Confused About Tests?

[Kurly]

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?

[pain*in*my*gut]

  On 8/27/2011 at 1:12 AM, Kurly said:

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!

[beebs]

  On 8/27/2011 at 1:12 AM, Kurly said:

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!!

[T.H.]

  On 8/27/2011 at 1:12 AM, Kurly said:

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. :-)

[floral]

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.