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

  • Announcements

    • admin

      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.

Blood Test Says Positive, But Endoscopy Says Negative!
0

10 posts in this topic

Please bear with me if I say more than I should have mentioned, I tend to write a lot:

 

I have been suffering with severe anxiety, panic attacks and horrible headaches for most of my life. When I was about 15 years old, my gastroenterologist said I have celiac desease because my blood test showed highly elevated levels of whatever it is that shows doctors someone is positive for it. 

Me and my parents thought it was nonesense. A disease where you cannot eat bread? We never heard of that. Bread is life. Bread is what saved many people throughout history during wars and famine. All I eat is bread! Every day it's spagetti, bread, bagels, burgers, hot dogs, wheat cereals, wheat porrage, farina, and so on and so forth. I hate most meat, fish, poultry, and milk products. Even when I have meat fish or whatever, I must have it with huge quantities of bread to "not feel the meat".

 

Anyway, in between severe diarrhea and horrible anxiety attacks, I got scared and lived gluten free for about a month. I bought rice cakes in a health food store, potato pasta, and other things like that. I noticed that my anxiety isn't getting any better, and after I got a CAT scan and realized I dont have a tumor, my diarrhea magically stopped. I continued suffering with anxiety and headaches, but went back to eating tons of wheat products because I was sick and tired of gluten free diet. When I was something like 17 years old, I had an endoscopy done, specifically aimed at taking a sample of my insides to test for celiac desease. The test came back negative! But my doctor said that it would be nice to do another test to check the intestines where they go from the rear, not from the front if you know what I mean... I refused because I was terrified, having experienced anestesia for the first time in my life during the endoscopy and the overall experience was horrifying for me. Doctor did not press me - he said most likely i DO NOT have celiac disease anyway.

 

 After many years of suffering, somehow my headaches and anxiety subsided and I returned to normal life. I didn't do anything to make it so. I just suddenly became better after an 11 year nightmare. I lived for 7 years, mostly headache and anxiety free and ate tons of wheat products, but my GP, every year consistently told me that each of my blood tests are coming back positive for celiac sprue colitis. I asked her, why is it then that I am eating bread, pasta, etc, and I am fine?! She said it doesnt mean anything because celiac disease can be in remission but may come back in full force at any time in my life. I just ignored her....

 

Now 32 years old, all of a sudden I developed severe anxiety, headaches and panic attacks all over again. The nightmare is back! I want to know if this may have to do with the celiac desease. I have absolutely no diarrhea. And very rarely do I have any stomach ache or anything like that. There is no particularly foul smelling stool or most of the symtoms of celiac desease commonly listed. In your opinion, is it possible that I am still gluten intolerant?

 

 

For those that do not like to read a lot, here's a summary question:

 

"Is it possible for me to have celiac desease if gastroscopy says I am negative, but 3 blood tests over 3 years say I am positive?" (I do not have any diarrhea.)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Traumatic events or onerous circumstance (not that the two are immiscible, of course) can very well instigate anxiety or induce a resurgence of formerly abated chronic anxiety after a period of remission. Anxiety itself impels a veritable mélange of symptoms and side-effects, neither the least of these being gastrointestinal distress nor panic attacks. Now, regarding the possibility of Celiac disease, not that I'd rule it out entirely, but it is possible you could be gluten-intolerant and not necessarily exhibit the complete spectrum of Celiac-causal symptoms. I wanted to post some links to a couple of articles, the first a short piece by one of this site's contributors about gluten-sensitivity without Celiac, and the second about the several tests conducted during blood panels, and what they look for, which could be pertinent if'n you're privy to the details of your test results, but either I'm just ignorant to how to use IP.Board's software, or it just doesn't play nice with my browsers.

 

In any case, you can find the first article about gluten sensitivity (titled "Gluten Sensitivity Without Celiac Disease") by just using this site's search bar from the front page (it should be toward the bottom of the search results page), keywords "without, celiac", sans the quotations and the comma. It uses a thumbnail of a loaf of bread. Now, just above that article on the search results page, there is also a thread on this forum started by a member named "not4sakn" titled gluten intolerance without your "typical" stomach symptoms, perhaps also relevant to your interests.

0

Share this post


Link to post
Share on other sites

Please bear with me if I say more than I should have mentioned, I tend to write a lot:

 

I have been suffering with severe anxiety, panic attacks and horrible headaches for most of my life. When I was about 15 years old, my gastroenterologist said I have celiac desease because my blood test showed highly elevated levels of whatever it is that shows doctors someone is positive for it. 

Me and my parents thought it was nonesense. A disease where you cannot eat bread? We never heard of that. Bread is life. Bread is what saved many people throughout history during wars and famine. All I eat is bread! Every day it's spagetti, bread, bagels, burgers, hot dogs, wheat cereals, wheat porrage, farina, and so on and so forth. I hate most meat, fish, poultry, and milk products. Even when I have meat fish or whatever, I must have it with huge quantities of bread to "not feel the meat".

 

Anyway, in between severe diarrhea and horrible anxiety attacks, I got scared and lived gluten free for about a month. I bought rice cakes in a health food store, potato pasta, and other things like that. I noticed that my anxiety isn't getting any better, and after I got a CAT scan and realized I dont have a tumor, my diarrhea magically stopped. I continued suffering with anxiety and headaches, but went back to eating tons of wheat products because I was sick and tired of gluten free diet. When I was something like 17 years old, I had an endoscopy done, specifically aimed at taking a sample of my insides to test for celiac desease. The test came back negative! But my doctor said that it would be nice to do another test to check the intestines where they go from the rear, not from the front if you know what I mean... I refused because I was terrified, having experienced anestesia for the first time in my life during the endoscopy and the overall experience was horrifying for me. Doctor did not press me - he said most likely i DO NOT have celiac disease anyway.

 

 After many years of suffering, somehow my headaches and anxiety subsided and I returned to normal life. I didn't do anything to make it so. I just suddenly became better after an 11 year nightmare. I lived for 7 years, mostly headache and anxiety free and ate tons of wheat products, but my GP, every year consistently told me that each of my blood tests are coming back positive for celiac sprue colitis. I asked her, why is it then that I am eating bread, pasta, etc, and I am fine?! She said it doesnt mean anything because celiac disease can be in remission but may come back in full force at any time in my life. I just ignored her....

 

Now 32 years old, all of a sudden I developed severe anxiety, headaches and panic attacks all over again. The nightmare is back! I want to know if this may have to do with the celiac desease. I have absolutely no diarrhea. And very rarely do I have any stomach ache or anything like that. There is no particularly foul smelling stool or most of the symtoms of celiac desease commonly listed. In your opinion, is it possible that I am still gluten intolerant?

 

 

For those that do not like to read a lot, here's a summary question:

 

"Is it possible for me to have celiac desease if gastroscopy says I am negative, but 3 blood tests over 3 years say I am positive?" (I do not have any diarrhea.)

 

 

How long ago was the endoscopy?  How many samples did the doctor take?  You have about 20 feet of small intestine, it is easy to miss the damaged parts.

 

Get copies of your blood work and your endo/pathology.  If its been a few years and you are still eating gluten, you could get all this re-tested.  IF you have Celiac disease and continue to eat gluten, you are harming yourself.  

 

 

Traumatic events or onerous circumstance (not that the two are immiscible, of course) can very well instigate anxiety or induce a resurgence of formerly abated chronic anxiety after a period of remission. Anxiety itself impels a veritable mélange of symptoms and side-effects, neither the least of these being gastrointestinal distress nor panic attacks. Now, regarding the possibility of Celiac disease, not that I'd rule it out entirely, but it is possible you could be gluten-intolerant and not necessarily exhibit the complete spectrum of Celiac-causal symptoms. I wanted to post some links to a couple of articles, the first a short piece by one of this site's contributors about gluten-sensitivity without Celiac, and the second about the several tests conducted during blood panels, and what they look for, which could be pertinent if'n you're privy to the details of your test results, but either I'm just ignorant to how to use IP.Board's software, or it just doesn't play nice with my browsers.

 

In any case, you can find the first article about gluten sensitivity (titled "Gluten Sensitivity Without Celiac Disease") by just using this site's search bar from the front page (it should be toward the bottom of the search results page), keywords "without, celiac", sans the quotations and the comma. It uses a thumbnail of a loaf of bread. Now, just above that article on the search results page, there is also a thread on this forum started by a member named "not4sakn" titled gluten intolerance without your "typical" stomach symptoms, perhaps also relevant to your interests.

 

 

I am guessing you did well on the vocabulary portion of the ACT!   :D

0

Share this post


Link to post
Share on other sites

For those that do not like to read a lot, here's a summary question:

 

"Is it possible for me to have celiac desease if gastroscopy says I am negative, but 3 blood tests over 3 years say I am positive?" (I do not have any diarrhea.)

 

Just wanted to add that it is common to have a negative biopsy because the inflammation and damage can be spotty and easily missed.  Also, many Celiacs do not have GI symptoms.  I did not have any symptoms at all and only got tested because Celiac runs in the family.  My blood work was positive and the biopsy showed moderate to severe villi damage.  So don't think that just because you don't have diarrhea that it is any less likely that you have Celiac.

0

Share this post


Link to post
Share on other sites

Hi Ibex,

 

Welcome to the forum! :)

 

Here a list of the celiac disease antibody tests.  You  can ask your doctor for a copy of your blood tests and post them here.  Some people may have opinions on the tests.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

What KarenG said is right, there is a lot of surface area to check in the small intestine, and 20 to 22 feet of length.  But the endoscope probes can only reach the first 5 feet or so of the small intestine.  So that leaves about 15 to 17 feet of unexplored and untested gut that could be damaged and inflamed for all you or your doctor know.  Just because you can't reach it to test it, doesn't mean there isn't a problem right?

 

When a person doesn't have digestive symptoms but still has celiac it's called silent celiac.  There also many other symptoms besides digestive symptoms that may occur first.  Gluten ataxia, joint pain, hair loss, skin rash (DH or dermatitis herpetiformis) are just a few.  There are 300 possible symptoms of celiac disease and most are not digestive symptoms.

0

Share this post


Link to post
Share on other sites




How long ago was the endoscopy?  How many samples did the doctor take?  You have about 20 feet of small intestine, it is easy to miss the damaged parts.

 

Get copies of your blood work and your endo/pathology.  If its been a few years and you are still eating gluten, you could get all this re-tested.  IF you have Celiac disease and continue to eat gluten, you are harming yourself.  

 

 

 

 

I am guessing you did well on the vocabulary portion of the ACT!   :D

My endoscopy was when I was around 17 years old, and I'm 32 now. I am not sure how many samples the doctor took, but I am scared of another endo, because I am scared I'll never wake up after anesthesia. (a completely irrational fear)

 

Either way, lets say I go on a gluten free diet right now. How long does it usually take for symptoms to start decreasing? (if they are indeed due to celiac disease)

0

Share this post


Link to post
Share on other sites

My endoscopy was when I was around 17 years old, and I'm 32 now. I am not sure how many samples the doctor took, but I am scared of another endo, because I am scared I'll never wake up after anesthesia. (a completely irrational fear)

 

Either way, lets say I go on a gluten free diet right now. How long does it usually take for symptoms to start decreasing? (if they are indeed due to celiac disease)

 

 

You would need a new one to get diagnosed anyway.  Maybe you didn't have Celiac then but you could have it now.

0

Share this post


Link to post
Share on other sites

My endoscopy was when I was around 17 years old, and I'm 32 now. I am not sure how many samples the doctor took, but I am scared of another endo, because I am scared I'll never wake up after anesthesia. (a completely irrational fear)

 

Either way, lets say I go on a gluten free diet right now. How long does it usually take for symptoms to start decreasing? (if they are indeed due to celiac disease)

I agree with Kareng; if you could bear with it, a fresh endoscopy may yield new results, and would serve a better prompt to such a tremendous lifestyle change than just a notion and leap of faith (despite your blood tests). Now, you could certainly go cold turkey on gluten, as it were, and forego it for a trial period (that's the one silver lining about Celiac), to discover for yourself if you are, in fact, gluten-intolerant. Results are best described as subjective and dependent on the severity -- and your perception -- of your symptoms; I'm wary of presenting even ballpark estimates or certitudes because that can frontload you with false assurance or confidence in any advice proffered without some pellucid medical weight to it. If you have Celiac you might experience some gastrointestinal relief, with neurological symptoms perhaps subsiding later, but it could be weeks, it could be months. You could experience minor, immediate relief, or it could be awhile; as with most changes health related, it's best to temper high hopes with modest expectations.

 

I'm certain there are many Celiac sufferers here and throughout the internet with sundry ranges and degrees of relief that could assuage any uncertainty you have, but it would be reassuring to you, I think, should you choose to go through with the trial, if you consulted with your doctor first. If he's supportive or at least apathetic but sees no harm about the experiment, you could definitely have a go with it, for at least a few months. Worst case scenario (with your doctor's approval), you'll find out the gluten-free lifestyle isn't worth undertaking (as in, it presents neither positive nor negative medical ramifications), and that isn't necessarily in itself a bad thing.

0

Share this post


Link to post
Share on other sites

 

Either way, lets say I go on a gluten free diet right now. How long does it usually take for symptoms to start decreasing? (if they are indeed due to celiac disease)

 

I think most people notice some symptom improvement within days, like bloating or stomach aches, but other symptoms may need weeks, months (most common) or years to get better. Symptoms like nerve pain, ataxia, or cognitive issues seem to take the longest to improve. Problems like D or C seem to take a few months to improve. It really varies from person to person .

 

Also, some will experience a withdrawal for a week or so which can make for you even worse for a short time.  If you are going gluten-free, it is often advised to go gluten-free for a good 6 months before you judge it's effectiveness. I can attest to that.

 

My symptoms would come and go too, especially my arthralgias. My joint were very painful for weeks at a time but I could go months without a flare-up. My last bad flare-up was after I had been gluten-free for a few months, and I had a very mild one this winter. The frequency is getting though, hopefully that will happen for you too.

 

I would suggest talking to your doctor about this before going gluten-free though. If you test after going gluten-free, the results will not be accurate or you will need to go through 8-12 weeks of consuming gluten for accurate tests.  Seeing a doctor now could sae you some problems later on.

 

Best wishes in whatever you decide to do.

0

Share this post


Link to post
Share on other sites

 but I am scared of another endo, because I am scared I'll never wake up after anesthesia. (a completely irrational fear)

 

 

If it makes you feel any better, they don't use general anesthesia for an endoscopy.  It is an IV sedation.  So for example, you're still breathing on your own.  And the wake-up process is really quick.

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
      103,609
    • Total Posts
      918,338
  • Topics

  • Posts

    • A good diet for avoiding type 2 diabetes
      Hi cristiana, The paleo diet and the ketogenic diet would probably be helpful to read up on.  Snack on protein, not sugar and carbs.  You should have protein with every meal.  Protein reduces the meal total glycemic index and lengthens the time before you feel hungry again.   Sugar and carbs shorten the time to feeling hungry again. Or you could just ignore the whole thing and eat lots of sugary foods and carbs like my brother does.  And go half blind and have joint pain and nerve pain.  Those sugary snacks are a poor trade for your health.  
    • A good diet for avoiding type 2 diabetes
      Hi everyone.  There is a lot in the press here in the UK about prediabetes and diabetes.  I am an apple shape, as opposed to a pear, which I gather puts me more at risk.  I have a lot of relatives with types 1 and 2 diabetes.  I was diagnosed with celiac disease three years ago and the diet has been going so well that I am now putting on weight - I realise I have been eating far too many nice goodies from the Gluten Free Cake Aisle at Marks & Spencers, etc.   I had a bit of a shock this week as I have been very thirsty and as per usual started panicking so instead of doing that my neighbour encouraged me to see my doctor.  Good plan. The preliminary tests show no sugar in my urine; my blood glucose was high normal but I had just eaten.  She is sending me off for one of those HbaIC tests I think it is called just to be sure but she says she thinks I will be fine.  But to cut a long story short, I realise I have got to sort out this sweet tooth of mine. Wake up time! But I am confused. I have been searching a lot on line and there seems to be such contradictory information.  Only this week there was a news item on the BBC about the argument for fewer carbs/full fat - and then Public Health England disputing it.  Then, to go back to the original argument, the BBC filmed a chap at the doctors who had cut his carbs and ate full fat (as well as healthy fruit & veg) and he had lost weight and come off his diabetes meds. http://www.bbc.co.uk/news/health-36345768 I'm thinking prevention is better than cure so I wanted to know, can anyone recommend a website or book that sets out a sensible eating plan, tried and tested, that they have discovered.    Or just any tips?  And I should say - I do get hungry between meals and for many years have suffered from the shakes when I don't eat enough - what is good food to eat for snacking?
    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • 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
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined