Different gluten sources causing different symptoms?

[RedPandi]

Hey! for some background I grew up with stomach issues that my parents/emergency room assumed were gallbladder attacks but were never diagnosed or taken seriously. I learned to live with it and wait it out when the pains would come. That lasted until I turned about 22 and then it calmed down for about 4 years. I tried cutting out a lot of carbs and as a result, went gluten-free for a few months experimentally but had some pasta in the house and decided to eat it to get rid of it and started having sleeping issues which resolved into an ongoing battle for the last year with gluten. Now, a small cross-contamination (even from some seasonings) results in a week of pain and other symptoms. A full-blown glutening can last 3 weeks before the pain itself subsides. I made the mistake of going gluten-free before getting diagnosed and am now re-introducing it for the 6+ weeks to try and get diagnosed and am noticing different symptoms from different foods and wanted to know if anyone else experiences these? So far I'm reacting to gluten and oats. I got the genetic blood test and have 1 of the 2 markers and I have a cousin that is diagnosed Celiac but won't know for sure until I get tested soon.

 

For example, today is day 1 and I had a 15-grain whole wheat bread sandwich, full gluten pasta, and tried the "Donut shop Cinnamon Toast Crunch Coffee" (if I'm gonna suffer might as well make it worth it right? lol). My "typical" symptoms when I get glutened are a sharp pain in my upper left abdomen (which typically outlasts my other symptoms and gets worse the more I move around and try to do things), in my back on the same side, nausea, gas (burpy), fatigue, weakness, dizziness, brain fog, and diarrhea. After I had the bread today I experienced the pain primarily through my back, but my "gluten spot" (what I call the spot that hurts in the front since it doesn't move around and only bothers me when I have gluten) in the front is extremely tender to the touch without being as painful, as well as a new symptom of my whole body both feeling like it was 3 times heavier than normal and all of my muscles even my fingers felt like I was recovering from muscle burn out at the gym or something. Like the pains you experience when you haven't exercised in a while and go to the gym and go too hard and wake up stiff and in pain the next day but it was everything fingers, arms, back, legs, etc as well as some joint pain in my wrists. I was able to sleep off the worst of that so far today but it wasn't on my typical list of symptoms. I've also noticed I have my typical symptoms but usually a lesser form if I accidentally eat oats except they make me fart instead of burp (sorry if it's TMI). So my big question is has anyone else noticed differences in reactions based on the type of gluten or source of the gluten they consume? Has anyone else felt the weird body pain one? Thank you in advance!

 

P.S. Has anyone had any success with pain treatment? My doctor gave me something for muscle spasms they usually give to people with IBS but I haven't tried it yet, waiting for the pain to get up there first.

[trents]

Welcome to the forum, @RedPandi!

I don't know that I'd make too much out of the variation in your reaction to different gluten-containing foods. It could be due to many things including the amount of gluten in different sources, how full or empty your gut is at the time of consumption, the buffering effects of other ingredients on the rate of digestion/absorption and variations in your metabolism at the specific time of consumption. Also, there are different strains of wheat which seem to make a significant difference in how people react to the gluten in foods they are used in. For instance, on this forum we have gotten more than a few anecdotal reports of celiacs traveling to foreign countries and finding they are able to eat items in those countries made from wheat without issue. And more than a few report they can eat sour dough wheat bread without problems.

But I do want to make sure you are following the most recent protocols for the gluten challenge since older protocols are still out there on the web and also being propagated by some medical professionals. The current protocols call for the daily consumption of 10g of gluten or more for at least two weeks before getting tested. 10g is about the amount found in 4-6 slices of bread. To be safe, I would go for 4 weeks. You don't want to waste the torture experience.

[Wheatwacked]

Why do you want to eat wheat?

[cristiana]

4 hours ago, Wheatwacked said:

Why do you want to eat wheat?

I think it's a gluten trial?

[RedPandi]

10 hours ago, Wheatwacked said:

Why do you want to eat wheat?

I have to in order to get diagnosed. Since I went gluten-free before getting seen for it I don't have enough of the antibodies and stuff for it to show up in my tests if it is celiac and not non-celiac sensitivity to something so I need to build it back up!

[RedPandi]

12 hours ago, trents said:

Welcome to the forum, @RedPandi!

I don't know that I'd make too much out of the variation in your reaction to different gluten-containing foods. It could be due to many things including the amount of gluten in different sources, how full or empty your gut is at the time of consumption, the buffering effects of other ingredients on the rate of digestion/absorption and variations in your metabolism at the specific time of consumption. Also, there are different strains of wheat which seem to make a significant difference in how people react to the gluten in foods they are used in. For instance, on this forum we have gotten more than a few anecdotal reports of celiacs traveling to foreign countries and finding they are able to eat items in those countries made from wheat without issue. And more than a few report they can eat sour dough wheat bread without problems.

But I do want to make sure you are following the most recent protocols for the gluten challenge since older protocols are still out there on the web and also being propagated by some medical professionals. The current protocols call for the daily consumption of 10g of gluten or more for at least two weeks before getting tested. 10g is about the amount found in 4-6 slices of bread. To be safe, I would go for 4 weeks. You don't want to waste the torture experience.

Thank you for this! My gastroenterologist asked for 4 pieces of whole wheat bread worth for 6+weeks but I have an appointment for 5 weeks. Hopefully I can get some answers!

[trents]

I think 5 weeks should be sufficient but it probably doesn't matter if it's whole wheat or white as long as it's bread made from wheat flour.

[Scott Adams]

5 hours ago, RedPandi said:

I have to in order to get diagnosed. Since I went gluten-free before getting seen for it I don't have enough of the antibodies and stuff for it to show up in my tests if it is celiac and not non-celiac sensitivity to something so I need to build it back up!

While I understand wanting a formal diagnosis, it sounds like you will likely remain gluten-free either way, even if you should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS). Keep in mind that there are also drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. 

Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis.