Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Confused About Tests?
0

5 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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! :)

0

Share this post


Link to post
Share on other sites

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!!

0

Share this post


Link to post
Share on other sites

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. :-)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,916
    • Total Posts
      919,623
  • Topics

  • Posts

    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
    • No actual diagnosis/genetic results.
      About 30% of people have a gene for Celiac.  They don't all have it because only about 1% of the population has Celiac.   It is quite possible she has something else that is causing her trouble.  Sometimes eliminating gluten helps that problem, like FODMAPS.   If it were me, I would keep her strictly gluten-free for a year or so.  See if anything develops.  Then I would try her back on small doses of gluten.  If it is something like FODMAPS, she may be able to tolerate some gluten after a while.  I would do that for 3 months .  If she is having issues I would then get her tested with a full Celiac panel and, if positive, an endoscopy.  Even if the panel is negative, if she is having issues, I would pursue more testing, ends, colonoscopy, etc. For schools to take a gluten-free or any special diet seriously, you will need a doctors note.  I am assuming US might be different in other countries.
    • No actual diagnosis/genetic results.
      Hi- new here but have been reading a lot of posts (Long post, last two paragraphs have actual question)  my four year old daughter probably has celiac but I don't know if I'll ever get a definitive diagnosis at this point.    Backstory: growth Delays, GI issues and a few other symptoms as a baby/young toddler. Did not have blood work done but went straight to biopsy which was negative. Always still had suspicions that gluten bothered her.    Started developing more symptoms around 3, by 3.5 they were pretty bad and her dr recommend eliminating gluten. (Blood in stool, rashes, low grade fever, joint pain, stomach pain and bloating, behavior issues) Everything cleared up quickly! Yay. Still had occasional gluten because I was under the impression it was "just an intolerance" and her symptoms kept up/got worse with each exposure. (Developed vomitting as most recent symptom) So I wanted to know if it was celiac. Can't do blood or biopsy since she's been mostly off gluten for months by this time.  I really was hoping to have a concrete answer and diagnosis, So we did genetic testing recently. It came back positive for half of DQ2 (beta subunit). Her dr isn't giving her official diagnosis but says "she is at a fairly low risk" but with her symptoms doesn't that mean she has developed it??!   Either way he says to keep her off gluten but I don't understand why he won't diagnose? Right now I am just telling people (besides family) that she has it because it's too hard to explain it all but do you think an actual diagnosis would be beneficial in any way? Should I push the issue with her dr? 
    • Awaiting Biopsy Results
      Thanks for the advice and encouragement, Gemini. I appreciate having additional insight into my situation. Celiac being the cause of my health issues makes more and more sense the more I learn about it, and eliminating gluten sounds more and more like the right choice for me.
    • Did Jennifer Esposito Leave Town Amid $43 Million Gluten-Free Bakery Lawsuit?
      The topic of this forum is "Celiac Disease - Publications & Publicity," so certainly it fits in here, and in fact, this topic is designed specifically to handle any media coverage that relates to celiac disease and/or the gluten-free diet.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,961
    • Most Online
      1,763

    Newest Member
    foodabc
    Joined