Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 In a message dated 8/8/2003 1:19:10 PM Mountain Daylight Time, tami@... writes: Hi everyone, I tested negative for celiac disease. After reading up on it I was sure I had it. Tami, What tests did you have done? Bob McGinnis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 In a message dated 8/8/2003 1:28:17 PM Mountain Daylight Time, tami@... writes: Bob, They did a blood test. I believe my doctor called it a celiac syrum. Does that make sense? Tami Tami, "Syrum" is spelled "serum" and essentially means the watery part of blood without the blood cells. So serology effectively means "blood tests" in this case. The celiac serology panel includes 4 tests they are following: 1. Antigliadin IgG and IgA antibodies 2. Anti-endomysium IgA antibody 3. Anti-tissue transglutaminase IgA antibody 4. Total IgA measurement (as you see except for one all the other tests are IgA based. Pts with selective IgA deficiency have a 30X higher prevalence of CD than the non-IgA deficient population) Bob THE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE. THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Bob, They did a blood test. I believe my doctor called it a celiac syrum. Does that make sense? Tami Re: celiac disease In a message dated 8/8/2003 1:19:10 PM Mountain Daylight Time, tami@... writes: Hi everyone,I tested negative for celiac disease. After reading up on it I was sure I had it. Tami,What tests did you have done?Bob McGinnis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 hi Maurita. THank you so much for the name of the cookbook. I have heard of it but was hesitant to do any more baking for I've bought everything under the sun online and it's plum awful. I can't seem to find a white bread that doesn't weigh 20lbs. Do you have any suggestions. My son is deveopementally delayed with a ton of sensory issues, so anything out of the ordinary does not work.. Thanks again, mom of ie, IGG def. dev. del. IBD, arthritis, seizures, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Hi , My daughter has IgA deficiency and has allergic symptoms to wheat. We have found a product called Tinkyada Rice Pasta Spirals (we get the organic kind) that loves. It is a bit pricey but much better than the soggy stuff that we have tried before.She loves pasta salad made with this product. I have tried many non wheat bread recipes too and they come out like bricks for some reason. Muffins (with baking soda/baking powder) seem to work a little bit better. I don't know if your son would be willing to try pasta, but may be worth a try. --Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 , we deal with these issues with who is four. She was diagnosed with eosinophilic gastroenteritis last year and has 'existed' on neocate (via G-tube) for the last 10 months. She only tolerates rice and chicken (sometimes)..when she is ill she eats nothing. We are doing food trials when she is well but getting nowhere fast. Dealing with the immediate and long term problems of a PID are bad enough without having to deal with chronic GI issues as well....especially when society tends to revolve around food!!! Keep well Mum to Jay (8), (4 PID, IVIG via port and EGE, Neocate via G- tube and food trials!!) and Max (6weeks) > My daughter has such a limited diet we cant even test her for > Celiac.She can only eat a few fresh fruits and veggies and lives on > Neocate formula. We cannot find a bread either. She can eat rice and > corn so we have looked for rice bread,but like you said it is all a > thousand pounds and not to mention yucky! She cant have milk products > or eggs (which are protein) so it really limits what she can have but > she would love a piece of toast with honey! > > > > mom to sara and Casey both CVID and 5 months bringing up the > rear Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Dear Tami, That is great you don't have celiac disease! It may be true that you are allergic to iodine. I believe in that stuff too! celiac disease << File: ATT00001.txt; charset = iso-8859-1 >> << File: ATT00002.htm; charset = ISO-8859-1 >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Thanks Martha. ie doesn't eat pasta at this time. I wish he would. We keep trying. But I will remember that product for the future. Jen mom of ie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 I'm sorry for all that you are going through with the tube and all. ie was recommended for a tube in January but we held off and he was able to gain a lb. on prednisone which also helped the rectal bleeding. Does have alot of dietary restrictions? or oral motor problems? ie Does but I give him as many French fries in canola oil, and bananas, and he cheats with bread but he loves peanut butter and jelly sandwiches. alternated with grilled soy cheese sandwiches. Potato flyers by roberts and utz potato chips also add calories and are all natural with no preservatives. I remember trying to give ie neocate orally, yuk, no way. But I had to try something, His loose bowels were making him lose weight too quickly. Good luck Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 From W.: Harper, I actually have been tested for CD. One of the blood tests was positive. It was the antigliadin IgA. My GI/hep did some small bowel biopsies when he did an endoscopy two weeks ago. The results were normal. W From Debby: , if the labs were positive, then you more than likely have CD. The bx are always spotty, and often, the bx are inconclusive. Debby From Harper: I've heard that the surface of the small intestine is the size of a tennis court. Therefore, it's easy to miss damaged areas in a biopsy. You say one of your blood tests was positive for CD. I wasn't aware that one could have a positive IgA test and NOT have celiac disease. You might want to do some research on that. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Harper, Actually, one of the members of one of my pancreatitis groups was the one that suggested I get tested for CD. She did a lot of research for me and it was kind of a mixed bag. There was some stuff that said that you can have a positive IgA from other autoimmune diseases or even just from liver disease. I was tested for antigliadin IgA, antigliadin IgG, total IgA, tTG (tissue transglutaminase) and EMA (anti-endomysial antibody). Only the antigliadin IgA was positive. My antigliadin IgA was 57 with the reference range of anything greater than 50 being considered positive. I do think it's entirely possible that I have CD and maybe I am just sticking my head in the sand for the time being. However, from everything I've read, it is inconclusive as to whether someone with only a positive antigliadin IgA definitely has CD. More than one of the articles I read did say that re-testing for all the antibodies associated with CD every few years was certainly warranted in someone with a positive antigliadin IgA. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 , I have been going back and reading past posts of you an when you would have to go to ER but that your labs were OK. What I am going to share may NOT bless you. Some months ago, I was having the exact same thing, vomiting, extreme pain, nausea, the pain was horrible, cold sweats, etc. For whatever reason, things stopped, quite suddenly, actually! For that I was grateful. But later, they started up again and I was very frustrated. My GI suggested that it was something I was eating that was contaminated. I assured that I was “anal” about the gf diet. Well, as time went on, and just re3cently, I have experienced the same problems…but have not gone to ER. What happened, was that some of my meds were contaminated with gluten when they had been filled. Actually, one of the meds had gluten, so I stopped taking it and the pains stopped. Now, without fail, at least so far, when I have those symptoms with severe reaction, I know it is related to gluten. My gut says that if you went on a strict gf diet….meds, food, get rid of wooden spoons, etc., you will stop having to go to ER….it is important to be totally gluten free and NOT cheat in the least. For me, I now KNOW when I have accidentally ingested gluten. Debby Re: [ ] Celiac Disease Debby, the thing is that only one of the four blood tests they did came back positive. I've done a lot of research and the verdict is still out as to whether only having the antigliadin IgA positive is enough to confirm a diagnosis of CD. Maybe I'm just telling myself what I want to hear because the thought of having to eliminate gluten from diet seems overwhelming at this point. My GI wasn't even going to do the biopsies, but then my internal med doc wanted him to do an endoscopy because I have had so many problems with vomiting lately and he thought I might have a stricture. The GI just decided to do the biopsies since he was in there anyway. I may actually have CD and I may be stupid for not wanting to try a gluten free diet, but right now I just don't have the energy to think about having one more thing wrong with me! I know that may sound stupid, but right now I feel so overwhelmed with all I have on my plate that I think the thought of having to deal with one more thing might just send me over the edge at this point! If my GI were to tell me that I do have CD, then I would deal with it as I must but for now, I just cannot do it without him telling me for sure that I do have it. Maybe in a few weeks, I'll be stronger and can give the gluten free diet a trial run. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Debby, You are right that what you are telling me is not totally a blessing. Maybe it's a mixed blessing. The truth is that I suppose I really have nothing to lose by trying a gluten free diet for a month. In a way, celiac disease makes sense. I've never fit the text book picture for almost any of my illnesses, why should I for celiac disease? You have convinced me to at least seriously consider that most of my problems lead back to gluten in my diet. I am so totally clueless that I don't even know what a gluten free diet entails. I guess I'm going to have to do some research and figure out what I can eat. How do you find out whether your medications have gluten? Can you tell me some good websites to start with? I didn't really want to hear what you said, but that's mostly because in the back of my mind I've wondered whether you are right! Dang it! I do so hate it sometimes when other people are right! However, if giving up gluten could put an end to the pain, nausea, vomiting, and constant ER trips, it would be very well worth it! Geez, I've eaten nothing but clear liquids for the last 24 hours. I ate about a third of a grilled chicken sandwich after having the celiac plexus block done yesterday and barely made it home before I had horrible lower belly cramps and diarrhea. I am hungry right now, but I am afraid to eat. Guess I'll have a look at some gluten free choices and see if I have anything in the house that I could eat. Thanks for your persistance and info. W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Can, thanks for the prayers. You must be a very devoted aunt to try to learn about AIH to help your little niece. She is in my prayers, as are all the members of our group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 For those of us that are unfamiliar with Celiac disease...t is a separate condition and isn't listed as a condition specifically for the Spondyloarthropathies. It is important when one has digestive and intestinal problems that they see a gastro doctor for proper DX so that the treatment is properly administered. There are so many diseases that have very similar symptoms...like Crohn's Disease and IBD or even IBS and each are treated differently from each other. Some members of the Kickas support group are convinced that a starch free diet helps AS. It has not been proven that this works and many in the group have tried it without success. A few years ago, I was on the starch free/sugar free diet for several months trying to lose weight.....and felt that in the beginning it might have helped my AS. It really didn't....as I had one of my worse flare up of IBD. Sometimes when we try new treatments, we attribute symptom free times with the treatment....only to find out later it was just a lull in symptoms. This is why many unconventional treatments seem to work. Arthritis, IBD, or IBS, in general, are some of the diseases that symptoms come and go....symptoms more pronounced than other times...or we wake up one morning and all symptoms seem to be almost gone. That is why we really should stick with treatments that have been well documented by many years of study. There are many people on the Internet offering lab tests and cures that take advantage of this. They offer remedies, special diets, special testings that are ineffective or worthless and sometimes very expensive both to our finances and bodies. We have been talking about mouth ulcers lately. A doctor really has to be the one to Dx even this...as there are so many different reasons for this....viral, fungus, vitamin and mineral deficiencies, anemia, medicine side effect, diabetes, intestinal problems, etc. Only a doctor can tell for sure and Rx the right drug for treatment. It is one of the symptoms of RS, but it also can be a symptom of many other problems and each problem should be treated with different types drugs. Click here: Celiac Disease -- familydoctor.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Here's the link for celiac disease. I don't think it went through on the last post? http://familydoctor.org/236.xml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Dear Connie and all, Although celiac disease is not caused by the spondy diseases, alot of us have stomach problems. Celiac, however, can work the opposite way, and cause symptoms that resemble RS and other conditions, excluding AS, of course. If you test positive for Celiac antibodies, it is also possible to also have IBD and/or IBS too. There is certainly no cure for RS, but if diet helps and you have proven that to yourself based upon trial and error...then why not? Doctors sometimes tell you that diets don't work with serious illnesses, but I am living proof that they do make a significant change in your condition (especially the stomach stuff). I had non-stop diarrhea for months until I related this to celiac and found out I was positive. In addition to medical testing, I feel that everyone knows their own body best, and what they respond to. I've had the medical testing, but I also know that eating certain foods makes me sicker. I didn't need a doctor to tell me to stop eating them, or to have officially diagnosed Celiac disease before I would have changed my diet! The test speaks for itself, even though the more definitive one was negative, which apparently is common in adults that are actually positive. Good advice for anyone: There's always a reason when a test comes up positive, or out of range, it should never be simply forgotten until your next annual exam. Don't wait for a doctor to suggest further testing, tell him you want it checked further right away! My mother died because of a lack of concern over a finding on a blood test quite some time before she became gravely ill. I won't say what it was on here, but it first presented as a vitamin level that showed up high on the reading, and did so on another test 6 months later. It was still blown-off by the doctor as nothing to worry about until after 1-1/2 years of the same, and her getting sicker and sicker. By then it was too late, and the illness was incurable. Further testing would have identified the true cause, which was far more serious than you can ever imagine. While it's good to get official diagnoses from doctors, you also have to research on your own and change your diet/lifestyle to what suits you and makes you feel better. There's nothing to lose by trying to make yourself as healthy as you can in our situations. I would tell anyone with mouth sores to get tested for herpes, as it is one of the most common causes and is simple to diagnose. Also, any immunosuppressant can bring herpes out (and other lurking viral/bacterial conditions as well), even if you've never had symptoms before going on it. From there, you can seek further testing if negative, or if the medication given doesn't work. I'd also suggest that everyone get copies of their bloodwork (and any tests) after completion each and every time, and take note of the levels that are out of range. Then compare prior tests to newer tests, and look for patterns. You can find all the meanings of the blood tests online,and even info on what diseases they could be associated with, or get a book at the store. It's pretty easy to do, and it's vital to be involved in your own health in this manner. I always suspected I had other conditions in addition to reiters, and I indeed did (i.e., the herpes and some degree of celiac disease). In fact, my RS got severe during some periods over the last year, and I knew something was very wrong. BINGO!...I had developed anemia during that time period! I saw it developing myself, before the doctor even noticed it, as I had copies of all my tests and did comparisons. My regular doctor said it was of no concern when I brought it up at first and even when I noticed a pattern. When I saw it kept getting progressively worse, I insisted on seeing a hematologist and wouldn't take no for an answer. Boy, did he have a different view on this! He actually told me that I would have needed a transfusion had I waited another month or so longer and it could have had serious consequences. I'd NEVER even bother with internet sites offering testing. If I want something checked, I research it first, find the medical test required, and then take it to the doctor and tell him exactly why I want it done. If I'd never asked for the Celiac test myself, it would never have been done and I'd still be clueless as to why I had stomach problems and constant diarrhea. At least now, I know why I cannot tolerate certain foods too well. Same goes for the herpes causing the canker sores, it would have NEVER been tested had I not brought it up myself and asked the doctor for the test. It turned out to be positive, and I got on Valtrex immediately and had some relief after years of severe suffering with several in my mouth at a time. It's nice to know there's indeed a reason for my suffering when I eat certain foods. It doesn't take much to notice a pattern over a period of time. Some may not agree with my opinion, but I really take a proactive stance on medicine when it comes to diagnosing other conditions affecting my RS. I think alot of people have other conditions that affect their illnesses, and by finding out what they are, some relief can be found. Even if it's just a little, such as relieving stomach problems, it makes a big difference in the quality of life. Sorry this is so long! I started out as a simple letter..... Debra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Grannyof9, I agree with your perspective. Also, if I don't eat starches, my diarrhea actually gets worse. I haven't seen the gastroenterologist in over a year. I'm going to make an appointment. My colonoscopy was normal, but I think I should have an endoscopy. I've never had that. Regards, Janet in SF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Debra, I agree with your perspective too! My mom went through a similar thing of not having cancer diagnosed when it should have been, which is why I'm anxious and hypervigilant and proactive about medical testing. I will see the gastro. doc as soon as I can. Maybe he will do these additional tests for celiac. I could try substituting rice for wheat for a while and see if it makes a difference. I don't think rice has gluten does it? God Bless. I really appreciate hearing everyone's perspective. Janet in SF ReA since 1973; diagnosed 1997; HLA-B27+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Natasha: Does she have celiac (which means she cannot tolerate gluten) disease? There is a wealth of information becoming available now and there are cookbooks available that will help you. I bought some on Amazon.com because I am wheat intolerant and wanted to know about cooking with quinoa and amaranth. I have found some wonderful recipes for cooking without wheat~pancakes, biscuits, cakes, etc. I prefer quinoa flour over amaranth but will mix them. There are now many pastas available in quinoa/corn or rice mixes. Check out your health food stores. It takes a lot more time to cook things from scratch but you can make large portions and freeze smaller ones to dethaw and reheat when needed. This is what works for me. in La Selva Beach e-mail me if you want more info schmidtmba@... Re: Cause - what the CDC says -A QUESTION(S) Hi Adrienne: Thank you for responding to my question concerning the daughter of my friend. If she were to take the digestive enzymes and perhaps some Charcoal for her very acidic stomach would this interfere with a possible siliac (sp???). I know that you can't make medical decisions (sp??) and diagnosises but I really don't know that much about nutrients, etc. boy does my brain feel fried tonight- Thank you, Natasha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 > > Hi All > > I have been out of the RN for a while now, but I have been asked by a friend > if an individual with celiac disease can join the forces, does anyone have > the answer can you point me in the right direction > > Regards > > Hello.. I hope this may help i am current serving medic in the RN we do have ranks who have gluten free diets within the service...However your mate may find it hard to go through the AFCO to get a answer as they have no knowledge of this sought of thing but they should refer him upto a suitable doctor who can give a yes or no..but as you are well aware the military are loathe to take people with any ongoing medical conditions..our OZ friends advice on a ( plan ) for lifestyle is a good idea as this will stop alarm bells ringing straight off..i will speak to my surg cmdr tommorow for you and try to get a correct by the book answer for you as it will be in some obscure BR but at the end of the day it may be down to a civvi doctor / consultant to decide...will get back to you soon ..IAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Both are autoimmune disease. I know its common for diabetes and celiac, so I would think Thyroidism and celiac would be common too. I don't know for sure though. Missi ________________________________ From: hyperthyroidism [mailto:hyperthyroidism ] On Behalf Of BanjoBoyd@... Sent: Saturday, May 06, 2006 2:04 PM hyperthyroidism Subject: Celiac disease Does anyone have any info about relation of Celiac disease to thyroid disease? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 There are many articles out there with references to celiac disease being linked to thyroid disease, there are a few links below but I'm sure you could find more info with your own searches. Carol http://thyroid.about.com/cs/latestresearch/a/celiac.htm http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm http://healthlink.mcw.edu/article/956622658.html -- Celiac disease Does anyone have any info about relation of Celiac disease to thyroid disease? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Thanks Carol for the great info. Celiac disease Does anyone have any info about relation of Celiac disease to thyroid disease? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Hmmm, I was told it's common in kids with Diabetes- that's why amanda was checked. Her endo recommended it. But we are seeing so many kids with DS who have celiac. Quote Link to comment Share on other sites More sharing options...
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