Blood Test Says Positive, But Endoscopy Says Negative!

[ibex333]

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.)

[HappeningWhen]

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.

[kareng]

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!  

[NoGlutenCooties]

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.

[GFinDC]

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.

[ibex333]

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!  

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)

[kareng]

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.

[HappeningWhen]

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.

[nvsmom]

 

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.

[NoGlutenCooties]

 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.