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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Confused About Tests?
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OK let's see... I was diagnosed with Grave's Disease, an autoimmune thyroid disease that causes the thyroid to be overactive about 16 years ago. I had my thyroid removed several years later and now take synthroid. About 7 months ago I started to have severe stomach cramps and constant D several times a day even on imodium. Went through every type of stomach/intestinal testing... colonoscopy - negative for crohns, lower bowl series - no adhesions, 2 cat scans - both normal. Then after the first catscan ended up in the hospital with white blood cells through the roof, high fever, severe stomach pains, white blood cells in urine. While in the hospital a rash appeared on the small of my back and down my buttocks... EXTREMELY itchy and HUGE! The first doctor who looked at the rash called it fungal, when I was released I saw my dermatologist and she called it hives.... So I was treated with antibiotics and fever broke, rash eventually went away. 2 weeks later everything was back including the rash. From that point on I was still sick and nothing really gave me relief. At that point they felt it was bacterial overgrowth because I had a slight improvement with antibiotics. Did 4 courses of antibiotics for 2 weeks each and no improvements. Finally one of the blood works showed my IGA at a 6 and things started to fall into place. Because it was considered boarderline the dr sent me for an endoscopy. That came back negative as well. So he sent blood for genetic testing... negative as well. So here is where we are, my doctor is fairly certain it is just an intollerance because I do not have the genetic markers, but my sensitivity is extremely severe, any cross contamination and I am sick for 2 days. I used an old spoon and bam... 10 minutes later was in the bathroom with cramps and D. We have also determined the rash in the hospital was most likely not hives but the gluten rash... and since I already have an auto-immune disease he's not 100% sure it's not Celiac, but the diet has made a huge change. I also had gastric bypass 6 years ago, so there are parts of my bowel that the dr's are unable to biopsy but could be affected. Has anyone else had so many signs of Celiac, but all tests say the opposite?

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OK let's see... I was diagnosed with Grave's Disease, an autoimmune thyroid disease that causes the thyroid to be overactive about 16 years ago. I had my thyroid removed several years later and now take synthroid. About 7 months ago I started to have severe stomach cramps and constant D several times a day even on imodium. Went through every type of stomach/intestinal testing... colonoscopy - negative for crohns, lower bowl series - no adhesions, 2 cat scans - both normal. Then after the first catscan ended up in the hospital with white blood cells through the roof, high fever, severe stomach pains, white blood cells in urine. While in the hospital a rash appeared on the small of my back and down my buttocks... EXTREMELY itchy and HUGE! The first doctor who looked at the rash called it fungal, when I was released I saw my dermatologist and she called it hives.... So I was treated with antibiotics and fever broke, rash eventually went away. 2 weeks later everything was back including the rash. From that point on I was still sick and nothing really gave me relief. At that point they felt it was bacterial overgrowth because I had a slight improvement with antibiotics. Did 4 courses of antibiotics for 2 weeks each and no improvements. Finally one of the blood works showed my IGA at a 6 and things started to fall into place. Because it was considered boarderline the dr sent me for an endoscopy. That came back negative as well. So he sent blood for genetic testing... negative as well. So here is where we are, my doctor is fairly certain it is just an intollerance because I do not have the genetic markers, but my sensitivity is extremely severe, any cross contamination and I am sick for 2 days. I used an old spoon and bam... 10 minutes later was in the bathroom with cramps and D. We have also determined the rash in the hospital was most likely not hives but the gluten rash... and since I already have an auto-immune disease he's not 100% sure it's not Celiac, but the diet has made a huge change. I also had gastric bypass 6 years ago, so there are parts of my bowel that the dr's are unable to biopsy but could be affected. Has anyone else had so many signs of Celiac, but all tests say the opposite?

Wow, you have really been thru it, huh? :( I think there are several people on here that have negative testing but have a very strong response to gluten. There is a huge spectrum of gluten intolerance, and Celiac disease is just one of the manifestations of it. Just because your tests are negative does not mean that you don't have a problem with gluten.

How long have you been on a gluten free diet? Considering you feel better, I would say you have your answer! ;) You don't need a piece of paper to tell you that you have Celiac disease. You are gluten intolerant, your body can tell you that better than any doctor or lab test!

Welcome! :)

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OK let's see... I was diagnosed with Grave's Disease, an autoimmune thyroid disease that causes the thyroid to be overactive about 16 years ago. I had my thyroid removed several years later and now take synthroid. About 7 months ago I started to have severe stomach cramps and constant D several times a day even on imodium. Went through every type of stomach/intestinal testing... colonoscopy - negative for crohns, lower bowl series - no adhesions, 2 cat scans - both normal. Then after the first catscan ended up in the hospital with white blood cells through the roof, high fever, severe stomach pains, white blood cells in urine. While in the hospital a rash appeared on the small of my back and down my buttocks... EXTREMELY itchy and HUGE! The first doctor who looked at the rash called it fungal, when I was released I saw my dermatologist and she called it hives.... So I was treated with antibiotics and fever broke, rash eventually went away. 2 weeks later everything was back including the rash. From that point on I was still sick and nothing really gave me relief. At that point they felt it was bacterial overgrowth because I had a slight improvement with antibiotics. Did 4 courses of antibiotics for 2 weeks each and no improvements. Finally one of the blood works showed my IGA at a 6 and things started to fall into place. Because it was considered boarderline the dr sent me for an endoscopy. That came back negative as well. So he sent blood for genetic testing... negative as well. So here is where we are, my doctor is fairly certain it is just an intollerance because I do not have the genetic markers, but my sensitivity is extremely severe, any cross contamination and I am sick for 2 days. I used an old spoon and bam... 10 minutes later was in the bathroom with cramps and D. We have also determined the rash in the hospital was most likely not hives but the gluten rash... and since I already have an auto-immune disease he's not 100% sure it's not Celiac, but the diet has made a huge change. I also had gastric bypass 6 years ago, so there are parts of my bowel that the dr's are unable to biopsy but could be affected. Has anyone else had so many signs of Celiac, but all tests say the opposite?

Have you had your ANAs tested as well? The fever and rash and white bloods cells could also be lupus? Not to scare you - but all these autoimmune things are connected.

The tests can show negative even if you're positive for celiac. My bloods were completely negative and I have very severe symptoms as well (I've had small bowel intersussception 4 times which is a life threatening condition) The last time I ate gluten within half an hour I was projectile vommiting and I had intersucception and ended up in emergency. All that with a negative blood test! I never did have the endo - can't do the challenge on account of I may actually die from it, so I am officially undiagnosed. These tests are stupid really - they are just so unreliable.

But I would be saying with your autoimmune history & the severity of your symptoms I wouldn't be surprised if you had it. Do you have your genes test handy? You wouldn't believe how many Drs are unable to interpret them properly - maybe put the results up here - the people on here are awesome at reading tests!!

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Has anyone else had so many signs of Celiac, but all tests say the opposite?

oh yeah, many people here have had what they consider false negative tests. There are a small percentage of celiacs who have a gene or two that is not tested for in the genetics test - sorry, but I can't remember which one it is. A few here have had that issue.

And actually, you fit the profile for someone with positive blood test and false negative biopsy. Recent studies are finding people who have the metabolic digestive issues that celiacs do, positive blood tests, but negative biopsies. They aren't absorbing right, etc....

It hasn't been studied fully, but the preliminary theories I'm hearing batted around are that the biopsy is not the gold standard they thought it was. That perhaps the blood test is positive before there is enough damage to detect in the biopsy. And if yours was just creating enough damage to teeter on the edge, then you'd fit that profile, yeah?

Also...how many biopsies did they take? 6 is the optimum, but less than 3-4 biopsies while they were down there means that a false negative is much more likely. intestinal damage can be invisible to the naked eye, and patchy, so if they don't pick the right 'patch' to biopsy, they can miss it. Which is why multiple biopsies are critical.

Might be worthwhile finding out how many biopsies were performed when they were down there. :-)

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I also had a gastic bypass and had nothing but problems and was diagnosed celiac after ten years. Initial blood work, etc came back no celiac as well. Biopsy proved my suspicion. I can't help but to believe there is a correlation between gastic bypass and celiac. Perhaps it just exascerbates an already pre-existing problem. btw I had 4 bowels obstructions, 2 resections, 2 hernias before correct diagnosis.

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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