Mom-ninja. Posted August 2, 2011 Share Posted August 2, 2011 If you've had an upper endoscopy done to test for celiac disease, did the Dr. see any physical signs of it in the small intestine or were there only microscopic signs? Quote Link to comment Share on other sites More sharing options...
athena1277 Posted August 2, 2011 Share Posted August 2, 2011 My dd had the endoscopy done to positively diagnose her with celiac disease. After she was done, the doc showed me pictures of her intestines. They were very good quality pictures. Her insides looked beautiful. You would never suspect that she had been having chronic diarrhea for months and was quickly becoming malnourished. However the antibody levels from her blood work were extremely high and the parts of her intestine that was biopsied showed major damage to the villi. The naked eye cannot see the damage of CD. Quote Link to comment Share on other sites More sharing options...
acat Posted August 2, 2011 Share Posted August 2, 2011 This isn't exactly an answer to your question, but I wondered if it might help. 10 years ago my husband developed GI symptoms and lost 30 pounds in a month. The GI specialist did an antibody test for celiac and found that it was in the high range of normal. Since my husband's father was "allergic" to wheat, the doctor suggested he do a gluten-free trial anyway. He immediately improved and started to gain weight. Now he is extremely sensitive to even a trace of gluten. The doctor was reluctant to diagnose celiac disease, but admitted he sees this "rare" variation of gluten intolerance quite often. In other words, it looks like celiac but they can't prove it. I have had friends with similar experiences--clearly gluten-intolerant but no positive antibody test or endoscopy. Ultimately, you may have to make health decisions based on personal experience rather than the current research. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted August 2, 2011 Author Share Posted August 2, 2011 (edited) This isn't exactly an answer to your question, but I wondered if it might help. 10 years ago my husband developed GI symptoms and lost 30 pounds in a month. The GI specialist did an antibody test for celiac and found that it was in the high range of normal. Since my husband's father was "allergic" to wheat, the doctor suggested he do a gluten-free trial anyway. He immediately improved and started to gain weight. Now he is extremely sensitive to even a trace of gluten. The doctor was reluctant to diagnose celiac disease, but admitted he sees this "rare" variation of gluten intolerance quite often. In other words, it looks like celiac but they can't prove it. I have had friends with similar experiences--clearly gluten-intolerant but no positive antibody test or endoscopy. Ultimately, you may have to make health decisions based on personal experience rather than the current research. Did he actually have the endoscopy done? I've read that the blood test only catches a small percentage of celiac cases, however, the biopsies of the small intestine catches 100%. So just because the blood test is negative for the celiac antigen it doesn't mean you don't have it. The endoscopy with biopsy is the only sure way to know. My oldest ds has an "allergy" to wheat. He gets bad cramps when he eats it. I wanted to stop eating gluten to see if I feel better, but the GI told me not to because it would alter the results of the endoscopy. Now that it is done, I'm going gluten free. At least until I get the lab results back. My dd had the endoscopy done to positively diagnose her with celiac disease. After she was done, the doc showed me pictures of her intestines. They were very good quality pictures. Her insides looked beautiful. You would never suspect that she had been having chronic diarrhea for months and was quickly becoming malnourished. However the antibody levels from her blood work were extremely high and the parts of her intestine that was biopsied showed major damage to the villi. The naked eye cannot see the damage of CD. Thank for telling me this. I have had chronic nausea, vomiting, and diarrhea for 2 years now. My primary has taken a very laid back and nonchalant attitude about it. I'm finally fed up and went to a GI. He's ordered a battery of tests, and yesterday I had an endoscopy done. All my pictures looked healthy and normal, and the Dr. said we need to wait for the biopsy results to come back. Edited August 2, 2011 by Kleine Hexe Quote Link to comment Share on other sites More sharing options...
eloquacious Posted August 2, 2011 Share Posted August 2, 2011 I strongly believe that endoscopy should not be the be all and end all of celiac diagnosis. Basically, by the time your villi are completely destroyed, you're in bad shape... and saying that you can't diagnose it until that's happened? Baloney. I bought in to all the hooey and was horribly ill during my first pregnancy, with a tiny full-term baby (at just over 5 lbs) because just before I got pregnant and early on before I knew I was pregnant, I was doing a "gluten challenge" prior to endoscopy. Saying that you can't diagnose celiac before a positive endoscopy is like saying that you can't diagnose heart disease before someone's had a heart attack. Quote Link to comment Share on other sites More sharing options...
girligirlmom Posted August 2, 2011 Share Posted August 2, 2011 Have you ever heard of the GAPS Diet/Protocol? It helps heal many things including gut dysbiosis which mimics Celiac. GAPS is a modification of the Specific Carbohydrate Diet (SCD) which has been used since the 1950s to heal many of what looks like or mimics Celiac. So even if a test is not conclusive, these diets have you remove the offending foods - disaccharides and polysaccharides - and limit yourself to monosaccharides for a period time. We cut out all grains (wheat, rye, rice, quinoa, etc.) and starchy vegetables (potatoes, corn, etc.). We cut out sugar and all sugar substitutes and only use honey as a sweetener and only occasionally (once a month in a grain free muffin). Most start feeling better in a short amount of time, but healing takes at least 2 years, meaning you can't go back to the offending foods for that long or the problem might recur. Many don't want to ever return to the Standard American Diet, but a modified version which does include grains but properly prepared (sourdough, sprouted or soaked). The GAPS Diet, especially the GAPS Intro phase, has you focus on eating meat stock (chicken, beef, fish, etc.) to help heal and seal the lining of your gut. Chicken stock is quite similar to the lining of your gastrointestinal tract so having a lot of it helps. We have been on a quasi version of the GAPS Diet since February, but just started GAPS Intro which is a stricter part for several weeks usually. GAPS Intro cuts out all fruit, nuts, seeds, eggs, dairy, etc. and has you slowly introduce one at a time to see if there are any foods you are reacting to but don't realize. Many surprisingly find out they need to heal before handling dairy or nuts or something that they didn't realize was causing inflammation, which triggers gut dysbiosis. Once finished with this phase, most likely in a few weeks, we will return to Full GAPS for another year and a half or two. My IBS is quite improved, although it recurs if I eat things that are on GAPS but I can't handle yet so I know I have more healing to do. My children have also healed as in some of their symptoms are gone (ADD), yet they also have more healing to do. Did I want to do this diet? Absolutely NOT! I knew about it over a year ago and didn't want to do it. It seemed too hard, to restrictive, etc. I have since met many people who have done it and had success. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted August 2, 2011 Author Share Posted August 2, 2011 (edited) I strongly believe that endoscopy should not be the be all and end all of celiac diagnosis. Basically, by the time your villi are completely destroyed, you're in bad shape... and saying that you can't diagnose it until that's happened? Baloney. I bought in to all the hooey and was horribly ill during my first pregnancy, with a tiny full-term baby (at just over 5 lbs) because just before I got pregnant and early on before I knew I was pregnant, I was doing a "gluten challenge" prior to endoscopy. Saying that you can't diagnose celiac before a positive endoscopy is like saying that you can't diagnose heart disease before someone's had a heart attack. I hope you don't think I meant that celiac can't be diagnosed without an endoscopy. I have several friends IRL that have been diagnosed with it and have not had an endoscopy done. It was diagnosed with either the blood test, doing a gluten free diet trial, or both. Doing an endoscopy, prior to having done a gluten free diet trial, is one way to diagnose celiac....not the only way. Personally, I'm so tired of taking the "let's try this and see what happens" route that I opted for the endoscopy and other tests. I just wanted to know if anyone here had normal physical appearance of their intestines, and yet still have celiac seen microscopically with their biopsies. Edited August 2, 2011 by Kleine Hexe Quote Link to comment Share on other sites More sharing options...
sleepymommy Posted August 2, 2011 Share Posted August 2, 2011 Did he actually have the endoscopy done? I've read that the blood test only catches a small percentage of celiac cases, however, the biopsies of the small intestine catches 100%. So just because the blood test is negative for the celiac antigen it doesn't mean you don't have it. The endoscopy with biopsy is the only sure way to know. My oldest ds has an "allergy" to wheat. He gets bad cramps when he eats it. I wanted to stop eating gluten to see if I feel better, but the GI told me not to because it would alter the results of the endoscopy. Now that it is done, I'm going gluten free. At least until I get the lab results back. Thank for telling me this. I have had chronic nausea, vomiting, and diarrhea for 2 years now. My primary has taken a very laid back and nonchalant attitude about it. I'm finally fed up and went to a GI. He's ordered a battery of tests, and yesterday I had an endoscopy done. All my pictures looked healthy and normal, and the Dr. said we need to wait for the biopsy results to come back. It's been awhile since I researched this, but I'm almost positive that this is not true. Biopsies are definitely better at diagnosing Celiac Disease, but it's not 100% because they only take "pieces" of your intestine to biopsy here and there. Intestinal damage can happen in some places and not yet affect other places. So if they happen to biopsy areas that have not yet been damaged then the test would come back negative, even if there are other areas that are damaged. This is one of the reasons we opted not to biopsy our son. He was already doing much better off of gluten and to do the biopsy we would have to have put him back on the gluten (and watch him suffer miserably), have him go under general anesthesia and still not be guaranteed an accurate diagnosis. Quote Link to comment Share on other sites More sharing options...
eloquacious Posted August 2, 2011 Share Posted August 2, 2011 I did GAPS/SCD for over a year, then slowly went back to eating grains. Now I'm on my way back, having cut out grains but not starches this past week. It's harder, and annoying at times, but I've never felt better in my life. Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 2, 2011 Share Posted August 2, 2011 I may not be using the correct terminology, and I don't have an answer, but this is our experience. When one of our youngest was an infant/toddler, she had such trouble putting on any weight. The doctor put a little camera down into her digestive system, and said it really looked like celiac. Her lining was smooth instead of rough, which meant (apparently) food was not able to be absorbed well. They did the endoscopy with biopsy to confirm it, but it came out fine. No celiac. Years later, she has abnominal cramping all the time, almost every day. She is also lethargic. We are now readdressing all those same issues. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted August 2, 2011 Author Share Posted August 2, 2011 It's been awhile since I researched this, but I'm almost positive that this is not true. Biopsies are definitely better at diagnosing Celiac Disease, but it's not 100% because they only take "pieces" of your intestine to biopsy here and there. Intestinal damage can happen in some places and not yet affect other places. So if they happen to biopsy areas that have not yet been damaged then the test would come back negative, even if there are other areas that are damaged. This is one of the reasons we opted not to biopsy our son. He was already doing much better off of gluten and to do the biopsy we would have to have put him back on the gluten (and watch him suffer miserably), have him go under general anesthesia and still not be guaranteed an accurate diagnosis. Sorry, I meant blood test along with biopsy. And, yes, there is always room for error. I'm also not having my ds tested with endoscopy. He has tested allergic to wheat. If I come back positive as celiac I'm going to cut gluten out of his diet even though he seems to be doing fine just off wheat. Quote Link to comment Share on other sites More sharing options...
cloversandlions Posted August 2, 2011 Share Posted August 2, 2011 (edited) This isn't exactly an answer to your question, but I wondered if it might help. 10 years ago my husband developed GI symptoms and lost 30 pounds in a month. The GI specialist did an antibody test for celiac and found that it was in the high range of normal. Since my husband's father was "allergic" to wheat, the doctor suggested he do a gluten-free trial anyway. He immediately improved and started to gain weight. Now he is extremely sensitive to even a trace of gluten. The doctor was reluctant to diagnose celiac disease, but admitted he sees this "rare" variation of gluten intolerance quite often. In other words, it looks like celiac but they can't prove it. I have had friends with similar experiences--clearly gluten-intolerant but no positive antibody test or endoscopy. Ultimately, you may have to make health decisions based on personal experience rather than the current research. We had the opposite experience. When ds was five, he had symptoms that indicated celiac could be a problem (chronic constipation, slow growth after age 2, dark circles under eyes, frequent stomach pain, and rash on back and buttocks; at age five, he was the size of a typical 3yo). The initial antibody tests (the IgG and IgA, and something else) were high and high-normal; the IgG was 158, with a reference range of <20 as the norm; the IgA was 19, which was the highest number within the norm). He had more testing, including for one thing that (at least at the time) was supposed to be one of the best indicators for celiac (tTG): his level was 23, and <2 was the norm. He had an endoscopy which showed no damage (although the doctor noted severe scarring in the esophagus), but I was not convinced that the biopsy was a 100% guarantee, so we embarked on a 6-month gluten-free journey anyway. I bought new dishes and replaced anything that was porous (like a pizza stone) with something new so that there would be no cross-contamination. We didn't eat out, and I made a lot of our meals from scratch. Six months later, there was absolutely no change. :( Eventually, he was dx'd with growth hormone deficiency which helped him to catch up and grow at a normal rate, but we've never determined the cause of the other problems. They've never completely gone away, either, but they are not nearly as bad as they used to be. I hope you all find answers. And I agree with the PP - even if you don't get a definitive answer, if you think you have celiac, it won't hurt to go gluten-free (wait until after lab tests are completed), but do read up on just how much care you have to take to do that successfully. When I adhered to a shopping plan for gluten-free, I only bought items that were not at risk of cross-contamination, which meant that I would not buy items that were produced on lines where gluten-containing items were also made. I tended to buy from online stores or specialty shops. Edited August 2, 2011 by WorkInProgress Quote Link to comment Share on other sites More sharing options...
Krista in LA Posted August 3, 2011 Share Posted August 3, 2011 Ok, since you all seem to know something about this, I'll add in my scenario. I had an endoscopy a couple of years ago. He found an ulcer, inflammation, and flattened villi. He ran a blood test then which came back negative for celiac. I don't have any specific symptoms of celiac, but have suffered with stomach issues on and off as an adult, usually correlating to stressful times in my life. It has been suggested to me that if I have flattened villi, I have celiac regardless of the blood test and lack of symptoms. I am thinking about trying gluten free to see how I feel, but haven't yet. Any thoughts about the flattened villi? Quote Link to comment Share on other sites More sharing options...
keptwoman Posted August 3, 2011 Share Posted August 3, 2011 Did he actually have the endoscopy done? I've read that the blood test only catches a small percentage of celiac cases, however, the biopsies of the small intestine catches 100%. So just because the blood test is negative for the celiac antigen it doesn't mean you don't have it. The endoscopy with biopsy is the only sure way to know. Yeah, I wouldn't be accepting a "rare variation" diagnosis. The endoscopy should have been done to check before he went GF. It sounds like an uninformed doctor to me, there are a LOT of them out there! I strongly believe that endoscopy should not be the be all and end all of celiac diagnosis. Basically, by the time your villi are completely destroyed, you're in bad shape... and saying that you can't diagnose it until that's happened? Baloney. I bought in to all the hooey and was horribly ill during my first pregnancy, with a tiny full-term baby (at just over 5 lbs) because just before I got pregnant and early on before I knew I was pregnant, I was doing a "gluten challenge" prior to endoscopy. Saying that you can't diagnose celiac before a positive endoscopy is like saying that you can't diagnose heart disease before someone's had a heart attack. ITA!! In Australia you can not be officially diagnosed coeliac without it and it absolutely infuriates me. Ok, since you all seem to know something about this, I'll add in my scenario. I had an endoscopy a couple of years ago. He found an ulcer, inflammation, and flattened villi. He ran a blood test then which came back negative for celiac. I don't have any specific symptoms of celiac, but have suffered with stomach issues on and off as an adult, usually correlating to stressful times in my life. It has been suggested to me that if I have flattened villi, I have celiac regardless of the blood test and lack of symptoms. I am thinking about trying gluten free to see how I feel, but haven't yet. Any thoughts about the flattened villi? My understanding which may be wrong, is that flattened villi=coeliac regardless of bloods and symptoms. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted August 3, 2011 Author Share Posted August 3, 2011 I agree with keptwoman. Everything I have read said that it doesn't matter if the blood test comes back negative or if there is a lack of symptoms. I do not have the "typical" symptoms, but the GI suspected celiac right off the bat due to other things he asked me. I also read that flattened villi can be caused by other issues such as a giardia infection. That is one of the other things he's checking me for. Quote Link to comment Share on other sites More sharing options...
littleWMN Posted August 3, 2011 Share Posted August 3, 2011 Yes, I've had a positive biopsy from an enodscopy after a positive blood test. After the endoscopy, the Dr. said there was visible evidence of villi flattening. Biopsy confirmed. My sister has Celiac as well and her villi were not flattened (at least not visibly to the naked eye). Quote Link to comment Share on other sites More sharing options...
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