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Another Endoscopy....intense Nausea And Vomiting

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Hi all. So, I have a few other health issues on top of celiac, crohns being the other major one. I'm about to have my fourth endoscopy, i've had extreme nausea and vomitting for three years. Readers digest version, first i was diagnosed with celiac, the nausea was blamed on that. Then, UC, the nausea was then blamed on that, then had gallbladder attacks, galbladder removed, nausea blamed on that, then gastroparesis, and a few other thigns. Problem is, I've been treated for everything under the sun, and I still have inexplicable nausea and vomitting. ( At first I was so upset bc i was diagnosed with a ton of things one after the other, but i've heard if you put anyone through the amount of tests i've been through, quite a few things would pop up, even on a seemingly healthy person)

I have been on a STRICT gluten-free diet for three years. I don't eat anything that has a chance of having gluten in it, only whole foods. My doctor brought up the term refractory sprue. He said that it is a possibility, that people who have it can see results at first, but then the diet no longer helps and one still sees symptoms. I was having relatively serious celiac reactions since about age 1, but it was never figured out untill i was 20. Sorry for the novel, but my question is, what does anyone know about refractory sprue, and i mean, diagnosed refractory sprue, not just "not feeling well" after 3 or 4 months gluten-free. Also, anyone have anything else that causes extreme nausea and vomitting that seems unrelated to food? Any suggestions of things i should look into? The doctor has so far confirmed this is not another food intolerance. I'm sort of desperate here, any help or ideas are appreciated!!!

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Are you taking any meds or supplements? Have you called the companies that make them to check for gluten statis? Have you tried eliminating dairy? Many of us have problems with casien, milk protein as well as lactose, milk sugar. Did you eliminate gluten from non-food items? Things like shampoos, toiletries, lotions etc.? How about crafting or remodeling products? Do you use any of them? Do you have pets? Gluten from petting, licking and feeding them can be an issue. Have you deglutened your home? Using seperate toasters, can openers, cutting boards etc. Do you go strictly by labels to assess gluten free statis? Many times things that look safe, like Frito Lay products, for example, or Rice Dream really are not. Sometimes it is best to go with naturally gluten free whole foods for a bit.

There are many, many ways for hidden gluten to sneak in. Above was just a few. Refractory sprue does exist but it is very rare. Have you thought about going with Enterolab testing to check for antibodies to casein, soy, eggs, yeast as well as gluten? I know your doctor has said there are no other intolerances but I would like to know how he came by this decision. I hope he actually has done some testing for other antibody reactions, but kind of doubt he has. It is much easier and more profitable to say that something can't possibly be happening than to actually take the time to figure it out. Please don't assume you have no other problems going on, or that you don't have gluten sneaking in unless you have throughly investigated the possibly of other intolerances or gluten CC issues.

There are a couple of folks here that do have refractory sprue, hopefully they will respond also. I do hope it is either another intolerance or gluten sneaking in. Refractory sprue is hard to deal with but as stated it is not very common.

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There's more than just wheat that hurts my GI Tract! I've had to try elimination diets numerous times to find culprits. So far I'm finding that chocolate, corn, dairy and probably other things are issues.

When I'm having issues I retreat to a strictly meat and veggie diet (non-starchy veggies). I let the gut settle then try to add back things I was eating before. Being very slow and deliberate about it.

It is something you might want to try as you might be having allergic or autoimmune reactions to other foods.

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Are you taking any meds or supplements? Have you called the companies that make them to check for gluten statis? Have you tried eliminating dairy? Many of us have problems with casien, milk protein as well as lactose, milk sugar. Did you eliminate gluten from non-food items? Things like shampoos, toiletries, lotions etc.? How about crafting or remodeling products? Do you use any of them? Do you have pets? Gluten from petting, licking and feeding them can be an issue. Have you deglutened your home? Using seperate toasters, can openers, cutting boards etc. Do you go strictly by labels to assess gluten free statis? Many times things that look safe, like Frito Lay products, for example, or Rice Dream really are not. Sometimes it is best to go with naturally gluten free whole foods for a bit.

There are many, many ways for hidden gluten to sneak in. Above was just a few. Refractory sprue does exist but it is very rare. Have you thought about going with Enterolab testing to check for antibodies to casein, soy, eggs, yeast as well as gluten? I know your doctor has said there are no other intolerances but I would like to know how he came by this decision. I hope he actually has done some testing for other antibody reactions, but kind of doubt he has. It is much easier and more profitable to say that something can't possibly be happening than to actually take the time to figure it out. Please don't assume you have no other problems going on, or that you don't have gluten sneaking in unless you have throughly investigated the possibly of other intolerances or gluten CC issues.

There are a couple of folks here that do have refractory sprue, hopefully they will respond also. I do hope it is either another intolerance or gluten sneaking in. Refractory sprue is hard to deal with but as stated it is not very common.

thanks for the response. i only eat whole foods that really have no way of containing gluten. my cats eat gluten free cat food. my bloodwork always comes back fine when the celiac panel is run. it has nothing to do with gluten. I've been totally gluten-free for three years, even had endoscopys come up clean since then. Its not a food intolerance, it has no correlation with food. I was just wondering if anyone has any ideas for any type of problem that would cause constant nausea and vomiting or any experience with it. I really appreciate the "check everywhere for gluten" tips, but i'm an old pro at being gluten-free.

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There's more than just wheat that hurts my GI Tract! I've had to try elimination diets numerous times to find culprits. So far I'm finding that chocolate, corn, dairy and probably other things are issues.

When I'm having issues I retreat to a strictly meat and veggie diet (non-starchy veggies). I let the gut settle then try to add back things I was eating before. Being very slow and deliberate about it.

It is something you might want to try as you might be having allergic or autoimmune reactions to other foods.

I've already tried that idea, and, it has nothing to do with food and is not any other intolerance. And, every pill i take is gluten free. i see on this forum alot of people talking about other autoimmune issues, and was wondering if anyone knew of anything that has a symptom of nausea and vomitting when it is seemingly un-food related. Again, really appreciate the ideas.

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I've already tried that idea, and, it has nothing to do with food and is not any other intolerance. And, every pill i take is gluten free. i see on this forum alot of people talking about other autoimmune issues, and was wondering if anyone knew of anything that has a symptom of nausea and vomitting when it is seemingly un-food related. Again, really appreciate the ideas.

An inner ear disturbance or infection can cause nausea and vomiting.

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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