dancer67 Posted June 22, 2013 Share Posted June 22, 2013 Does the biopsy ONLY tell you if you have Celiac's? Or can they tell if you just have a gluten intolerance? I am trying to understand the difference. And, how long has this disorder been around? It seems I hear more and more people with this disorder nowadays. I never even heard of this when I was younger. I am having an endoscopy/colonoscopy in a few weeks, as I have been having trouble with my stomach. I do have IBS and not sure if it has turned to IBS-D. But there are a few things that may point to a gluten intolerance. And of course right now, I do not want to eliminate anything so it does not skew the test results. I can tell you I am a little bit scared that this is what it might be. I really do not want to be on Iron for the rest of my life and have to be careful with everything I eat. How do all of you deal with living with Celiac/Gluten intolerance? It seems expensive to eat gluten free. And I do not live near any specialty stores either. And a good website to point me in would be great, Just in case. Thank you. Quote Link to comment Share on other sites More sharing options...
JenneinCA Posted June 22, 2013 Share Posted June 22, 2013 I don't think it will tell if you have an intolerance. They are looking for changes to the cells in your intenstine and I believe those only happen with celiac disease. But they can sometimes find other issues when they do an endoscopy, my son's reflux was discovered that way. I hope you get the answers you are looking for and feel better soon. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted June 22, 2013 Share Posted June 22, 2013 It is my understanding biopsy will only confirm celiac. You hear more about it today,because doctors are actually looking for it. Doctors were actually trained that in S med schools that celiac is so rare they'd never see a case, so the vast majority of doctors would not even consider it when looking for a diagnosis. Then there are doctors who wouldnt test for it unless you had a relative already diagnosed. So, no one could ever diagnosed because the first relative couldn't get diagnosed. Additionally, US doctors used to say tat celiac was a childhood disease that kids grew out of. My friend started a regular diet in her teens. She had major health problems into her 40s when she found out once you hav celiac, you always have it. My dd had a doctor from Italy. He came to the US and wondered why the incidence of celiac was so low compared to Italy. He's a leading researcher and one of the major doctors who brought the u under diagnosis problem to light years ago. Re intolerance: I've done some reading recently but don't have a link. Some people are finding that while theycsnt eat wheat products in the US they have been able to tolerate breads in Europe. Wheat grown in Europe is different. When I read tat I thought Thank you, Monsanto for altering our food production. Maybe there's more food, but people can't eat it. Quote Link to comment Share on other sites More sharing options...
Alenee Posted June 22, 2013 Share Posted June 22, 2013 I thought I'd mention this just in case you get a negative. My naturopath told me that when they do a biopsy, they're only taking a small sample from one area. The particular area may or may not be an area that the Villi are lying flat. So a person could really have Celiac but if the sample was taken from a spot that's unaffected yet, they could get a negative result. When it comes to Celiac or intolerance, the best bet is to cut out gluten and see how you feel. As to your comment about it being expensive, it can be if you're trying to replace food. Bread, cake, brownie, pasta mixes are all definitely more expensive than wheat. Since going gluten free, I've decided not to replace it. Quote Link to comment Share on other sites More sharing options...
Susann Posted June 22, 2013 Share Posted June 22, 2013 Betty- was your dr. by chance Dr. Alessio Fasano? He was at our conference last fall Dancer67- endoscopy would show if there was damage from celiac but not intolerance. Intolerance would require different testiing. Medical testing in the US is-for the major part-funded by drug companies. Cd is a hereditary, autoimmune disease controlled by diet. There's no magic pill so basically no profit. That is changing though. My dd was diagnosed with cd 3 years ago. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted June 22, 2013 Share Posted June 22, 2013 Betty- was your dr. by chance Dr. Alessio Fasano? He was at our conference last fall Yes. We started with another gastroenterologist, but it was clear that I was better informed on the disease than that doctor, so I found Dr. Fasano. He was fantastic. Dd hasn't had problems in years so we really don't need to see him anymore. ETA dd was diagnosed 11 years ago. Things have changed tremendously since then Quote Link to comment Share on other sites More sharing options...
Supertechmom Posted June 22, 2013 Share Posted June 22, 2013 It won't dx gluten intolerance. And as pp said, it may not even show Celiac depending on the skill of the doc, the pathologist and the amount of damage. Your dr should take up to 20 or more samples in as many different areas as possible. Most do 6 and call it good. :glare: You also need to check the pathologist who is going to handle the samples and perform the reading. There is a certain way to perform it. If the local one they use is not a Celiac trained or does't handle many of them or has "only one or two a year" than they probably don't know how to handle/read the samples. You can research that and insist that they use a certain pathologist. The year long diet trail is the best indicator though you have to go strict gluten free and not cheat and use gluten free everything from utensils to lotions to food to ensure you haven't fed yourself gluten somehow (including meds) Quote Link to comment Share on other sites More sharing options...
dancer67 Posted June 22, 2013 Author Share Posted June 22, 2013 Okay, thank you for the tips. I had two blood tests a few years ago to test for Celiac and both were negative. I know that doesn't mean you do not have it. Nobody in my family has Celiac. Actually, nobody in my family has any digestive issues except me. I have severe anxiety, which probably brought on my IBS back in 2007. But I never had the ummm.....bathroom issues. As I said, I would love to eliminate gluten now and see if it makes a difference, but I do not want to do anything since I am having these tests in a few weeks. Okay, so if I do NOT have Celiac, but I come off gluten and feel better. Does this mean I cannot absorb vitamins with JUST a gluten intolerance? My B12 is always great. But I do have Iron Def Anemia, which is why I had colonoscopy 2 years ago and it was clean. But did not have EGD. It was assumed it is caused by my periods, which are not even real heavy. Except on Day 2. I run every 25-30 days, and lasts 6 days. I can eat whole wheats and such. Things with gluten. And I am not running to the bathroom within the hour. Just in the mornings now I need to go, and it has been borderline diarrhea. When I was on my iron it was worse. And I had been on that same iron for 3 years. I am off it now, so it is somewhat better. None of my meds have gluten in it either. I stared low carbing/ no sugar in January. I was 143. End of February I was 138. Since this cropped up on me end of march, I am 121 now. Been there for a few weeks now. I am not gaining any weight. Even though I have upped my caloric intake. All bloodwork is normal including my liver and basic metabolic panel. CbC/diff was good. Even HGB was good and I have been on and off the iron for a few months. Stool samples negative for parasites and C. Diff. So having these tests done now to see why I have had a change in bowel habits. Funny I have internal hemorrhoids and I would belled which was the reason for the colonoscopy a few years ago. But since this all started in March I haven't had any rectal bleeding at all. I guess that is a good sign.I cut way back on whole grains just in case. Still did not help. It is not normal for me to go to the bathroom more then once a day. I do now, for the most part, but sometimes I can go up to 3 times. I am sure that is hampering my weight gain. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted June 22, 2013 Share Posted June 22, 2013 My mom has a childhood friend who was diagnosed with celiac way back in the 1950's so it is not a new disorder, even if it wasn't as commonly recognized as it is today. There is some interesting discussion in The Wheat Belly Diet about why modern wheat is causing more intolerance issues than older wheat strains. Celiacs obviously cannot have any sort of wheat, but there are others who can tolerate ancient wheat like kamut & einkorn but not modern wheat. Quote Link to comment Share on other sites More sharing options...
dancer67 Posted June 22, 2013 Author Share Posted June 22, 2013 Anyone have a favorite book, or website they refer to on what foods to avoid? I want to research this because even if my tests are negative, he may just tell me to try removing gluten from my diet anyways. And it isn't going to hurt by trying it. I know if these two test are negative, he mentioned a capsule endoscopy. I guess that gives even a better picture? How does everyone cope with being gluten free or having celiacs? Quote Link to comment Share on other sites More sharing options...
Laurie Posted June 22, 2013 Share Posted June 22, 2013 Anyone have a favorite book, or website they refer to on what foods to avoid? I like this book: Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance by Dr. Stephen Wangen Quote Link to comment Share on other sites More sharing options...
Alenee Posted June 22, 2013 Share Posted June 22, 2013 I don't have any book recommendations but I'm dealing with it mostly well. I have an intolerance which I found by cutting out carbs. At first, when I tried to cheat, I would get horrible stomach pain and gas. Now after almost a year, I can tolerate small amounts of bread but I won't go overboard or do it more than once in a month or so. I went from being very sluggish and bloated all the time to full of energy and no bloating, ever. It's a nice change and one I'm glad I committed to. Quote Link to comment Share on other sites More sharing options...
IrishMum Posted June 23, 2013 Share Posted June 23, 2013 There is some interesting discussion in The Wheat Belly Diet about why modern wheat is causing more intolerance issues than older wheat strains. Celiacs obviously cannot have any sort of wheat, but there are others who can tolerate ancient wheat like kamut & einkorn but not modern wheat. A must read if you think you are having problems with wheat. Quote Link to comment Share on other sites More sharing options...
IrishMum Posted June 23, 2013 Share Posted June 23, 2013 Anyone have a favorite book, or website they refer to on what foods to avoid? I want to research this because even if my tests are negative, he may just tell me to try removing gluten from my diet anyways. And it isn't going to hurt by trying it. I know if these two test are negative, he mentioned a capsule endoscopy. I guess that gives even a better picture? How does everyone cope with being gluten free or having celiacs? You could have a look at Marks Daily Apple, they talk a lot about the damage wheat can do. Quote Link to comment Share on other sites More sharing options...
Mom0012 Posted June 23, 2013 Share Posted June 23, 2013 My son went gluten free 11 years ago and had a tremendous response to the diet. One month after he was on the diet, it was on the front page of the paper that Dr. Fasano had done a study that showed that celiac is not the rare disorder of 1/5000 it was thought to be. His study showed that it affects 1/100 people. I feel so grateful for that study. It has made life so much easier for my family because of the awareness and availability of products. I don't think the endoscopy will tell you anything other than whether you have celiac. Have you already had blood work done with a high TtG number? Quote Link to comment Share on other sites More sharing options...
dancer67 Posted June 23, 2013 Author Share Posted June 23, 2013 I had bloodwork done 2 years ago, and it was negative. Thanks for all the suggestions everyone. Quote Link to comment Share on other sites More sharing options...
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