bluther Posted November 3, 2014 Share Posted November 3, 2014 How long should I do a "Gluten Challenge" to get tested for Celiacs when I had been eating a gluten diet my entire life until doing a Whole 30? I finished my first Whole 30 about a month ago, and did 2 weeks of reintroductions after that. I discovered I had a really strong/bad reaction to gluten: foggy head, hangover feeling that lasted 3 days, bloating, cramping, migraines, insomnia, extremely tired. After talking with my doc, she suggested I get the blood test for Celiacs. But to do so would require me to eat a "gluten rich" diet for at least 30 days. I started eating gluten immediately upon hearing this so I could take the test, about 2 weeks ago. I am not sure I'm going to make it for the full 30 days, I feel so uncomfortable eating gluten again. I have permission from my doc to do the blood test now after 2 weeks, but I understand 2 weeks may not be long enough and I may get a false negative result. Everything I have read says that you should do this challenge before the test if you have cut gluten out of your diet "for awhile." But does a Whole 30 even count as "awhile?" I'm now at the point where I feel back to my "old normal" from before the Whole 30: generally a low-grade gross feeling. I don't get headaches or feel foggy all the time, but I am tired and I don't feel good generally. My questions to the forum members are: Have you experienced a gluten challenge? How long did you do it for? How long had you cut gluten out of your diet previously? What was the test result? Lastly, I'm not sure where else this fits in this post, but: I LOVED the Whole 30 and intend to do another one the minute I can stop eating gluten. I never realized how badly I always felt until I reintroduced gluten after W30. Link to comment Share on other sites More sharing options...
JJB Posted November 3, 2014 Share Posted November 3, 2014 Forgive my ignorance, but what's the benefit of having a test tell you your body "officially" doesn't like gluten? If you tested negative for Celiac, would you continue eating gluten? I would just stop eating it because it makes me feel like crap...whether a test confirmed it or not! Link to comment Share on other sites More sharing options...
missmary Posted November 3, 2014 Share Posted November 3, 2014 why do you need this test? You already know gluten is damaging to your body. If it were me, I would stop at this point, and carry on without gluten. However, if you need the diagnosis for some reason I would get tested now, knowing that it may or may not test positive. If you get a negative result could you continue to eat gluten for a few weeks and get tested again? Link to comment Share on other sites More sharing options...
bluther Posted November 3, 2014 Author Share Posted November 3, 2014 There is value in a diagnosis because for me there is a difference between (A) going gluten-free for life as a matter of medical necessity and ( living a 99% paleo lifestyle in perpetuity. The diagnosis means that there can't be any cheating in scenario A. But in scenario B, even the Whole 30 authors say it's ok to eat non-Whole 30 foods once in awhile so long as it's "worth it." For example, If I tested negative I would adopt a 99% gluten free lifestyle but wouldn't turn down grandma's cookies at Christmas. It would be worth the side effects knowing I'm not damaging my body internally, possibly permanently. If I tested positive, I would never eat gluten again. Period. I would scour restaurant menus, inquire about cross-contamination, what kinds of oils they use, etc. Link to comment Share on other sites More sharing options...
bluther Posted November 3, 2014 Author Share Posted November 3, 2014 If you get a negative result could you continue to eat gluten for a few weeks and get tested again? That's a good point, missmary. I can ask my doctor, but I gather that my insurance company won't be too happy about it. Perhaps I'll cross that bridge when I come to it. I'm still curious to hear other people's experiences with this, too. Link to comment Share on other sites More sharing options...
missmary Posted November 3, 2014 Share Posted November 3, 2014 It would be worth the side effects knowing I'm not damaging my body internally, possibly permanently. I would be careful with this one. Testing negative on the blood test doesn't really tell you this...this particular test is notorious for "false negatives" so I would instead base my choices on how I felt after gluten exposure, and how long those symptoms lasted. That should give you a pretty good sense of the extent of the damage. Link to comment Share on other sites More sharing options...
bluther Posted November 3, 2014 Author Share Posted November 3, 2014 I would be careful with this one. Testing negative on the blood test doesn't really tell you this...this particular test is notorious for "false negatives" so I would instead base my choices on how I felt after gluten exposure, and how long those symptoms lasted. That should give you a pretty good sense of the extent of the damage. I disagree that feeling icky after eating gluten is the same thing as having Celiac's Disease. Feeling gross and bloated doesn't necessarily mean that my villi are atrophied. I am all for making food choices based on how I felt after gluten exposure, that makes sense, and something I am committed to. Regardless of the test result I am not going to eat gluten on the regular ever again after this "challenge." But I don't think my gluten symptoms automatically mean I am "damaging" my body to the extent it would with Celiac's. I appreciate your opinion on whether I should or shouldn't eat gluten regardless of the test, and I share those opinions. But I posted this question because I am interested in hearing other people's experiences taking the blood test in a similar situation as me (after cutting out gluten during a Whole 30). Link to comment Share on other sites More sharing options...
Moderators ShannonM816 Posted November 3, 2014 Moderators Share Posted November 3, 2014 There's another recent thread about this here, and I know it's come up before -- you could try googling Whole30 gluten test to find some of the other discussions and see if anything seems helpful to you. Link to comment Share on other sites More sharing options...
missmary Posted November 3, 2014 Share Posted November 3, 2014 I get that celiac and gluten sensitivity are different, I just know that I don't trust this test to tell you if you have celiac or not. Does that make sense? Hopefully someone will post with more direct experience with this particular blood test/diagnosis. I will be watching with interest! Link to comment Share on other sites More sharing options...
bluther Posted November 4, 2014 Author Share Posted November 4, 2014 I get that celiac and gluten sensitivity are different, I just know that I don't trust this test to tell you if you have celiac or not. Does that make sense? Hopefully someone will post with more direct experience with this particular blood test/diagnosis. I will be watching with interest! That makes sense, thanks. And thanks for the thread direction @shannonm816, I'll check there! Link to comment Share on other sites More sharing options...
kellysensei Posted November 23, 2014 Share Posted November 23, 2014 I went gluten-free for seven weeks last fall then did an 8-week gluten challenge so I could get tested for Celiac. The first five weeks of the gluten challenge I was totally fine, and then the last three weeks I had awful joint pain in my hands and arms. As soon as I stopped eating gluten again, the pain went away. But my Celiac test came back negative. I've made the choice to be gluten-free, but I'm always wondering if I should "test" myself again, like with my favorite Christmas cookies, to see if I can handle it just a few times a year. It's so hard without an official Celiac diagnosis! Link to comment Share on other sites More sharing options...
missmary Posted November 23, 2014 Share Posted November 23, 2014 Rarely are health conditions a black and white thing. Your body has a known sensitivity to gluten. Does this mean eating a small amount of gluten once-per-year (your christmas cookies) causes irreparable damage? On the flip side, because you did not test positive for celiac, does that mean you can eat gluten without any damage at all? I suspect it is somewhere in the middle: a little bit of gluten causes some damage, from which you are mostly able to recover, but consistently eating it is a problem. Use this to guide your choices. Link to comment Share on other sites More sharing options...
praxisproject Posted November 30, 2014 Share Posted November 30, 2014 I was very very ill from doing the "gluten challenge", so ill I couldn't finish it. The false negatives are very high for celiac, so testing negative in no way means you're not celiac (not a very helful test, right?). Some celiacs do the test year after year, testing negative, but end up with a celiac result in a future year. Your inside surface is enormous, the test sample is tiny. It's an unreliable test. If you haven't been eating gluten for 8 weeks (in sufficient amounts), you will likely test negative, which is why the gluten challenge is recommended. Make sure you know the risks, I didn't and it got very scary (gluten induced ataxia). Not all celiacs have typical symptoms, but celiacs get serious damage internally, not just to the gut, but also the brain and other places. If you get a reaction to gluten, you should consider whether eating it is worth doing your body damage for, Link to comment Share on other sites More sharing options...
A_Whole_New_Me Posted December 9, 2014 Share Posted December 9, 2014 If you're really interested in getting a diagnosis, the next step in testing for Celiac's disease is getting endoscopic biopsies (you go under anesthesia, they stick a long camera tube down your throat, and they cut out tiny pieces of your intestine lining for an expert pathologist to examine). There are still false negatives, but it detects more cases than the blood test. There are definitely more risks involved, though, so you'd have to discuss with your doctor if it makes sense to go that far. Link to comment Share on other sites More sharing options...
mdragan42 Posted September 2, 2015 Share Posted September 2, 2015 A_Whole_New_Me is right. The truly defining test of Celiac is the biopsy. When I looked into it, even that required an extended gluten challenge period. It wasn't worth it to me. The systemic pain and illness from gluten was bad enough that I'm perfectly comfortable treating it as Celiac, right down to challenging restaurants about cross-contamination. Even miniscule amounts of gluten contamination send me into two days of severe joint pain and gut reaction. Not worth it. Anything that causes that much pain and inflammation is damaging your body, whether it shows up in your villi or not. Link to comment Share on other sites More sharing options...
Britishgal Posted September 2, 2015 Share Posted September 2, 2015 We have two celiacs in my extended family and my brother in law works in the gluten free industry. As far as I'm aware the only way of really knowing if you are caeliac is an intestinal procedure. That isn't to say you are not gluten intolerant or have an allergy (I have recently been diagnosed as allergic to wheat...I refused the test where I had to eat wheat for 8 weeks...they did skin allergy tests) but both of those are different from being a diagnosed celiac sufferer. Link to comment Share on other sites More sharing options...
Scuff Posted May 1, 2017 Share Posted May 1, 2017 Any updates? What were your results? Link to comment Share on other sites More sharing options...
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