7 ms·

I have gotten really sick (to the point of being hospitalized) and I can basically tell it's related to bread in some way (very strong correlation suggests caus

by javert 14y ago

I have gotten really sick (to the point of being hospitalized) and I can basically tell it's related to bread in some way (very strong correlation suggests causation). No doctor has been able to help me at all (this is in the US). In one case, the doctor actually had to go look up "celiac diesase" (hadn't heard of it). Another told me it was just from drinking too much coffee and soda. But my symptoms go away completely and I feel fine when I totally avoid anything that might have bread (and still drink tons of coffee). This article is probably the most helpful thing I've ever found - I have never been able to figure this out from Wikipedia. And I'll probably be bringing it with me if I ever try again to get help from the medical system. Years ago my personal Wikipedia research lead me to conclude that there were no helpful tests to find out what I have. People have been telling me for years that I'm wrong. I actually started to believe it - maybe I misunderstood, or Wikipedia was wrong. Well, it looks like maybe I was right. If anybody with medical experience can comment on the accuracy of this article, that would be great. It has also been suggested to me that I may have a "yeast allergy" (by a traveller from Europe), so if anyone has any insight into that... EDIT: To be clear, I pretty much ruled out celiac long ago, because my symptoms are not _that_ serious. I either have wheat allergy, gluten intolerance (most likely), or something simply not listed in this article. The great value of this article to me is that it lists several possible problems and clarifies what tests are and are not available. In other words, it does for me exactly what a physician should have done for me years ago.

gnosis 14y ago
You can get an allergey test.[1] [1] - https://en.wikipedia.org/wiki/Allergy_test https://en.wikipedia.org/wiki/Allergy_test
- javert 14y ago
  Except the article states that those aren't useful. (Maybe you are trying to tell me the article is wrong?) > One problem with wheat allergy is that there is no good test for it. In fact, the blood tests for IgE (called RAST tests) are notoriously unreliable; for example, only one in eight children with a positive IgE test for peanuts is truly allergic. > There’s not even a mediocre blood test for gluten intolerance. The diagnosis simply relies on someone’s subjective feelings of bloating, bowel changes, or mental fogginess after eating gluten
  - gnosis 14y ago
    Well, as far as a test for allergies with intestinal symptoms, you could get an endoscopy/colonoscopy and possibly a biopsy while they're at it. A gastroenterologist should be able to tell you more.
    - javert 14y ago
      So I've spent hours today looking into all this stuff. (This may be TMI for you, but I leave it here in case it helps someone else.) I actually had a biopsy, but they took all their samples from above the duodenum, not in/below it. For gastroenteritis (stomach inflammation)/vomiting, it makes sense to take them above the duodenum. To make a ruling for coeliac (where it seems that food does not come back up, but apparently is more likely to go out the other end?), you have to take them in the duodenum. The results of my biopsy were positive for gastroenteritis, which just means you have stomach inflammation, but doesn't tell you anything about what's causing it. They thought it was from coffee/soda, but I now know that's not right, from personal experience with glutinous foods.
chrisa 14y ago
I was referred to a gastroenterologist and had an upper endoscopy which was helpful. They can look at the cilia to see if they're damaged in a way consistent with celiac or something else. It sounds like you already have done this, but there is a diet where you cut out everything that might be causing the issue, and then add things back one at a time. It can take weeks for celiac to feel better after removing wheat however, so the diet method can be a long, laborious route to take.
- VLM 14y ago
  "It can take weeks for celiac to feel better after removing wheat however," My experience with my son is yes it takes awhile for the absolute value to reach "I feel great" but the 1st derivative swung hard positive permanently and obviously in just a couple days. Curious if that's your experience? Like it takes weeks to reach 100 on a scale of 1 to 100, but in just a couple days you could tell it was clearly up an upswing. It might be easier with little kids "oh look he only threw up 7 times today instead of his usual 10 and the number seems to be going down every day..." Then too there is the stereotypical "kids heal faster" mythology etc etc.
  - chrisa 14y ago
    It turned out the main culprit for me was dairy, not celiac (though it was a confusing road to get to that diagnosis), so I only know second hand. I have a friend with celiac who said it took a month "to feel good again", but that may have been "to feel great again" like you mention.
- thrill 14y ago
  When my wife was diagnosed with celiac disease 20 years ago it was after two weeks of significant diarrhea to the point of hospitlization for dehydration. Fortunately the doctor who diagnosed her after a couple of days was young and up to speed, realizing even the hospital food was exacerbating her condition. Simply changing her diet while in hospital and she felt remarkably better after just a couple of days. One physician she saw later in life even dismissed the idea that such a condition existed, even with the GI evidence presented. There's a growing recognition of the condition, and as stated elsewhere it's not actually that hard to eat gluten free if you prepare your own food, and today there are more restaurants that will cater to it, though one always runs the risk of contamination when eating out (about 1 out of 10 I'd say based on experience, but we eat out infrequently anyway). Like anything that becomes a fad though there are people who will dismiss the idea of an intolerance - I once watched a waitress bring back a salad she'd obviously simply removed the croutons from after being asked, again, for a crouton-free salad (a particularly ugly piece of radicchio gave it away). After I pitched a fit, we left, being unable to trust the attention of the staff. Many celiacs develop other food sensitivities - once the cilia is damaged, the body seems more susceptible to future problems. As for those who think their symptoms being mild means it's not gluten intolerance, the gold standard remains an upper GI examination - it's not that bad (I've had several, for other reasons), and then you know and can react with knowledge vice guessing (there's a blood test not yet approved as I recall). While feeling good again was quick for my wife, it took several weeks to actually consider her healthy again - she had been malnourished for some time prior to the diagnosis, and any such stressful event will take time to recover from.
VLM 14y ago
"Years ago my personal Wikipedia research lead me to conclude that there were no helpful tests to find out what I have" My son has had celiac disease all his life, from a long time before it became trendy and it'll last till the end of his life a long time after its off the front page. He's one of the 1 in 100. This was before wikipedia. Perhaps a future dating system will number years as in BW before wiki and AW after wiki. Anyway needless to say I recall quite clearly, his pediatrician FINALLY did a blood test as a last resort (celiac is not a profitable disease to treat, therefore rule out everything more profitable first) which had wildly high results, then refer to gastroenterologist who knocked him out and did an endoscopy, "yup all inflamed and Fed up in there" then trial run gluten free diet and his blood antibody numbers started dropping and he nearly instantly had a normal digestive system. And like yourself he gets horrifically sick a couple hours after eating gluten containing foods and it lasts and closely resembles a very, very bad food poisoning incident (like to the point of dyhydration danger, and yes he has been poked with IVs in the ER for this). So I donno about all this "there's no tests" this is extremely heavily trodden ground. Your primary care doc might be pretty ignorant of this specific disease but I can't imagine a gastroenterologist being confused, this is after all kinda their bread -n- butter... On the other hand I donno if you technically "need" a medical diagnosis. I'll spare you the details, but shellfish and plain ole chicken eggs don't seem to be terribly well tolerated by my digestive system... solution? I don't eat them. I don't need a trendy diet or diagnosis or a pill or celebrity endorsement, I just don't eat lobster or fried eggs. Note that wheat provides approximately nothing valuable to your body other than empty calories, so feel free not to eat it. Also almost all junk/highly processed foods are stuffed with wheat as a filler so your health will most likely dramatically improve if you stop eating wheat. The reason trendy actresses feel better after stopping wheat is not the lack of wholegrain bread but the lack of twinkies, not the lack of soy sauce but the lack of an entire pan of lasagna in one sitting, etc. Its not at all like giving up citrus or giving up meat where you have to put at least a minimal amount of care into making sure you don't end up with a major nutritional problem. BTW his whole digestive system got messed up and he's also allergic to soy and milk casein proteins. Supposedly if you "tough it out" for a couple decades you can get cancer from the constant inflamation. Also his growth was pretty stunted until he got a proper diet (at which point he started growing so fast I swear you could watch him get taller). So get this checked out. I may not be a medical doctor, but it doesn't take a PHD to figure out if it makes you sick, don't eat it.
msutherl 14y ago
Bring this article from a few days ago with you instead, it's much better: http://www.nytimes.com/2013/02/24/opinion/sunday/what-really-causes-celiac-disease.html http://www.nytimes.com/2013/02/24/opinion/sunday/what-really...
- javert 14y ago
  I already saw that, but you see, it's not better. It's not useful at all. The amazing thing about the Slate article is that it gives a list of several possible issues you can have when you observe that eating wheat gives you a problem. I have pretty much ruled out actual celiac disease (though not officially); my symptoms just aren't that serious. It's pretty certain I have one of the other two afflictions listed in the Slate article, or possibly something similar that they just forgot to mention.
deleted 14y ago
[deleted]
jE22teTh 14y ago
> To be clear, I pretty much ruled out celiac long ago, because my symptoms are not _that_ serious. My symptoms were less than yours (constipation once in a while) but I am 100% confirmed celiac. I had positives on the anti-tissue transglutaminase IgG, IgA tests and endoscopy confirmed extensive damage consistent with years of celiac disease. You should rule out celiac disease with the IgG, IgA tests, followed by endoscopy if positive.
- javert 14y ago
  Thank you very much. This was actually very helpful. I have some old medical results from years ago, that I don't (didn't understand). I looked through them to see if IgA was there, and it is. I didn't know what that was until now. My IgA test was negative. The false negative rate for that test is 10%, so I have a small chance of actually having coeliac, but I probably don't. Anyway, I definitely might end up getting another biopsy done to check for coeliac. (I had one done, but it was too high up, above the duodenum, to say anything about coeliac.)

by javert 14y ago

gnosis 14y ago

You can get an allergey test.[1] [1] - https://en.wikipedia.org/wiki/Allergy_test https://en.wikipedia.org/wiki/Allergy_test

javert 14y ago
Except the article states that those aren't useful. (Maybe you are trying to tell me the article is wrong?) > One problem with wheat allergy is that there is no good test for it. In fact, the blood tests for IgE (called RAST tests) are notoriously unreliable; for example, only one in eight children with a positive IgE test for peanuts is truly allergic. > There’s not even a mediocre blood test for gluten intolerance. The diagnosis simply relies on someone’s subjective feelings of bloating, bowel changes, or mental fogginess after eating gluten
- gnosis 14y ago
  Well, as far as a test for allergies with intestinal symptoms, you could get an endoscopy/colonoscopy and possibly a biopsy while they're at it. A gastroenterologist should be able to tell you more.
  - javert 14y ago
    So I've spent hours today looking into all this stuff. (This may be TMI for you, but I leave it here in case it helps someone else.) I actually had a biopsy, but they took all their samples from above the duodenum, not in/below it. For gastroenteritis (stomach inflammation)/vomiting, it makes sense to take them above the duodenum. To make a ruling for coeliac (where it seems that food does not come back up, but apparently is more likely to go out the other end?), you have to take them in the duodenum. The results of my biopsy were positive for gastroenteritis, which just means you have stomach inflammation, but doesn't tell you anything about what's causing it. They thought it was from coffee/soda, but I now know that's not right, from personal experience with glutinous foods.

chrisa 14y ago

I was referred to a gastroenterologist and had an upper endoscopy which was helpful. They can look at the cilia to see if they're damaged in a way consistent with celiac or something else. It sounds like you already have done this, but there is a diet where you cut out everything that might be causing the issue, and then add things back one at a time. It can take weeks for celiac to feel better after removing wheat however, so the diet method can be a long, laborious route to take.

VLM 14y ago
"It can take weeks for celiac to feel better after removing wheat however," My experience with my son is yes it takes awhile for the absolute value to reach "I feel great" but the 1st derivative swung hard positive permanently and obviously in just a couple days. Curious if that's your experience? Like it takes weeks to reach 100 on a scale of 1 to 100, but in just a couple days you could tell it was clearly up an upswing. It might be easier with little kids "oh look he only threw up 7 times today instead of his usual 10 and the number seems to be going down every day..." Then too there is the stereotypical "kids heal faster" mythology etc etc.
- chrisa 14y ago
  It turned out the main culprit for me was dairy, not celiac (though it was a confusing road to get to that diagnosis), so I only know second hand. I have a friend with celiac who said it took a month "to feel good again", but that may have been "to feel great again" like you mention.
thrill 14y ago
When my wife was diagnosed with celiac disease 20 years ago it was after two weeks of significant diarrhea to the point of hospitlization for dehydration. Fortunately the doctor who diagnosed her after a couple of days was young and up to speed, realizing even the hospital food was exacerbating her condition. Simply changing her diet while in hospital and she felt remarkably better after just a couple of days. One physician she saw later in life even dismissed the idea that such a condition existed, even with the GI evidence presented. There's a growing recognition of the condition, and as stated elsewhere it's not actually that hard to eat gluten free if you prepare your own food, and today there are more restaurants that will cater to it, though one always runs the risk of contamination when eating out (about 1 out of 10 I'd say based on experience, but we eat out infrequently anyway). Like anything that becomes a fad though there are people who will dismiss the idea of an intolerance - I once watched a waitress bring back a salad she'd obviously simply removed the croutons from after being asked, again, for a crouton-free salad (a particularly ugly piece of radicchio gave it away). After I pitched a fit, we left, being unable to trust the attention of the staff. Many celiacs develop other food sensitivities - once the cilia is damaged, the body seems more susceptible to future problems. As for those who think their symptoms being mild means it's not gluten intolerance, the gold standard remains an upper GI examination - it's not that bad (I've had several, for other reasons), and then you know and can react with knowledge vice guessing (there's a blood test not yet approved as I recall). While feeling good again was quick for my wife, it took several weeks to actually consider her healthy again - she had been malnourished for some time prior to the diagnosis, and any such stressful event will take time to recover from.

VLM 14y ago

"Years ago my personal Wikipedia research lead me to conclude that there were no helpful tests to find out what I have" My son has had celiac disease all his life, from a long time before it became trendy and it'll last till the end of his life a long time after its off the front page. He's one of the 1 in 100. This was before wikipedia. Perhaps a future dating system will number years as in BW before wiki and AW after wiki. Anyway needless to say I recall quite clearly, his pediatrician FINALLY did a blood test as a last resort (celiac is not a profitable disease to treat, therefore rule out everything more profitable first) which had wildly high results, then refer to gastroenterologist who knocked him out and did an endoscopy, "yup all inflamed and Fed up in there" then trial run gluten free diet and his blood antibody numbers started dropping and he nearly instantly had a normal digestive system. And like yourself he gets horrifically sick a couple hours after eating gluten containing foods and it lasts and closely resembles a very, very bad food poisoning incident (like to the point of dyhydration danger, and yes he has been poked with IVs in the ER for this). So I donno about all this "there's no tests" this is extremely heavily trodden ground. Your primary care doc might be pretty ignorant of this specific disease but I can't imagine a gastroenterologist being confused, this is after all kinda their bread -n- butter... On the other hand I donno if you technically "need" a medical diagnosis. I'll spare you the details, but shellfish and plain ole chicken eggs don't seem to be terribly well tolerated by my digestive system... solution? I don't eat them. I don't need a trendy diet or diagnosis or a pill or celebrity endorsement, I just don't eat lobster or fried eggs. Note that wheat provides approximately nothing valuable to your body other than empty calories, so feel free not to eat it. Also almost all junk/highly processed foods are stuffed with wheat as a filler so your health will most likely dramatically improve if you stop eating wheat. The reason trendy actresses feel better after stopping wheat is not the lack of wholegrain bread but the lack of twinkies, not the lack of soy sauce but the lack of an entire pan of lasagna in one sitting, etc. Its not at all like giving up citrus or giving up meat where you have to put at least a minimal amount of care into making sure you don't end up with a major nutritional problem. BTW his whole digestive system got messed up and he's also allergic to soy and milk casein proteins. Supposedly if you "tough it out" for a couple decades you can get cancer from the constant inflamation. Also his growth was pretty stunted until he got a proper diet (at which point he started growing so fast I swear you could watch him get taller). So get this checked out. I may not be a medical doctor, but it doesn't take a PHD to figure out if it makes you sick, don't eat it.

msutherl 14y ago

Bring this article from a few days ago with you instead, it's much better: http://www.nytimes.com/2013/02/24/opinion/sunday/what-really-causes-celiac-disease.html http://www.nytimes.com/2013/02/24/opinion/sunday/what-really...

javert 14y ago
I already saw that, but you see, it's not better. It's not useful at all. The amazing thing about the Slate article is that it gives a list of several possible issues you can have when you observe that eating wheat gives you a problem. I have pretty much ruled out actual celiac disease (though not officially); my symptoms just aren't that serious. It's pretty certain I have one of the other two afflictions listed in the Slate article, or possibly something similar that they just forgot to mention.

deleted 14y ago

[deleted]

jE22teTh 14y ago

> To be clear, I pretty much ruled out celiac long ago, because my symptoms are not _that_ serious. My symptoms were less than yours (constipation once in a while) but I am 100% confirmed celiac. I had positives on the anti-tissue transglutaminase IgG, IgA tests and endoscopy confirmed extensive damage consistent with years of celiac disease. You should rule out celiac disease with the IgG, IgA tests, followed by endoscopy if positive.

javert 14y ago
Thank you very much. This was actually very helpful. I have some old medical results from years ago, that I don't (didn't understand). I looked through them to see if IgA was there, and it is. I didn't know what that was until now. My IgA test was negative. The false negative rate for that test is 10%, so I have a small chance of actually having coeliac, but I probably don't. Anyway, I definitely might end up getting another biopsy done to check for coeliac. (I had one done, but it was too high up, above the duodenum, to say anything about coeliac.)