Becoming tolerant to wheat, but not barley, rye

[bridgetm]

Hi all. These forums were incredibly helpful 10 years ago when I was discovering a gluten intolerance. I tested negative for celiac, but had already cut gluten from my diet 2 months prior to testing so the docs agreed to call it intolerance, plus severe reflux and IBS.

I ate strictly gluten free for about 8 years but began allowing small amounts by necessity (there were times I had no choice). When I tolerated small amounts I started experimenting with more. At this point I can handle bleached wheat flour (basic white bread when there are no other options), occasionally whole wheat, and I do best if I am eating a high amount of protein. It's a cumulative effect so if I have to "cheat" for a couple days I'll follow it with a week of clean eating. I definitely feel better eating completely gluten free and know I need to get back on that 100% but I still give in to convenience.

My question is, I know there are people who are allergic to wheat but tolerate barley and rye, then the gluten intolerant who have to avoid all three. But what about tolerance to wheat with intolerance of barley and rye? What is the immune system reacting to?

Barley and rye cause the same symptoms I originally had to all three (wheezing, headache, brain fog, abdominal pain/cramping, etc etc) and it only takes a small amount. Is the gluten protein more concentrated in those two?

[kareng]

1 hour ago, bridgetm said:

Hi all. These forums were incredibly helpful 10 years ago when I was discovering a gluten intolerance. I tested negative for celiac, but had already cut gluten from my diet 2 months prior to testing so the docs agreed to call it intolerance, plus severe reflux and IBS.

I ate strictly gluten free for about 8 years but began allowing small amounts by necessity (there were times I had no choice). When I tolerated small amounts I started experimenting with more. At this point I can handle bleached wheat flour (basic white bread when there are no other options), occasionally whole wheat, and I do best if I am eating a high amount of protein. It's a cumulative effect so if I have to "cheat" for a couple days I'll follow it with a week of clean eating. I definitely feel better eating completely gluten free and know I need to get back on that 100% but I still give in to convenience.

My question is, I know there are people who are allergic to wheat but tolerate barley and rye, then the gluten intolerant who have to avoid all three. But what about tolerance to wheat with intolerance of barley and rye? What is the immune system reacting to?

Barley and rye cause the same symptoms I originally had to all three (wheezing, headache, brain fog, abdominal pain/cramping, etc etc) and it only takes a small amount. Is the gluten protein more concentrated in those two?

Celiac disease is an immune response.  Gluten intolerance is not.  You could be reacting to things like FODMAPS , something else, or not even really reacting.  An allergy is not just a bit of a stomach disturbance.  

as a Celiac, I can't imagine how a person would have " no choice" but to eat gluten.  This is a great example of why people should be diagnosed,  because without a Celiac diagnosis, they don't see the need to be gluten-free.  

[ch88]

3 hours ago, bridgetm said:

My question is, I know there are people who are allergic to wheat but tolerate barley and rye, then the gluten intolerant who have to avoid all three. But what about tolerance to wheat with intolerance of barley and rye? What is the immune system reacting to?

There is wheat allergy, wheat intolerance and celiac disease. Without the correct testing it is not possible to distinguish them. Different varieties of wheat, how it is cooked the state of your immune system (it can wind up and wind down), the health of your gut and lots of other things can effect how you feel and the reaction that you get. Some sourdough bread for example tests very low in gluten but shouldn't be eaten if you have celiac disease. 

The symptoms you mentioned match with celiac disease and I recommend considering that possibility very seriously. 

[bridgetm]

2 hours ago, kareng said:

Celiac disease is an immune response.  Gluten intolerance is not.  You could be reacting to things like FODMAPS , something else, or not even really reacting.  An allergy is not just a bit of a stomach disturbance.  

as a Celiac, I can't imagine how a person would have " no choice" but to eat gluten.  This is a great example of why people should be diagnosed,  because without a Celiac diagnosis, they don't see the need to be gluten-free.  

I expected a reply like this so I feel I should add: I do not take gluten intolerance or celiac disease lightly. It took two years to get a diagnosis for a myriad of gut symptoms, but that 'diagnosis' was more of a agreement to disagree on a cause and a decision to slowly add foods to my rice/chicken/applesauce diet until I regained a semblance of normal. 

Why play with it now? Years later, after unknowingly eating things I shouldn't have and then realizing I didn't react as expected, I wanted to see what I truly had to avoid and hoped that some of the past eliminations were desperate, unnecessary guesses. So here I am. 

I can eat a slice of white bread when I'm in the middle of nowhere with no Udi's in sight, but not a cookie that contains malted barley. Maybe some of my joint pain or chronic sinus inflammation would improve if I avoided that occasional slice of bread altogether, or maybe that pain is solely due to the injuries and the sinus inflammation is just a continuation of the respiratory problems I was born with. That's what I'm trying to figure out. 

[bridgetm]

1 hour ago, ch88 said:

There is wheat allergy, wheat intolerance and celiac disease. Without the correct testing it is not possible to distinguish them. Different varieties of wheat, how it is cooked the state of your immune system (it can wind up and wind down), the health of your gut and lots of other things can effect how you feel and the reaction that you get. Some sourdough bread for example tests very low in gluten but shouldn't be eaten if you have celiac disease. 

The symptoms you mentioned match with celiac disease and I recommend considering that possibility very seriously. 

I do consider it very seriously, that's how I got to this site years ago. The wheat vs barley reactions puzzled me though based on what I read when I first experienced symptoms. But what you said about immune fluctuations and form/varieties/prep makes sense.

I was planning to ask the doc to retest after being back on wheat/gluten but my insurance changed so I'm going clean and eliminating gluten again, but without being strict about cross-contamination like I was the first time around. Hopefully it will be the same improvement as the first time and I'll know what my boundaries are.

[Posterboy]

17 hours ago, bridgetm said:

I do consider it very seriously, that's how I got to this site years ago. The wheat vs barley reactions puzzled me though based on what I read when I first experienced symptoms.

 bridgetm,

It puzzles me too.

I first thought it might be a frutan (FODMAP) issue and It still could still be.

Rye has high fructan levels.

Open Original Shared Link

but it doesn't answer why barley specifically causes you (less) problems.

You might try a gluten free fructan source like garlic, onions, beans,, artichoke, asparagus etc. to see if they bother you the same way.

this article explains well the difference between fructan and gluten.

Open Original Shared Link

quoting

"The fructans are the carbohydrates, gluten is the protein, and it’s very possible that your digestive issues are caused by the fructans."

But shouldn't be the gluten content that is the difference because they all have gluten.

I hope this is helpful.

Posterboy by the grace of God,