I'm a new member here who found the forums not long ago. I'm now 27, living in the central US. I haven't been to a CF physician for some time now, so I don't know any recent PFT info to benchmark myself with. Nor have I ever bothered to remember my mutations, though I remember having a 'rare' secondary mutation. I will update this when I have my next visit.

The intention of this thread is to discuss the effects of wheat, if any, in our diets, as CF patients. I have personally had good lung function for the portion(s) of my life during which I've lived outside urban areas, with FEVs of >140%. However, my ileus has been resected, resulting in a constriction in the resected portion of my bowel. This has plagued me with seemingly unpredictable bowel problems, including severe obstructions.

During my seventh and eighth grade years, I had regular obstructions which required lower GI work each time. I had fewer problems throughout high school, but a severe hospitalization just before graduation and another my second year of college indicated it wasn't going away.

A few years ago, a relative of mine sent me some information regarding wheat, in the form of a youtube video, which I can find and post here if anyone has interest. This video interested my enough to try some loosely scientific experiments myself; the first being to stop ingesting any wheat whatsoever for at least two weeks. Then four.

Within the four weeks, I already felt better. I hadn't had any bloating issues, and the daily heartburn that is supposedly partly caused by our enzyme supplements, and for which I have taken daily prescription antacids and would often keep me up at night, had disappeared utterly. The form of my stool changed for the better as well.

Since then, I have maintained a wheat-free diet, in general, though I continue to experiment to determine the actual culprit. I do not say 'gluten-free', because I do not believe the gluten protein to be responsible.

I have found that when I consume wheat since, I have what I would say is an over-reaction to it, as though my tolerance for a toxin had been reduced. The first symptom is heartburn within about 15-30 minutes. This is followed by nausea which continues to get worse for a time. Then bloating and excessive gas. My stool is altered to resemble a 'fuzzy stick' of sorts. (context of fuzzy-stick is fire starting; image search in that context). I also have severe abdominal pain that comes with the bloating and gas, and stays for about three days. Once that subsides, the general intestinal feelings of discontent, as well as weird stool, do not subside for about another two weeks. I have tested this numerous times...not all of them deliberate, as wheat is in everything. Being dehydrated during one of these experiments made it worse, and almost landed me in for lower GI work.

Since I have been avoiding wheat, I have not been hospitalized for bowel obstructions, nor have I had any to speak of outside of one of the aforementioned experiments.

However, I have found some interesting caveats. I am working under a soft theory that gluten is not responsible, or at least not the way it might commonly be thought, and that there may be several contribution factors, including:
Organic produced grains

It basically hinges between those two to me. GMOs have different versions of the gluten and gliadin proteins than non-GMO varieties. The effects of altered proteins I am highly wary of.

Organically produced grains are SUPPOSED to be produced without modern pesticides/herbicide. Enter glyphosate. This is the primary phosphate ingredient used to produce Monsanto's RoundUp. It is used, however, not only as a herbicide/pesticide, but also as a 'ripener'. As the grain approaches the end of the season, it is sprayed again with glyphosate, which apparently soaks into the seed heads and accelerates the time to harvest. I've read on some agricultural forums and have found farmers defending this practice, strangely. Additionally, one can search for studies on residual glyphosate levels in many common cereals.

I do not pin the blame on any one of these, necessarily, as I haven't the data. However, I have found I can eat:

Khorosan wheat, an 'ancient grain' found in Nature's Path Organic Heritage Flakes. (non-GMO and organic)
Naan bread that came out of India. (source/grain/raising unknown)
Snyder's hard sourdough pretzels did bother me, but only mildly and for about a day after a whole box. (labeled non-GMO/wheat species unknown)
I believe I've also had spelt bread that had no ill effects, but am not certain enough to make hard statements about it.

These would seem to eliminate gluten and gliadin as culprits, but I'd like more input.

Sorry for the long post. I'm sure I left stuff out. I want to know if anyone else here might be interested to try not eating wheat for a month or so and let me know if they notice anything.