This is also somewhat helpful, but it leaves me with just some vague model of gluten causes the intestine to take up more stuff it normally wouldn’t and that extra stuff crossing the blood barrier somehow causes problems. Maybe there’s not more precision available in a model I can easily understand without learning a bunch of biochemistry, but I really wish I had something that would allow me to make more precise predictions about things like:
How much gluten can I eat without risk of issue? Is it none? is it 10% of what I would normally eat?
How long do we expect the effects of gluten last on the body?
What things would make the situation better/worse if eaten with gluten?
This is probably one of those dumb, obvious questions but I’ll ask anyway. Have you consulted with a Gastroenterologist yet? If not, you might want to consider consulting w/one to help interpreting the biochemistry stuff for a more precise “scientific/medical” simulacrum of the underlying pathophysiology from from the clinical standpoint. Otherwise I think you’re best bet is probably working with your Dietitian and the various Gluten Intolerance groups online for more practical advice on dealing with it in the day-to-day world. Unfortunately, from my own clinical experience, there’s a lot of the “art of medicine” involved in phenomenologically interpreting/applying medical research findings clinically.
Yep, and several other specialist. We ruled out everything else, which left me with a vague diagnosis of nonspecific, as-yet idiopathic food sensitivity.
Ugh! I’m just realizing you haven’t even been told if Gluten-intolerance is the underlying etiology which is understandable frustrating...apologies. I looked closer at some other NCBI articles and we really don’t have a good understanding of gluten intolerance other than it appears related to some underlying autoimmune disorder. That leaves you 1) experimenting with eliminating gluten, which it sounds like you‘re already working on, to see if there’s any correlation with gluten intake at all; and 2) getting tested for the various biomarkers folks have suggested below.
There is a recent discussion article I read in the NEJM on “An Allergic Basis for Abdominal Pain” discussing some recent research on Allergies and IBS you may or may not find useful. https://www.nejm.org/doi/full/10.1056/NEJMcibr2104146?rss=searchAndBrowse Let me know you want to read it but can’t access it and I’ll be happy to email you a copy of my pdf.
Another thought is if your specialists have mentioned small intestine bacterial overgrowth (SIBO)? I’ve had vague IBS issues that had worsened over the past year that we’d been working on without any resolution. A physician friend suggested I try a nutritional supplement called Atrantil which my GI doc said was worth trying since nothing else was working. Short story is it helped which led to trying a course of xifaxin/neomycin for SIBO that I’ve had good results with. Problematic is that diagnosing SIBO isn’t really good and is trial/error of trying various antibiotics.
For the types of gluten problems (or wheat allergy, which often looks like a gluten problem) actually supported by science (and not just ?maybe it’s bad?) You need to go to 0 initially to let your system recover. After that, mild allergy or celiac could allow for the occasional wheat maltodextrin ingredient or “cooked in the same kitchen as active flour usage” or “ok, just one bite of that” or “I’ll just scrape the filling out of the pie.” Severe allergy or celiac requires continued zero tolerance.
At no point would eating a gluten roll or sandwich be reasonable.
Regardless, the standard diagnostic method for “I seem to have GI problems” is to remove all the things from your diet that have caused other people problems (wheat, milk, etc.) And then reintroduce them one at a time and observe your reactions. Your gut bacteria are unique to you, and you might have or lack something that makes gluten or some other protein contraindicated.
If you haven’t looked at Wikipedia yet, their entry covers the etiological basics. https://en.wikipedia.org/wiki/Gluten-related_disorders
I also saw this article that might give you some more in-depth understandings of its underlying etiology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182669/
Hope those help…❄️
This is also somewhat helpful, but it leaves me with just some vague model of gluten causes the intestine to take up more stuff it normally wouldn’t and that extra stuff crossing the blood barrier somehow causes problems. Maybe there’s not more precision available in a model I can easily understand without learning a bunch of biochemistry, but I really wish I had something that would allow me to make more precise predictions about things like:
How much gluten can I eat without risk of issue? Is it none? is it 10% of what I would normally eat?
How long do we expect the effects of gluten last on the body?
What things would make the situation better/worse if eaten with gluten?
This is probably one of those dumb, obvious questions but I’ll ask anyway. Have you consulted with a Gastroenterologist yet? If not, you might want to consider consulting w/one to help interpreting the biochemistry stuff for a more precise “scientific/medical” simulacrum of the underlying pathophysiology from from the clinical standpoint. Otherwise I think you’re best bet is probably working with your Dietitian and the various Gluten Intolerance groups online for more practical advice on dealing with it in the day-to-day world. Unfortunately, from my own clinical experience, there’s a lot of the “art of medicine” involved in phenomenologically interpreting/applying medical research findings clinically.
Yep, and several other specialist. We ruled out everything else, which left me with a vague diagnosis of nonspecific, as-yet idiopathic food sensitivity.
Ugh! I’m just realizing you haven’t even been told if Gluten-intolerance is the underlying etiology which is understandable frustrating...apologies. I looked closer at some other NCBI articles and we really don’t have a good understanding of gluten intolerance other than it appears related to some underlying autoimmune disorder. That leaves you 1) experimenting with eliminating gluten, which it sounds like you‘re already working on, to see if there’s any correlation with gluten intake at all; and 2) getting tested for the various biomarkers folks have suggested below.
There is a recent discussion article I read in the NEJM on “An Allergic Basis for Abdominal Pain” discussing some recent research on Allergies and IBS you may or may not find useful. https://www.nejm.org/doi/full/10.1056/NEJMcibr2104146?rss=searchAndBrowse Let me know you want to read it but can’t access it and I’ll be happy to email you a copy of my pdf.
Another thought is if your specialists have mentioned small intestine bacterial overgrowth (SIBO)? I’ve had vague IBS issues that had worsened over the past year that we’d been working on without any resolution. A physician friend suggested I try a nutritional supplement called Atrantil which my GI doc said was worth trying since nothing else was working. Short story is it helped which led to trying a course of xifaxin/neomycin for SIBO that I’ve had good results with. Problematic is that diagnosing SIBO isn’t really good and is trial/error of trying various antibiotics.
Please excuse typos & autocorrect strangeness
Thanks for your reply!
No one mentioned the idea of SIBO, and doesn’t sound like it would really match my symptoms, but something I’ll keep in mind.
For the types of gluten problems (or wheat allergy, which often looks like a gluten problem) actually supported by science (and not just ?maybe it’s bad?) You need to go to 0 initially to let your system recover. After that, mild allergy or celiac could allow for the occasional wheat maltodextrin ingredient or “cooked in the same kitchen as active flour usage” or “ok, just one bite of that” or “I’ll just scrape the filling out of the pie.” Severe allergy or celiac requires continued zero tolerance. At no point would eating a gluten roll or sandwich be reasonable.
Regardless, the standard diagnostic method for “I seem to have GI problems” is to remove all the things from your diet that have caused other people problems (wheat, milk, etc.) And then reintroduce them one at a time and observe your reactions. Your gut bacteria are unique to you, and you might have or lack something that makes gluten or some other protein contraindicated.