Pamela Kay

Glad this helped. There are lots of alternative breads out there, so someone has likely made some sort of paleo bread with no grain. And if you bake, experiment with some of the alternative flours to see what you can come up with.

If you commit to the gluten-free diet 100%, you may want to do a bit of research on some of the tricker aspects of getting gluten out of your diet, such as cross contamination in the home kitchen (pots and pans, cutting boards, toaster, airborne flour). Don't feel you have to do everything at once, or let this overwhelm you. I've always said that going gluten free is a process, not a moment. The reason I mention this is that, if you think you are gluten-free, but still having symptoms, you may realize that even minute amounts of gluten cause a reaction for a while.

Let me know if you have any questions. 

Pam

Waterdance, celiac disease is notoriously difficult to diagnose from symptoms alone. Symptoms of celiac disease are as varied as the people who have been diagnosed with it. AWOL has some good suggestions about the AIP diet, and I've included some food suggestions below, but I would like to give you a bit of information about how celiac disease develops that may help you understand what could be happening to you. 

Celiac disease can be triggered at any time of life by any kind of physical or mental stress. celiac disease can be latent in people for decades, then something happens to "trigger" the full-on disease. In people with latent celiac disease, their autoimmune response to gluten is constantly causing damage to the gut from the top down, but as long as the body has the energy and resources (nutrition) to repair it faster than the damage is actually happening, full blown celiac disease will remain latent. If something happens that causes a great need for those resources elsewhere (emotional stress, injury, illness, pregnancy), then the ability of the body to repair the damage is compromised, and the damage to the gut increases. The more damaged it gets, the less the gut is able to process and absorb nutrients, creating a downward cycle that is difficult to reverse. 

When the gut is damaged, it becomes permeable. This permeability allows larger molecules than normal to pass the gut barrier, and the body treats them as foreign invaders and attacks, causing an allergic reaction (the histamine response your allergist noted). Dairy is the most common food for those with celiac disease to react to, but those with celiac disease can become allergic to any food they eat a lot of. 

Each time someone with celiac disease goes off of the gluten free diet, their gut has an opportunity to repair itself, the antibodies they have developed to gluten and other foods fade, and they feel better. If gluten is reintroduced, a rebound effect happens. All those antibodies that faded are reactivated and come back stronger than ever. 

As a support group leader for those on a gluten-free diet for over 30 years, the sickest people I have seen are those who are unable to stick to the diet. Often these folks were never confirmed to have celiac disease, so they stop eating gluten for a while, then feel better, then eat it again, then feel worse than ever. When someone is diagnosed with celiac disease, they know they MUST strictly stick to the gluten-free diet for life or risk serious health consequences. No questions asked, no cheating. 

Someone like you, who has been told they don't have celiac disease, does not have this absolute requirement in mind when trying to stick to the diet. Not having that certainty makes it that much harder to stick to the diet. As was pointed out in another response, your GI doc erroneously ruled out celiac disease by saying you didn't have dermatitis herpetiformis, a variant of celiac disease that causes an itchy skin response, usually on the knees and elbows or other pressure surfaces. Unless you have actually been tested for celiac disease, you have no way of knowing based on symptoms or likelihood if you do or don't have celiac disease. The only way to accurately diagnose celiac disease at this point in time is by serum blood tests or the endoscopy, which are likely to be inaccurate at this point because you have been on and off the gluten-free diet. 

So, here are your choices.

You can continue as you are, going on an off the diet, but, if you do have celiac disease, that can result in permanent damage to your health, including developing one or more of the 80 associated autoimmune diseases. Even if you don't have celiac disease, going back on the foods that trigger a reaction sounds like it is aggravating the condition. And it sounds like this is negatively affecting your quality of life. As you are tired of pursuing a diagnosis at this time, consider trying again after a break.

You have, understandably, decided that a gluten challenge  is not for you, and I agree (besides aggravating your condition, it can trigger other autoimmune diseases, as happened with AWOL and others I have seen). You could go ahead and take the blood test without a challenge (an MD can order it) if you are currently eating some amount of gluten on a regular basis, knowing that it could result in a false negative, but that a positive result would be definitive. 

You could take a test for the genetic markers for celiac disease. If you have the celiac disease markers, that would make celiac disease much more likely (1/3 of the population has the markers, but not all who have them have celiac disease). If not, then that pretty much rules out celiac disease. It's not definitive, but it gives you more information.

Or, you can decide to commit to a gluten-free diet for life regardless of whether or not you have celiac disease. You say you are having trouble sticking to the diet long term, in part because the food does not satisfy you. One thing that may help with this is to understand that that the antibodies to some foods will eventually fade after a couple of years, as happened with AWOL. Having the goal of eventually being able to reintroduce some of the non-gluten foods you can't tolerate now may help you to stick to the diet long enough for that to happen. I have even know folks that could eventually reintroduce dairy.

Keeping a food diary as you reintroduce foods after a fast will help inform you about what is causing your gastrointestinal distress. Reintroduce foods one at a time, and slowly.

Here are some food tips. Stay away from canola (rapeseed) oil and other mustard products. Don't eat quinoa (the saponins are very irritating to the intestine). Try tapioca or cassava products. Millet is well tolerated by some sensitive folks and the flour has a nice texture. Chestnut flour is an option for some (check out Le Pain des Fleurs chestnut products). Amaranth is another flour you could try. Make sure the products you choose are specifically marked gluten-free.

I hope some of this is helpful to you, Waterdance, and that you find a way to progress to feeling well.