fitmama23 Posted October 10, 2012 Share Posted October 10, 2012 I just have a quick question. To make a very long story short, I had some blood work done this past Monday to test for gluten antibodies. The blood work looked for 4 different things and they all came back negative/normal. Three weeks prior to the test I had been gluten free. Before that I had eaten gluten for about a month, and prior to that, I'd only had it rarely for a few months... My question: is there a chance the tests came back as false negatives since I had already cut the gluten out for 3 weeks? Link to comment Share on other sites More sharing options...
Karen Posted October 10, 2012 Share Posted October 10, 2012 Yes. I forget the time frame, but if I recall, it's anywhere from 2 weeks to a month. When there's no exposure to it, your body doesn't have to create antibodies to attack it. I had a friend that had been gluten free for a while but her doctor wanted to run a test for Celiac and my friend was forced to suffer through eating gluten for 5 weeks prior to the test so it would accurately reflect. (In her country, she could have qualified for free or reduced gluten-free products if it was positive so she complied, and was miserable the whole time.) Link to comment Share on other sites More sharing options...
Andrea D. Posted October 10, 2012 Share Posted October 10, 2012 Yep, I would disregard the results... Link to comment Share on other sites More sharing options...
fitmama23 Posted October 11, 2012 Author Share Posted October 11, 2012 Should I eat gluten and do the test again? I just wanted an official word on it. I highly suspect it after the list of symptoms I've had the past month and now I just feel like I'm back at square one. I don't necessarily want the scope done... Link to comment Share on other sites More sharing options...
Joey Posted October 11, 2012 Share Posted October 11, 2012 If it is important to you to have that official word, then the only way you're going to get it is to redo the test after a couple weeks of daily gluten. Most of us know enough from our symptoms. What is your reasoning there? And can you plan it for a time where you don't have to be very productive? Because those couple weeks and the weeks after that of getting it out of your system are likely to be no fun at all. Link to comment Share on other sites More sharing options...
Kirsteen Posted October 11, 2012 Share Posted October 11, 2012 I'm in the UK and had the test done. It came back negative but my doctor told me she believed there were a lot of false negatives. She said, from my symtoms, I obvously had a problem with gluten so just to avoid it in the future. That was about 12 years ago and I've been gluten free ever since. It's annoying not having the official diagnosis because then I would get free bread and when I was in hospital they wanted to give me a normal (read high gluten) diet but the magic words "My doctor told me I had to avoid it" made them change their minds. Funny how they'll listen to another professional but don't want to listen to the patient. Link to comment Share on other sites More sharing options...
pandagirl Posted January 7, 2013 Share Posted January 7, 2013 I went on an elimination diet to try and find out some foods that aggravated my Crohns disease, and in the process of that saw a dramatic improvement off gluten. I did a fingerprick test and it came up positive. My GP then suspected celiac, blood tested, it was negative, but I was referred to hospital anyway. A blood test 2 weeks later at the hospital was positive. I then had to go on the gluten challenge for biopsy. I lasted 2 weeks before I was in A&E with severe diarrhoea, vomiting, dehydration, and problems with my balance, I was totally disorientated and couldn't walk properly, and my joints had swollen up. Biopsy wasn't done until 6 months later due to an NHS mix up. By which time, I'd been off gluten upon the advice of the dr who saw me in the A&E, who considered it too dangerous for me to continue the challenge, and none showed up on the biopsy. Due to the no positive biopsy I get no prescriptions, but I am assumed to be and treated as coeliac. I have the added complication of Crohns disease though, so whilst a gluten challenge for most people will be unpleasant, it probably won't be as bad as what I had! Depends if a diagnosis is important to you. Link to comment Share on other sites More sharing options...
larazee Posted January 19, 2013 Share Posted January 19, 2013 I've suspected celiac disease for about 1 1/2 years, so I've been gluten-free on my own. I had the blood test twice and nobody mentioned false negatives either time, even though I'd told them I'd been gluten-free for months! Given that I have two cousins who have tested positive for celiac, I'm surprised the doctors didn't take my issues more seriously. The GI doctor I saw "specializes" in IBS, so from the first moment he talked to me he was saying, "I bet it's just IBS". Unfortunately, in my experience, doctors just see what they want to see. I know that gluten makes me really sick, so I'm not going to make myself miserable for weeks just to prove it to a skeptical doctor. Link to comment Share on other sites More sharing options...
MamaDrew Posted May 1, 2013 Share Posted May 1, 2013 I went on an elimination diet to try and find out some foods that aggravated my Crohns disease, and in the process of that saw a dramatic improvement off gluten. I did a fingerprick test and it came up positive. My GP then suspected celiac, blood tested, it was negative, but I was referred to hospital anyway. A blood test 2 weeks later at the hospital was positive. I then had to go on the gluten challenge for biopsy. I lasted 2 weeks before I was in A&E with severe diarrhoea, vomiting, dehydration, and problems with my balance, I was totally disorientated and couldn't walk properly, and my joints had swollen up. Biopsy wasn't done until 6 months later due to an NHS mix up. By which time, I'd been off gluten upon the advice of the dr who saw me in the A&E, who considered it too dangerous for me to continue the challenge, and none showed up on the biopsy. Due to the no positive biopsy I get no prescriptions, but I am assumed to be and treated as coeliac. I have the added complication of Crohns disease though, so whilst a gluten challenge for most people will be unpleasant, it probably won't be as bad as what I had! Depends if a diagnosis is important to you. I just had a positive blood test for Celiac and now I have a biopsy scheduled May 21st. If I stop eating gluten now will the biopsy come back negative? Should I continue eatting it until then? Link to comment Share on other sites More sharing options...
Renee Lee Posted May 1, 2013 Share Posted May 1, 2013 How long have you been without gluten? If you're just now starting you're whole30, it's possible that your gut would heal in those 21 days, but it depends on how severe your case is. Some celiacs take 3-6 months to heal from a dose of gluten. This is a personal decision. What does the positive biopsy get you? Is there an insurance benefit to having both a pos blood test and a pos biopsy? From a purely health perspective, if I tested pos for celiac on the blood test, and I knew I felt/performed better without gluten, I wouldn't touch it again, biopsy or not. Having to dose yourself with a known irritant, IMO, violates the first rule of medicine, "do no harm." I think it' crazy that docs recommend that If you need the pos results for benefits or something, then go for it...but I personally would say the hell with the biopsy. Link to comment Share on other sites More sharing options...
LydiaL Posted May 2, 2013 Share Posted May 2, 2013 I am fairly sure that I'm celiac since I am sensitive to gluten and a type 1 diabetic however I have had negative test results on both the blood test and the endoscope (most likely due to lack of gluten in my system due to inaccurate prep info from my doctors prior to the procedures) I have been gluten free for almost 14 years with the exception of a brief period of uncomfortably trying to eat gluten again. Personally I don't need a positive diagnosis as I would gain nothing from it and don't want to put myself through the horror of gluten reintroduction. Link to comment Share on other sites More sharing options...
annabel Posted May 2, 2013 Share Posted May 2, 2013 Here they say you need six weeks of gluten exposure for the endoscopy to be accurate. Personally, I'd carry on eating gluten for the next three weeks just for my own peace of mind. My blood test for coeliac came back negative, but the gastroenterologist still wants to do a colonoscopy, but I plan to see how I get on with reintroducing gluten before I decide whether to go in for that. (It's well over a 6 week wait, so plenty of time for me to decide) Link to comment Share on other sites More sharing options...
MamaDrew Posted May 2, 2013 Share Posted May 2, 2013 Here they say you need six weeks of gluten exposure for the endoscopy to be accurate. Personally, I'd carry on eating gluten for the next three weeks just for my own peace of mind. My blood test for coeliac came back negative, but the gastroenterologist still wants to do a colonoscopy, but I plan to see how I get on with reintroducing gluten before I decide whether to go in for that. (It's well over a 6 week wait, so plenty of time for me to decide) Thank you everyone!! Annabel I agree with you, it's more my own peace of mind that I want to do the endoscopy and get accurate results. I've been having so many stomach issues that I really just want to know what the heck is going on. So I will continue eating the gluten for 3 more weeks then resume my Whole30. I will still stay away from everything else (dairy, soy, legumes, etc.). I agree it's horribler that I have to continue eating this just to get an accurate results. My husband is upset that they want me to continue poisoning myself. Link to comment Share on other sites More sharing options...
annabel Posted May 2, 2013 Share Posted May 2, 2013 I think you only need to consume 4 slices of bread a day, so you don't need to go too crazy. Link to comment Share on other sites More sharing options...
MamaDrew Posted May 2, 2013 Share Posted May 2, 2013 Yeah it's not much. I don't really even eat bread though so I get the gluten from other things. It's amazing everthing that has gluten! Link to comment Share on other sites More sharing options...
Beets Posted May 2, 2013 Share Posted May 2, 2013 From what I have heard, gluten tests are notorious for giving false negatives. Link to comment Share on other sites More sharing options...
Renee Lee Posted May 2, 2013 Share Posted May 2, 2013 Yeah, what Beets says. gluten is composed of a bunch of different proteins. We only have tests for a few of them. Chris Kresser wrote about this recently here on Huffington Post: http://www.huffingtonpost.com/chris-kresser/gluten-intolerance_b_2964812.html Link to comment Share on other sites More sharing options...
MrsStick Posted May 8, 2013 Share Posted May 8, 2013 And that is why I'm not going to get tested. In the last week, I ate gluten 3 times (cake...hormones...peer pressure...bad). Every time, the amount of gluten required for a stomach ache was less until the third, when the rye seeds in my salad dressing did it. Next physical, I'll mention it for sure though! Link to comment Share on other sites More sharing options...
praxisproject Posted January 9, 2014 Share Posted January 9, 2014 I couldn't complete my "Gluten Challenge", I got too sick. The gastroenterologist would not do the biopsy without completing the challenge. I'm just never eating it again, I got the only answer I need Link to comment Share on other sites More sharing options...
Cindy G Posted January 24, 2014 Share Posted January 24, 2014 I just started the Whole 30 Challenge on Monday because despite being gluten free since being diagnosed as having Celiac in 2010, I still have digestive issues - also tTG antibodies still show up in my blood work (my doctor thinks I'm cheating and nothing could be further from the truth). Though to be fair, I still eat at restaurants and might be getting some cross contamination despite trying to be ultra careful/telling wait staff. I am also hypo-thyroid and I have learned that other autoimmune diseases often occur in people who have celiac or a gluten sensititivy. It was originally suggested to me by a naturopath in 2007 (saliva test) that I had several food sensitivities along with gluten including some shellfish, and nightshades so a lot of other foods can cause problems - but I was in denial. She suggested an elimination diet but I didn't have the will power. I finally decided to get tested in 2010 after experiencing major intestinal issues. My doctor did not want to test me for celiac, telling me that so many people think they have problems since gluten free is such a thing right now. I asked him to humor me and he told me that I might be liable for the cost of the lab work if it turned up false (meaning that an insurance company can deny payment). Low and behold, the antibodies were off the chart. My mom also has celiac and didn't get a positive blood test, but ended up getting a positive test after having a endoscopy. So a blood test doesn't always turn up positive. Link to comment Share on other sites More sharing options...
praxisproject Posted January 24, 2014 Share Posted January 24, 2014 I tested negative to all the blood tests I had. It's really not like other conditions, where a test result is more definitive. Cindy - Depending on what the test actually checks for, maybe it picks up reactions to something not gluten which hits the same antibodies? Might be a good question for one of the expert podcasts, they might have some ideas. Link to comment Share on other sites More sharing options...
Coop Posted January 25, 2014 Share Posted January 25, 2014 Cindy - I was diagnosed with celiac disease a year ago - including with biopsy. I have been strict gluten free since then, but a year later and my antibodies are still "above normal". That said, they have dropped a great deal. My gastroenterologist said that since my initial antibody tests were so high, he expects them to take a year or more to get to normal. He also said that my "normal" might be above what the lab considers "normal". If that ends up being the case, we can decide if another biopsy is in order to check on the healing of my intestine. Btw, my gastro also supports the paleo/whole9 change. He said he has also taken to a paleo diet and feels much better. My personal motivation for knowing whether it is celiac disease or not (and getting the biopsy) involves that huge little step in being strictly vigilant about cross contamination. My GP said even if I turned out not to be celiac, she would have recommended I go off gluten. For me it was worth the couple months of "extra gluten" though I personally don't get acutely sick from it, so I made the best of it by saying my final "goodbyes" to my favorite gluteny foods Link to comment Share on other sites More sharing options...
Cindy G Posted January 26, 2014 Share Posted January 26, 2014 That's good to know that your Dr. supports paleo diet. My cholesterol is also high and he wanted me to go on a vegetarian diet ala Forks Over Knives and I did for 6 months and felt pretty awful. At my last checkup, I did lose about 10 pounds, but my cholesterol levels actually got higher. He'd like to see me on medication for that too. Link to comment Share on other sites More sharing options...
Coop Posted January 30, 2014 Share Posted January 30, 2014 I will be rechecking my cholesterol too in a month or so to see if the diet has improved it. Though my levels are still normal, they are higher than they were ten years ago. A friend of mine said her cholesterol levels went up after switching to whole30 but her good cholesterol levels went up even more, so her ratio has improved. I have heard that the ratio is most important, not positive about that though. Link to comment Share on other sites More sharing options...
praxisproject Posted February 4, 2014 Share Posted February 4, 2014 Cholesterol figures are also altered by weightloss, the devil is really in the detail of the figures, what they really mean, why the numbers are that way, rather than "good vs bad". Many of the tests are performed differently as well by different labs, making comparisons between test results complicated and confusing. Link to comment Share on other sites More sharing options...
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