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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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    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
    • I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.   - ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?  
    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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