on my own, so he prescribed pancreatic enzymes and a low dose steroid that's commonly used for Chrohn's disease to quiet down my immune system. He also said to take probiotics every day, which I have done.
I'm going back to Mayo the week of May 6 for another scope and a lot of blood work, and a repeat of the SIBO test. I have been off the steroids and digestive enzymes since Nov. I am still "losing" foods due to bad reactions. Most recently eggs, and peas. They are not true food allergies, but intollerances.
Sooo..now I'm intollerant of gluten, soy, dairy, peanuts, MSG, corn flour, yeast,peas, navy beans. i've seen several Dr.s and they all say the same thing..."I'm an interesting case".
I have found that I do best on a Paleo diet. I occasionally eat rice, but no other grains. I use tapioca starch for thickening sauces, and don't eat breads or baked goods of any kind. The Paleo diet is a growing trend. There's a reason for that. Our food has become "poisoned" with chemicals, artificial sugars, and GMO corn and soy. Many people find that they feel a lot better eating a diet that is close to what our ancestors ate. It's what are bodies are designed to eat.
I hope I haven't confused you with my answer to this question? The point is...if you are having symptoms, there's a reason for it. It's not "all in your head", as some of us have been told. You can have Celiac with a negative blood test, you can have Celiac like symptoms with a severe bacterial overgrowth, You may be gluten intollerant (there's no good test for this aside from avoidance and then reintroduction to see if there's a reaction at this time), your body may be reacting to GMO foods, or the chemicals and dyes in foods, or other food intolerances.
My advice...get the scope, get the gene test (they are now finding that there are other genes involved besides DQ2 and DQ8, but it might help get a DX), go gluten-free and eat a whole foods diet consisting of plenty of veggies (organic when available), nuts and seeds, healthy fats like coconut oli (which feeds your brain, raises good cholesterol, and kills bad bacteria), grass fed/free range meats, eggs and fruits. Shop the outer perameter of the grocery store and don't eat processed foods. Take probiotics. Have your vitamin/mineral levels tested and take soy free supplements fior anything you are low on. Additionally, take krill oil or soy free fish oil, and limit sugars.
Keep a log of what you eat. A little notebook is fine. List what you eat and note any symptoms you have. If you have other intollerances going on, this is the best way to find them.
My best wishes to you in finding the answrs you need to help you get your good health back. Remember too, no matter what is giving you symptoms, it will take time for your body to heal once you remove the offending irritant.