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0range

I Didn't Have Gluten Today, But Er, What's Going On?

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I'm following very much a pseudo gluten-free diet at this point. I'm typing this quite sheepishly knowing that you're either completely gluten free or you're not. Trying to transition into it. It has been difficult with university starting, feeling too fatigued all the time, etc. I'm just curious about the process of it all. Why it seems to affect me sometimes and why not. I vividly remember not being able to eat my brother's seven grain bread or Tim Horton's cupcakes because of an immediate, stabbing pain in my abdomen. Yesterday I gave in and had normal bread. I didn't have any issues, non, nada! Right then I thought that the gluten connection may be all in my head. Later during the night, I started getting acid reflux. I thought it was likely due to the pepsi that I was drinking. Then I started having a very worrying symptom. I would try to swallow but be completely unable to swallow. As if the muscles in my neck are paralyzed or my brain is unable to tell the muscles what to do. This has happened to me sporadically in the past, but at this point it happened several times in a row. I would try to swallow, be unable to, until seconds later when there was a 'release' and I could swallow again. I hear this can be connected to acid reflux. It was incredibly scary. I avoided eating any bread today. At one point I had sausages and then half an hour later... extreme bloating, heart palpitations, the whole works! I don't understand how this is if I didn't have any gluten today? The sausages said that they "may contain wheat" (I know they put this in because there could be a 'risk' of cross contamination but it doesn't have to be in there) but would this be enough to cause such an extreme reaction when the bread I ate yesterday did not cause an instant reaction at all? I'm so sick and tired of not knowing what is going on. If gluten is part of the problem, or one of a small subset of smaller problems...

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Hi 0range,

Maybe if you think about it a little different it will help.

Imagine you have 2 identical potted plants, lets say flowers pot a and pot b.

You give them a nice drink of water and lots of sunshine every day.  But on flower pot b you also add a little bit of flower posion on Monday.  Flower b is wilted and looking pretty weak and unhealthy by Monday evening.

On Tuesday you give both flower pots some nice fertilizer and their usual water.  Flower a seems to perk up right away and look better.  But flower b seems just as wilted as the day before.  No surprise there really, right?  After all, you just poisoned flower b yesterday.  It wouldn't be reasonable to expect it to do as well as flower pot a would it?  No matter if you fertilize flower b or not, it is still sick and won't respond as well as the plant that isn't poisoned.  Even if you take flower b out of it's pot and give it all new soil to grow in, it will take a while for it to recover.

The gluten-free diet is used for treating an autoimmune disease.  The immune system isn't a lightswitch.  If you start an immune reaction it is not going to stop reacting until it decides things are safe in the body again.  That will be after the gluten is gone for a while, not the instant you decide to stop poisoning yourself.  In some people the immune system backs off in a few weeks, but in others it could keep going strongly for months.  So while you can stare at your poor little flower b and stamp your foot impatiently that it isn't doing as well as the flower in pot a, it doesn't really help flower b.  It still has to recover from the poison and that takes time.  I doubt you would really expect a flower to totally recover from being poisoned in one day.  Why do you expect your body to completely recover in one day?

Your experiment with eating regular gluten bread seems to prove that you have a strong reaction to it.

I have had similar issues with swallowing food in the past.  It seemed to get stuck about half way down.  I used to always keep some water on hand to wash it down.  Other wise it had a tendency to come back up.  The swallowing reflex is an involuntary muscle sequence once the food gets past a certain point.  It's automatic.  But there are some things I can think of that could go wrong.  One is nerve damage.  If the nerves that control the swallowing process are damaged they can't control the muscles correctly.  That can happen in people with diabetes or in autoimmune diseases that affect the nerves.

Another possibility is simple gas in the stomach.  If your stomach is too gassy you can't force more stuff in it.

There's also something called eosinophilic esophagitis that can cause swelling of the tissues in the path to your stomach which might explain it.

http://en.wikipedia.org/wiki/Eosinophilic_esophagitis

 

Lack of certain vitamins can cause the problem also, but that doesn't develop in a day.

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Great analogy about the plants, GFinDC.  That really explains the issue well.

 

It sounds like you're not strictly keeping to the diet.  Unfortunately with Celiac you can't be pseudo gluten free.  It doesn't work.  That's probably not what you wanted to hear, but it's unfortunately the truth.  But it sounds like you already know that deep down.

 

Following on GFinDC's analogy, your body is the flower b.  You just gave it gluten, which equals poison for a celiac.  If you stop giving it poison now, it will heal eventually and be a beautiful flower again.  But if you keep giving it little bits of poison, the plant will wear down after a while and the poison will cause a variety of other symptoms.  In the case of Celiac, other symptoms usually include other autoimmune diseases - thyroid problems, Lupus, arthritis, diabetes, etc.  Eventually the poison will cause the plant to die, but it is a slow process.  

 

If it helps, I think of gluten as an actual poison.  I was explaining to someone the difference between a peanut allergy and gluten intolerance like this:  If you have a peanut allergy and eat a handful of peanuts, it's like putting a gun to your head and pulling the trigger.  The effects are immediate.  If you have Celiac and eat a bunch of regular bread day after day, it's like putting small doses of arsenic in your body.  You won't die immediately, but eventually the poison will kill you.

 

How long have you been gluten free?  I know it seems really hard at first, but it becomes easier to stick to the diet with time as you learn what foods are safe. 

 

One thing that really stood out for me from your post is the sausages you ate. 

 

The sausages said that they "may contain wheat" (I know they put this in because there could be a 'risk' of cross contamination but it doesn't have to be in there) but would this be enough to cause such an extreme reaction when the bread I ate yesterday did not cause an instant reaction at all?

 

It is likely that the sausages were cross contaminated with wheat and that they just added fuel to the fire of already having the gluten baked goods.  To remain gluten free, I'd suggest avoiding anything that says "may contain wheat" or gluten or anything processed in a shared facility. 

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Great analogy about the plants, GFinDC.  That really explains the issue well.

 

It sounds like you're not strictly keeping to the diet.  Unfortunately with Celiac you can't be pseudo gluten free.  It doesn't work.  That's probably not what you wanted to hear, but it's unfortunately the truth.  But it sounds like you already know that deep down.

 

Following on GFinDC's analogy, your body is the flower b.  You just gave it gluten, which equals poison for a celiac.  If you stop giving it poison now, it will heal eventually and be a beautiful flower again.  But if you keep giving it little bits of poison, the plant will wear down after a while and the poison will cause a variety of other symptoms.  In the case of Celiac, other symptoms usually include other autoimmune diseases - thyroid problems, Lupus, arthritis, diabetes, etc.  Eventually the poison will cause the plant to die, but it is a slow process.  

 

If it helps, I think of gluten as an actual poison.  I was explaining to someone the difference between a peanut allergy and gluten intolerance like this:  If you have a peanut allergy and eat a handful of peanuts, it's like putting a gun to your head and pulling the trigger.  The effects are immediate.  If you have Celiac and eat a bunch of regular bread day after day, it's like putting small doses of arsenic in your body.  You won't die immediately, but eventually the poison will kill you.

 

How long have you been gluten free?  I know it seems really hard at first, but it becomes easier to stick to the diet with time as you learn what foods are safe. 

 

One thing that really stood out for me from your post is the sausages you ate. 

 

It is likely that the sausages were cross contaminated with wheat and that they just added fuel to the fire of already having the gluten baked goods.  To remain gluten free, I'd suggest avoiding anything that says "may contain wheat" or gluten or anything processed in a shared facility. 

I also didn't see that she had been formally "diagnosed".  That is the process I start tomorrow.  My "self test" was pretty conclusive in a few short days!  It could be other intolerances as well, not JUST gluten!  I have Sjogren's Disease as well and have some swallow issues from time to time, not like yours though.  You really must see a Dr to get a full work up.

 

Debbie "the nurse"

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