Negative Celiac blood test, but positive need to give up doughnuts?
October 1, 2013 1:41 PM Subscribe
I love doughnuts--and never turning down a host's refreshments--so hard. And I don't want to be "that person." But I need to feel better, so I'm looking for experiences (and help cutting through the science and the woo) on giving up gluten (or not) even with a negative Celiac blood test.
Got very ill with a GI illness on recent exotic travels. Most symptoms (3 months later now) have subsided except for weakness/fatigue, occasional loose stools (2-4x week)....and an inability to gain back the 10 pounds I lost off of an already slim frame, even with a diet of 2000-30000 calories per day (I'm trying to get back to my pre-departure weight of 126, but stalling out at 116-118).
Infectious disease specialist I just finally saw ran no tests except a basic blood panel (she decided before I even opened my mouth, literally, that "People always think they caught a parasite but it's just diarrhea and then they want unnecessary tests," told me about the worried--and wealthy--well she's encountered who meet this profile, etc., even though I dragged my feet in coming in until 3 months had gone by and still felt sheepish about it), but interestingly, she did also order a test for celiac. Her theory was that, since I already have autoimmune thyroid disorder, the stress of the travel-related illness (no nausea but 2 weeks of constant cramping and diarrhea to the point of hospitalization for IV fluids) might have triggered an autoimmune response to gluten as well.
The blood test came back negative. Most of what I read on medical/hospital sites says that the false negative rate is very low, and mostly the result of having a condition which invalidates the test markers. At the other extreme, there are people (mostly consumers without medical backgrounds, it seems like) who claim false negatives happen all the time, etc. I don't know what to think, and frankly, my difficulty at being taken seriously by doctors beyond their 10 second heuristic means I have difficulty trusting my ability to just go to my primary care person or another specialist about this. (And before some MD reading this assumes it's because I'm some worried-well patient of Dr. Google: my autoimmune disorder, which runs in my family and was--finally--detected at a very very high antibody load, was something I couldn't get anyone to run the "unnecessary" test for for 10+years; I have another physical, obvious disorder that was debilitating before it was treated that I couldn't get anyone to run the test for for 15 years, even though I ticked off all of the warning signs for it except "be a fat, middle class middle aged white male.")
So can anyone help me with, again, experiences (and help cutting through the science and the woo) on giving up gluten (or not) even with a negative Celiac blood test?
Got very ill with a GI illness on recent exotic travels. Most symptoms (3 months later now) have subsided except for weakness/fatigue, occasional loose stools (2-4x week)....and an inability to gain back the 10 pounds I lost off of an already slim frame, even with a diet of 2000-30000 calories per day (I'm trying to get back to my pre-departure weight of 126, but stalling out at 116-118).
Infectious disease specialist I just finally saw ran no tests except a basic blood panel (she decided before I even opened my mouth, literally, that "People always think they caught a parasite but it's just diarrhea and then they want unnecessary tests," told me about the worried--and wealthy--well she's encountered who meet this profile, etc., even though I dragged my feet in coming in until 3 months had gone by and still felt sheepish about it), but interestingly, she did also order a test for celiac. Her theory was that, since I already have autoimmune thyroid disorder, the stress of the travel-related illness (no nausea but 2 weeks of constant cramping and diarrhea to the point of hospitalization for IV fluids) might have triggered an autoimmune response to gluten as well.
The blood test came back negative. Most of what I read on medical/hospital sites says that the false negative rate is very low, and mostly the result of having a condition which invalidates the test markers. At the other extreme, there are people (mostly consumers without medical backgrounds, it seems like) who claim false negatives happen all the time, etc. I don't know what to think, and frankly, my difficulty at being taken seriously by doctors beyond their 10 second heuristic means I have difficulty trusting my ability to just go to my primary care person or another specialist about this. (And before some MD reading this assumes it's because I'm some worried-well patient of Dr. Google: my autoimmune disorder, which runs in my family and was--finally--detected at a very very high antibody load, was something I couldn't get anyone to run the "unnecessary" test for for 10+years; I have another physical, obvious disorder that was debilitating before it was treated that I couldn't get anyone to run the test for for 15 years, even though I ticked off all of the warning signs for it except "be a fat, middle class middle aged white male.")
So can anyone help me with, again, experiences (and help cutting through the science and the woo) on giving up gluten (or not) even with a negative Celiac blood test?
What exactly is your question? You can give up gluten whether or not you have celiac disease, if you think it's causing your symptoms. Do you actually feel worse when you eat gluten? Or are you just going down this path because a doctor mentioned it?
I am not celiac but I eat gluten free just by way of a paleo diet. If you're looking for a framework to follow for GF eating I highly recommend starting there.
posted by joan_holloway at 1:49 PM on October 1, 2013 [1 favorite]
I am not celiac but I eat gluten free just by way of a paleo diet. If you're looking for a framework to follow for GF eating I highly recommend starting there.
posted by joan_holloway at 1:49 PM on October 1, 2013 [1 favorite]
I think you need to see a different infectious disease specialist or GI doctor. Since she didn't even test you for parasites.
My husband has celiac, and had a lifetime of symptoms--not symptoms beginning with "recent exotic travels."
posted by PhoBWanKenobi at 1:50 PM on October 1, 2013 [9 favorites]
My husband has celiac, and had a lifetime of symptoms--not symptoms beginning with "recent exotic travels."
posted by PhoBWanKenobi at 1:50 PM on October 1, 2013 [9 favorites]
Whether or not you have a negative Celiac blood test, you can certainly try elimination diets to see if there are foods which trigger your symptoms.
Further, Celiac disease is not a binary yes/no condition, but a gradient of sensitivity to the gluten antigen. Some people with Celiacs can tolerate occasional exposure, while others are very sensitive and cannot eat food that has been processed in facilities that handle wheat, despite having been labeled as gluten-free.
posted by Blazecock Pileon at 1:54 PM on October 1, 2013
Further, Celiac disease is not a binary yes/no condition, but a gradient of sensitivity to the gluten antigen. Some people with Celiacs can tolerate occasional exposure, while others are very sensitive and cannot eat food that has been processed in facilities that handle wheat, despite having been labeled as gluten-free.
posted by Blazecock Pileon at 1:54 PM on October 1, 2013
I did an elimation diet and discovered a host of things I have an intolerance for. Really delicious and tasty things.
I can handle a bit of gluten, every so often, but I don't like to play around with it because GASTRIC DISTRESS!
So...do an elimination diet and see where you are.
FWIW I am sensitive to wheat, eggs, chocolate, and nuts. Good times at the IHOP, right?
posted by Ruthless Bunny at 1:57 PM on October 1, 2013
I can handle a bit of gluten, every so often, but I don't like to play around with it because GASTRIC DISTRESS!
So...do an elimination diet and see where you are.
FWIW I am sensitive to wheat, eggs, chocolate, and nuts. Good times at the IHOP, right?
posted by Ruthless Bunny at 1:57 PM on October 1, 2013
Have you had a colonoscopy? I suggest seeing a gastroenterologist recommended to you by a doctor you trust. You can do an elimination diet, as others have suggested, but if you have an auto-immune disorder already, you could very well be experiencing onset of ulcerative colitis or Crohn's (although your symptoms don't sound exactly like either), or you could have C-Diff. Have tests been done on your stool?
posted by janey47 at 1:59 PM on October 1, 2013 [2 favorites]
posted by janey47 at 1:59 PM on October 1, 2013 [2 favorites]
Gluten is the current hot blame-all ingredient. Ebola currently has a better rap than gluten. N-thing the recos for you to go talk to more doctors and get more tests -- you may have a different allergy(ies); you may have some other underlying condition.
Do not -- NOT -- conduct an elimination diet without consulting a doctor, please.
posted by gsh at 2:03 PM on October 1, 2013 [4 favorites]
Do not -- NOT -- conduct an elimination diet without consulting a doctor, please.
posted by gsh at 2:03 PM on October 1, 2013 [4 favorites]
Talk to your doctor about an elimination diet.
You can be intolerant or allergic to a wide range of foods and additives. Elimination diet is boring and no fun at all BUT it will give your innards a chance to tell you what the problem is. It will also give your GI tract a chance to "rest" and heal itself since you're knocking out most problem foods.
posted by 26.2 at 2:04 PM on October 1, 2013 [1 favorite]
You can be intolerant or allergic to a wide range of foods and additives. Elimination diet is boring and no fun at all BUT it will give your innards a chance to tell you what the problem is. It will also give your GI tract a chance to "rest" and heal itself since you're knocking out most problem foods.
posted by 26.2 at 2:04 PM on October 1, 2013 [1 favorite]
As someone with genuine, medically-certified Celiac who was most pissed off about giving up donuts, you should know that you can still have these tasty little treats.
posted by kinetic at 2:07 PM on October 1, 2013
posted by kinetic at 2:07 PM on October 1, 2013
I'm concerned you have a parasite or something equally unpleasant.
posted by aramaic at 2:07 PM on October 1, 2013 [3 favorites]
posted by aramaic at 2:07 PM on October 1, 2013 [3 favorites]
"The blood test came back negative. Most of what I read on medical/hospital sites says that the false negative rate is very low"
I have a very rare form of Gluten intolerance. I nearly died on it but blood work was negative.
Have you been eaten Wheat before the tests were done?
I believe that a genetic test is much more reliable.
http://www.glutenfreesociety.org/genetic-testing-for-gluten-sensitivity/
posted by yoyo_nyc at 2:15 PM on October 1, 2013
I have a very rare form of Gluten intolerance. I nearly died on it but blood work was negative.
Have you been eaten Wheat before the tests were done?
I believe that a genetic test is much more reliable.
http://www.glutenfreesociety.org/genetic-testing-for-gluten-sensitivity/
posted by yoyo_nyc at 2:15 PM on October 1, 2013
I gave up gluten, all grains, processed sugar and many other delicious things a few months ago. Before then I was sick constantly, as you are--now I'm not! So that's something. I was never positively tested for any illness or sensitivity, and I was tested for many, many things. I just experimented with diets until my poop was normal again.
But yes, insist on a parasite test.
Also:
I don't want to be "that person."
There's a very annoying social stigma around allergies. You feel like a downer when you can't eat something that everyone else is eating (believe me, I know). But if you have a good attitude about it, no one else will care unless they're jerks. And it's very worth it to avoid getting sick!
posted by chaiminda at 2:30 PM on October 1, 2013 [1 favorite]
But yes, insist on a parasite test.
Also:
I don't want to be "that person."
There's a very annoying social stigma around allergies. You feel like a downer when you can't eat something that everyone else is eating (believe me, I know). But if you have a good attitude about it, no one else will care unless they're jerks. And it's very worth it to avoid getting sick!
posted by chaiminda at 2:30 PM on October 1, 2013 [1 favorite]
I had a bizarre episode of almost constant diarrhea after the birth of my first child. My GI doc did a test for Celiac and it was negative. He also did a colonoscopy because there were some people who tested negative for Celiac but had ended up having IBS due to other factors that could only be diagnosed through the anal probe.
Turns out, I had IBS that was caused by the Zoloft I switched to when I was breastfeeding.
posted by tafetta, darling! at 2:40 PM on October 1, 2013
Turns out, I had IBS that was caused by the Zoloft I switched to when I was breastfeeding.
posted by tafetta, darling! at 2:40 PM on October 1, 2013
I'm also a "medically-certified celiac" and I think you need a much better gastroenterologist. Or even a good GP! (Also IME, testing for parasites isn't a big deal--it's a stool test and that's gross, but whatever. The doc should order a test for you if you've been traveling in exotic locales.)
False negatives are possible with celiac. Did she run a full panel or just the tTG test? (Reliable info on testing, and another reliable source on testing.)
FWIW, I had a gastroenterologist I trust tell me that some individuals take much (much!) longer to recover from gastro infections. He referred to it as "post-infection IBS" where the person has IBS like symptoms for months after an infection. (This is not the same as actually having IBS.) In that instance, he said that it was okay to keep a food and symptom log and cut out foods that seemed to make things worse for a while, then reintroduce them after some time.
I was in this boat and it took me about nine months to feel all better. Since then I've been able to start eating things that previously made me feel awful, like broccoli, beans and some refined sugar.
That said, I really recommend you try another doctor and keep plugging away at the medical front. Given what you've said about your difficulties getting diagnosed in the past, is there any chance you need some help with selecting doctors and/or talking to them? Just a thought.
posted by purple_bird at 2:41 PM on October 1, 2013
False negatives are possible with celiac. Did she run a full panel or just the tTG test? (Reliable info on testing, and another reliable source on testing.)
FWIW, I had a gastroenterologist I trust tell me that some individuals take much (much!) longer to recover from gastro infections. He referred to it as "post-infection IBS" where the person has IBS like symptoms for months after an infection. (This is not the same as actually having IBS.) In that instance, he said that it was okay to keep a food and symptom log and cut out foods that seemed to make things worse for a while, then reintroduce them after some time.
I was in this boat and it took me about nine months to feel all better. Since then I've been able to start eating things that previously made me feel awful, like broccoli, beans and some refined sugar.
That said, I really recommend you try another doctor and keep plugging away at the medical front. Given what you've said about your difficulties getting diagnosed in the past, is there any chance you need some help with selecting doctors and/or talking to them? Just a thought.
posted by purple_bird at 2:41 PM on October 1, 2013
Get a parasite test. A coworker picked up giardia on a camping bike trip through the midwest and had symptoms very similar to yours, especially the inability to gain weight. It went on for months.
posted by Annika Cicada at 2:44 PM on October 1, 2013 [2 favorites]
posted by Annika Cicada at 2:44 PM on October 1, 2013 [2 favorites]
Following up on the genetic test: I have had the genetic testing done (because, along with UC and apparent gluten intolerance, I have a niece with celiac), and my understanding from my gastroenterologist is this: There are two potential genetic mutations causing celiac disease. If you have both mutations, you have a 10 percent higher chance of having celiac than the general population.
Having one or both mutations is a necessary condition for celiac, but having both mutations does not automatically mean that you have celiac. The only certain tests for celiac disease are done while you are eating wheat, which some of us (including myself) don't care to risk. I have one of the genetic mutations and (as I note above) a family history and an apparent intolerance.
I think there are more things at issue here than whether you should eliminate gluten. I still think that stool tests and a good gastroenterologist and potentially a colonoscopy or endoscopy.
posted by janey47 at 3:27 PM on October 1, 2013 [1 favorite]
Having one or both mutations is a necessary condition for celiac, but having both mutations does not automatically mean that you have celiac. The only certain tests for celiac disease are done while you are eating wheat, which some of us (including myself) don't care to risk. I have one of the genetic mutations and (as I note above) a family history and an apparent intolerance.
I think there are more things at issue here than whether you should eliminate gluten. I still think that stool tests and a good gastroenterologist and potentially a colonoscopy or endoscopy.
posted by janey47 at 3:27 PM on October 1, 2013 [1 favorite]
I'll strongly second the call to see a gastroenterologist and in particular to get checked for inflammatory bowel disease (ulcerative colitis and Crohn's disease). This isn't a classic presentation of either one but the symptoms could fit and your history of autoimmune issues significantly increases your risk. I'm not a doctor and I won't say you need a colonoscopy or upper endoscopy, but the fact that you haven't had stool cultures is appalling.
posted by telegraph at 3:42 PM on October 1, 2013 [1 favorite]
posted by telegraph at 3:42 PM on October 1, 2013 [1 favorite]
I may be missing something, but I don't understand why you are concerned about giving up gluten at this point or what reason there is to take the possibility of celiac seriously. You're feeling very unwell and you aren't sure why - the doctor you saw refused to test you for parasites and instead wanted to run a test for celiac which was negative.
I think you should see another doctor with the general question of "why the hell can't I gain weight and why do I feel so bad" before narrowing in on just one possible solution. Hopefully new doc will run more tests and be a bit more focused on helping you get better.
posted by bunderful at 4:23 PM on October 1, 2013
I think you should see another doctor with the general question of "why the hell can't I gain weight and why do I feel so bad" before narrowing in on just one possible solution. Hopefully new doc will run more tests and be a bit more focused on helping you get better.
posted by bunderful at 4:23 PM on October 1, 2013
See that better G.I. everyone else is commending to you.
But also: I have a handful of autoimmune disorders. My Western doc told me I had "metabolic syndrome" and needed to lose 15% of my body weight. I asked for a celiac blood test, which was negative. My acupuncture woo-woo doc said, "do an elimination diet while you're at it."
I followed both pieces of advice: I systematically eliminated then tested soy, milk, gluten, blah blah. Within three weeks of eliminating gluten I felt a whole lot better: less GI unpleasantness plus fewer headaches, better memory. (Within six months I'd lost a lot of weight—remarkable what no pasta, no bread can do.)
The only drawback: I'd cleared all the gluten out of my system. An intestinal biopsy (the "gold standard" test) would no longer show the miserable villi that are celiac disease's hallmark.
Obtaining a formal diagnosis would mean I'd resume eating the things which made me sick. I haven't done it eight years later. I might be celiac, I might be non-celiac gluten sensitive, and I can live with the uncertainty.
posted by Jesse the K at 4:26 PM on October 1, 2013 [2 favorites]
But also: I have a handful of autoimmune disorders. My Western doc told me I had "metabolic syndrome" and needed to lose 15% of my body weight. I asked for a celiac blood test, which was negative. My acupuncture woo-woo doc said, "do an elimination diet while you're at it."
I followed both pieces of advice: I systematically eliminated then tested soy, milk, gluten, blah blah. Within three weeks of eliminating gluten I felt a whole lot better: less GI unpleasantness plus fewer headaches, better memory. (Within six months I'd lost a lot of weight—remarkable what no pasta, no bread can do.)
The only drawback: I'd cleared all the gluten out of my system. An intestinal biopsy (the "gold standard" test) would no longer show the miserable villi that are celiac disease's hallmark.
Obtaining a formal diagnosis would mean I'd resume eating the things which made me sick. I haven't done it eight years later. I might be celiac, I might be non-celiac gluten sensitive, and I can live with the uncertainty.
posted by Jesse the K at 4:26 PM on October 1, 2013 [2 favorites]
I am gluten intolerant. I too had a negative celiac blood test but I unquestionably have a gluten sensitivity, I get bad stomach pains and gas and bloating and nausea and general feelings of awfulness whenever I eat it. I have gone gluten free and lo and behold, no more feeling like I'm going to vomit and die. My doctor said that I really should keep it up with the gluten free, that the negative celiac test doesn't really matter. We know I have a major reaction when I eat it and that I feel a lot better when I don't. So there you go.
So rule out other things (like a parasite etc), but don't put too too much weight in on the celiac test. If gluten free makes you feel better then just go with it.
posted by PuppetMcSockerson at 4:54 PM on October 1, 2013 [1 favorite]
So rule out other things (like a parasite etc), but don't put too too much weight in on the celiac test. If gluten free makes you feel better then just go with it.
posted by PuppetMcSockerson at 4:54 PM on October 1, 2013 [1 favorite]
For what it's worth, my doctor didn't even want to run a test.
"If we test you, you're going to have to gluten load for 6 weeks and maybe the test is going to come back correctly."
"That does not sound pleasant."
"Yea, we really don't like to do that anymore. Do you feel better when you don't eat gluten?" "Goodness, yes." (Seriously, I'd cleared a lifetime of symptoms in just a few weeks.)
"Then good. Keep it up."
As far as being that person goes... if it really is gluten (or another food intolerance), you -have- to be that person if you're going to feel better. Most people are pretty understanding these days, restaurants have gotten infinitely better about providing nutritional information and answering questions, and fast food joints don't blink when I order a chicken sandwich without a bun. You get used to it.
I hope you pin things down and feel better.
posted by joycehealy at 5:28 PM on October 1, 2013 [2 favorites]
"If we test you, you're going to have to gluten load for 6 weeks and maybe the test is going to come back correctly."
"That does not sound pleasant."
"Yea, we really don't like to do that anymore. Do you feel better when you don't eat gluten?" "Goodness, yes." (Seriously, I'd cleared a lifetime of symptoms in just a few weeks.)
"Then good. Keep it up."
As far as being that person goes... if it really is gluten (or another food intolerance), you -have- to be that person if you're going to feel better. Most people are pretty understanding these days, restaurants have gotten infinitely better about providing nutritional information and answering questions, and fast food joints don't blink when I order a chicken sandwich without a bun. You get used to it.
I hope you pin things down and feel better.
posted by joycehealy at 5:28 PM on October 1, 2013 [2 favorites]
As others have mentioned, before you worry about your diet, I would see another gastroenterologist (maybe you can get a referral from someone you trust) and see what they have to say. I'm all for not eating things that make you feel bad (goodbye, beloved ice cream!), but .... she didn't really listen to you and sounds like she had a pet cause all lined up and ready to go before you even finished talking. So I would finish investigating your theory/question before you start playing around with hers.
posted by RogueTech at 6:35 PM on October 1, 2013 [2 favorites]
posted by RogueTech at 6:35 PM on October 1, 2013 [2 favorites]
You have an autoimmune disorder, which means that clearly at some point in the past you saw a doctor who diagnosed you with that.
Can you go back to that doctor? Or another specialist in autoimmune disorders/your disorder?
Can you find another infectious disease specialist, possibly someone who specializes in travel medicine? I have seen a travel medicine specialist, and she had the exact opposite outlook to how you describe yours. I went for a typhoid vaccine and got sent home with reams of info-sheets about how I'm basically going to die of dengue fever. Was implored to IMMEDIATELY get in touch if I came home with the slightest unusual symptom, even if it seemed routine.
Granted, there may be things about your condition that we don't know (maybe your symptoms aren't typical of any infectious disease and it really is more likely to be something else), but there are other doctors out there, and I'd want a second opinion if I were having diarrhea several times a week months after a trip and my doctor dismissed it as all in my head.
As for the answer to your original question (to donut or not to donut), as a pro-carb person I think you should eat what you want. Though I think the smarter answer is to try eliminating gluten for a while and see if it has an effect. You never know, right? And, hey, if avoiding gluten is the key, every once in a while you can eat a donut and know to expect some fierce poops. C'est la vie, right?
posted by Sara C. at 6:35 PM on October 1, 2013
Can you go back to that doctor? Or another specialist in autoimmune disorders/your disorder?
Can you find another infectious disease specialist, possibly someone who specializes in travel medicine? I have seen a travel medicine specialist, and she had the exact opposite outlook to how you describe yours. I went for a typhoid vaccine and got sent home with reams of info-sheets about how I'm basically going to die of dengue fever. Was implored to IMMEDIATELY get in touch if I came home with the slightest unusual symptom, even if it seemed routine.
Granted, there may be things about your condition that we don't know (maybe your symptoms aren't typical of any infectious disease and it really is more likely to be something else), but there are other doctors out there, and I'd want a second opinion if I were having diarrhea several times a week months after a trip and my doctor dismissed it as all in my head.
As for the answer to your original question (to donut or not to donut), as a pro-carb person I think you should eat what you want. Though I think the smarter answer is to try eliminating gluten for a while and see if it has an effect. You never know, right? And, hey, if avoiding gluten is the key, every once in a while you can eat a donut and know to expect some fierce poops. C'est la vie, right?
posted by Sara C. at 6:35 PM on October 1, 2013
Nthing that if the doctor didn't run stool samples, she's not looking for, like, a ton of stuff. In my area PCPs can run that, no GI/tropical disease specialist needed. If those come back negative, then it's time for the GI.
Also, did the blood work she ran include thyroid? If not, it might be worth running those -- weight loss, weakness/fatigue, and GI issues can be symptomatic of hyperthyroid, and if you have existing thyroid issues, that's definitely a place to look.
IANAD, but I would definitely consult with another doctor (and maybe with your current endo as well?) before giving up gluten.
posted by pie ninja at 8:28 PM on October 1, 2013
Also, did the blood work she ran include thyroid? If not, it might be worth running those -- weight loss, weakness/fatigue, and GI issues can be symptomatic of hyperthyroid, and if you have existing thyroid issues, that's definitely a place to look.
IANAD, but I would definitely consult with another doctor (and maybe with your current endo as well?) before giving up gluten.
posted by pie ninja at 8:28 PM on October 1, 2013
This thread is closed to new comments.
posted by mrfuga0 at 1:48 PM on October 1, 2013 [5 favorites]