Confused: Endoscopy Negative, Impossible To Be Gluten Intolerant?

[VitaminDGirl]

Ok. Here I am again.

Suffered through the biopsy yesterday. Dr. said I'm not celiac.

So...

I went through all of that because I had a high positive on

a saliva test for anti-gliadin autoantibodies.

I did all the bloodwork--all was negative.

But because I read here that there can be 20% chance i still could have it, I did the biopsy.

So, now I'm wondering, is it possible to be gluten intolerant and not celiac? or is the saliva test just that wrong? I mean, I guess I'm confused about if gluten gets past the small intestines fine and the villi are happy, is there really a good reason to come off the gluten?

I am in pain for some unresolved medical diagnosis and that's how I 'hit' this avenue.

Has anyone been told through biopsy and blood "no celiac' and yet still had pain relief coming off the gluten?

(I have painful feet, legs, back--hard to walk very far and I'm 35 and not overweight)

Thanks so much.

Any direction on links or forums to help me with this would be great if it's too much to answer...

I tried a google search, but I'm still lost.

ps GI dr. said there is no reason for me to come off gluten since my villi look good. However, because I have that high positive on the saliva test, I'm questioning his opinion...

[sa1937]

Ok. Here I am again.

Suffered through the biopsy yesterday. Dr. said I'm not celiac.

So...

I went through all of that because I had a high positive on

a saliva test for anti-gliadin autoantibodies.

I did all the bloodwork--all was negative.

But because I read here that there can be 20% chance i still could have it, I did the biopsy.

So, now I'm wondering, is it possible to be gluten intolerant and not celiac? or is the saliva test just that wrong? I mean, I guess I'm confused about if gluten gets past the small intestines fine and the villi are happy, is there really a good reason to come off the gluten?

I am in pain for some unresolved medical diagnosis and that's how I 'hit' this avenue.

Has anyone been told through biopsy and blood "no celiac' and yet still had pain relief coming off the gluten?

(I have painful feet, legs, back--hard to walk very far and I'm 35 and not overweight)

Thanks so much.

Any direction on links or forums to help me with this would be great if it's too much to answer...

I tried a google search, but I'm still lost.

ps GI dr. said there is no reason for me to come off gluten since my villi look good. However, because I have that high positive on the saliva test, I'm questioning his opinion...

I'm probably not the one to answer this, but hopefully he did a number of biopsies for which you'll probably not get the results for about a week???

From what I've read here, going on a strictly gluten free diet may give you the answer before you get the official biopsy results (I'm going on the premise that he did biopsies). False negatives are not unheard of with either a celiac test or endoscopy. At any rate since your endoscopy is finished, there's nothing from stopping you from going gluten free and giving it two to three months to see how you feel. Hope you feel better soon!

[Skylark]

There is a condition called non-celiac gluten intolerance where you are negative on the tests but still don't tolerate gluten. Sometimes people will show positive for anti-gliadin IgA in their stools or saliva as a clue. I saw one GI paper mentioning that some people who are not celiac feel better on the gluten-free diet. Some doctors are aware of this too. The only way to figure it out is to try the diet strictly for a while. There is no harm going gluten-free, as long as you don't pig out on starchy gluten-free goodies.

By the way, it's great news that there is not a lot of damage or antibodies.

[Rowena]

Ok. Here I am again.

Suffered through the biopsy yesterday. Dr. said I'm not celiac.

So...

I went through all of that because I had a high positive on

a saliva test for anti-gliadin autoantibodies.

I did all the bloodwork--all was negative.

But because I read here that there can be 20% chance i still could have it, I did the biopsy.

So, now I'm wondering, is it possible to be gluten intolerant and not celiac? or is the saliva test just that wrong? I mean, I guess I'm confused about if gluten gets past the small intestines fine and the villi are happy, is there really a good reason to come off the gluten?

I am in pain for some unresolved medical diagnosis and that's how I 'hit' this avenue.

Has anyone been told through biopsy and blood "no celiac' and yet still had pain relief coming off the gluten?

(I have painful feet, legs, back--hard to walk very far and I'm 35 and not overweight)

Thanks so much.

Any direction on links or forums to help me with this would be great if it's too much to answer...

I tried a google search, but I'm still lost.

ps GI dr. said there is no reason for me to come off gluten since my villi look good. However, because I have that high positive on the saliva test, I'm questioning his opinion...

Yes it is possible to be gluten intolerant and not show any visible results. The problem is most tests are for "allergies" which have a different effect on the body than intolerances. Allergies actually change things in our bodies, whereas intolerances are just that our body just don't like em and spits it right back out in some way or another. Like for example, I am highly intolerant to fish and seafood, but that wouldn't show up in any test, but my family would be the first to tell you that yes I have a bad response to it, as evidenced by the fact of the fish coming right back out the way it came.

For the record, I am also a gluten intolerant, but negative for celiac disease. Fortunately I have been lucky to have a good doctor, (first one in a long time who knew what she was doing) and she agrees that if I feel better on the diet, then continue with it. She told me that it is possible that you can be intolerant and not show up as a celiac.

[kpryan]

Yes you can definitely be gluten intolerant...have you gone gluten free yet before your tests? If so how long did you eat gluten again before the tests?

That can affect how accurate your results are as there are many differing opinions on how long and how much you should be eating gluten prior to being tested.

This guy has a great book that goes into gluten intolerance as well as celiac...and as a lot of info on testing for intolerances. Dr Steven Wangen...if you google him, you'll see his info.

I am willing to bet that I'll be in the same boat as you soon. I've been gluten free for about 2 years and went on a gluten challenge for 1 month to be tested and have a biopsy. I have it next week. I'm hoping for some sort of answer at least....

Good luck! Bottom line...if you feel better off gluten, then do it!

Ok. Here I am again.

Suffered through the biopsy yesterday. Dr. said I'm not celiac.

So...

I went through all of that because I had a high positive on

a saliva test for anti-gliadin autoantibodies.

I did all the bloodwork--all was negative.

But because I read here that there can be 20% chance i still could have it, I did the biopsy.

So, now I'm wondering, is it possible to be gluten intolerant and not celiac? or is the saliva test just that wrong? I mean, I guess I'm confused about if gluten gets past the small intestines fine and the villi are happy, is there really a good reason to come off the gluten?

I am in pain for some unresolved medical diagnosis and that's how I 'hit' this avenue.

Has anyone been told through biopsy and blood "no celiac' and yet still had pain relief coming off the gluten?

(I have painful feet, legs, back--hard to walk very far and I'm 35 and not overweight)

Thanks so much.

Any direction on links or forums to help me with this would be great if it's too much to answer...

I tried a google search, but I'm still lost.

ps GI dr. said there is no reason for me to come off gluten since my villi look good. However, because I have that high positive on the saliva test, I'm questioning his opinion...

[VitaminDGirl]

I'm probably not the one to answer this, but hopefully he did a number of biopsies for which you'll probably not get the results for about a week???

yes, he is sending off the biopsies, so I guess that will be the final say? I was too doped up after the procedure to ask all of these questions and my throat hurts too much to talk right now by calling to find out.

Thanks for you reply! So very much.

[VitaminDGirl]

There is a condition called non-celiac gluten intolerance where you are negative on the tests but still don't tolerate gluten. Sometimes people will show positive for anti-gliadin IgA in their stools or saliva as a clue. I saw one GI paper mentioning that some people who are not celiac feel better on the gluten-free diet. Some doctors are aware of this too. The only way to figure it out is to try the diet strictly for a while. There is no harm going gluten-free, as long as you don't pig out on starchy gluten-free goodies.

By the way, it's great news that there is not a lot of damage or antibodies.

Skylark to the rescue once again. Thank you!! This is wonderful encouragement to go off of gluten and see what happens. Thank you for sharing what you have read/researched. Helps newbie researchers like me!

[VitaminDGirl]

Yes you can definitely be gluten intolerant...have you gone gluten free yet before your tests? If so how long did you eat gluten again before the tests?

That can affect how accurate your results are as there are many differing opinions on how long and how much you should be eating gluten prior to being tested.

This guy has a great book that goes into gluten intolerance as well as celiac...and as a lot of info on testing for intolerances. Dr Steven Wangen...if you google him, you'll see his info.

I am willing to bet that I'll be in the same boat as you soon. I've been gluten free for about 2 years and went on a gluten challenge for 1 month to be tested and have a biopsy. I have it next week. I'm hoping for some sort of answer at least....

Good luck! Bottom line...if you feel better off gluten, then do it!

Thank you, I will look into that. I have not yet gone completely gluten free, so now is the time! I will give it a good try for a few months and see what happens.

I'm so thankful for a place like this to encourage me as I embark on this new 'adventure' of sorts Prayerfully my body will respond with happiness!

[VitaminDGirl]

I'm sorry you all that I haven't figured out how to quote several of you at once and reply, so that's why all of these seperate posts. Rowena, thanks for hearing my 'cry'. Glad to know another on this journey.

Yes it is possible to be gluten intolerant and not show any visible results. The problem is most tests are for "allergies" which have a different effect on the body than intolerances. Allergies actually change things in our bodies, whereas intolerances are just that our body just don't like em and spits it right back out in some way or another. Like for example, I am highly intolerant to fish and seafood, but that wouldn't show up in any test, but my family would be the first to tell you that yes I have a bad response to it, as evidenced by the fact of the fish coming right back out the way it came.

For the record, I am also a gluten intolerant, but negative for celiac disease. Fortunately I have been lucky to have a good doctor, (first one in a long time who knew what she was doing) and she agrees that if I feel better on the diet, then continue with it. She told me that it is possible that you can be intolerant and not show up as a celiac.

[mushroom]

I'm sorry you all that I haven't figured out how to quote several of you at once and reply, so that's why all of these seperate posts. Rowena, thanks for hearing my 'cry'. Glad to know another on this journey.

To put all the quotes in one post, just click the multiquote button for each post you want to reply to; then when you have selected all the posts, click the Add Reply button, and they will all pop up in the reply box

And just to add, possibly 25% of the posters on this forum have either tested negative or never been formally diagnosed by a doctor - we just don't eat gluten because it does bad things to us

[VitaminDGirl]

To put all the quotes in one post, just click the multiquote button for each post you want to reply to; then when you have selected all the posts, click the Add Reply button, and they will all pop up in the reply box

And just to add, possibly 25% of the posters on this forum have either tested negative or never been formally diagnosed by a doctor - we just don't eat gluten because it does bad things to us

Great! Thanks for the tip so that i don't drive people crazy here with all of the posts.

Also, thanks for the stats on the variety of types of gluten-freers! Excited to here (did I just say that? excited to be gluten free?). Well, excited to see the positive results with time and to have the support of you all! So great to know I'm not alone in this!

[ravenwoodglass]

Damage can be patchy and get missed on the endo. The scope only goes just so far and if your damage is in an area the scope can't reach or the damage is patchy and the damaged areas are not biopsied you can end up with a false negative. Now that your testing is finished go ahead and get started on a good strict trial of the diet. You body may give you the answer before you get back to hear the results.

[VitaminDGirl]

Damage can be patchy and get missed on the endo. The scope only goes just so far and if your damage is in an area the scope can't reach or the damage is patchy and the damaged areas are not biopsied you can end up with a false negative. Now that your testing is finished go ahead and get started on a good strict trial of the diet. You body may give you the answer before you get back to hear the results.

yay, Ravenwood. Thanks for the extra needed encouragement. Today was day 2 gluten free. yay!

I look forward to seeing what rewards my body may show me in a few months. Thanks for this info! Very much. I know I'll see you around here.

[Marz]

Hello and welcome

I'm yet another gluten intolerant that had negative bloodwork and biopsy, but all GI symptoms cleared up after going gluten free.

Gluten can definately cause pain (celiac disease definately associated with Rheumatoid Arthritis for one thing). I for one get random carpal tunnel/painful knees/severe pain in small foot bones etc when I'm accidently glutened, and the pain has nothing to do with repetitive injury/weight etc.

Keep at the gluten-free diet - some people notice improvement within a few days, others take a few weeks. With mainly pain symptoms, you might take a bit longer to see the difference?

Don't be surprised if you suddenly develop GI symptoms if you go back to gluten after a few weeks Sometimes eating gluten all the time pre-gluten-free suppresses your immune system, and when you go off gluten your immune system recovers. Then eating gluten again causes rapid and extreme reactions because now your system is healthy enough to react to it properly!

Some advice on your gluten-free diet - make sure it's 100% gluten free - the smallest amount can still keep the inflammation going. So ensure you cut out wheat, rye and barley, malt (found in Rice Krispies and other innocent-appear cereals), modified starch (may be derived off wheat) in processed foods, wheat flour in soups and stews to thicken the sauce etc. You may want to not eat out for a few weeks until you figure out what is "safe" to eat.

A good idea is to eat only whole, unprocessed foods for a few weeks - fruit, veges, dairy, nuts, eggs, meat, rice, potatoes and corn prepared in a gluten-free kitchen. Gluten free kitchen = don't share the toaster with glutenous breads, don't cut veges on cutting boards that have seen bread, plastic spoons and non-stick pans can have small amounts of gluten still stuck on them etc.

It does seem overwhelming at first, but just do your best and read as much as you can about it I found there was definately a learning curve, and as I managed to be more and more gluten free, I would start reacting to items I thought were "safe" but turned out to have trace amounts of gluten. Eliminating these last few culprits led me to feeling better and better.

Hoping for your good health and that you'll find a solution to your pain going gluten-free

[gfForLife]

I am in pain for some unresolved medical diagnosis and that's how I 'hit' this avenue.

Has anyone been told through biopsy and blood "no celiac' and yet still had pain relief coming off the gluten?

(I have painful feet, legs, back--hard to walk very far and I'm 35 and not overweight)

Thanks so much.

Any direction on links or forums to help me with this would be great if it's too much to answer...

I tried a google search, but I'm still lost.

ps GI dr. said there is no reason for me to come off gluten since my villi look good. However, because I have that high positive on the saliva test, I'm questioning his opinion...

Hi again. Good to hear that you're done with the endoscopy! Now that's out of the way and you can hopefully start healing on this diet. I also started researching this because of chronic pain I've had for almost 3 years now. It started at the end of my pregnancy with my twins and just never went away. I also have lower body pain. It is SEVERE in my hips sometimes and also in my lower back, legs, knees, and ankles. I have no clue what it is and only just started trying to figure it out with a doctor...maybe we have the same thing .

Do you have any other Gluten intolerance/Celiac symptoms or family history of autoimmune disorders that made you think you were at risk?

Like everyone else said, it's absolutely possible to be gluten intolerant or Celiac without positive tests or biopsy. I guess only time will tell. I'm hoping that this is the answer (for both of us)

I've been on the diet for 2 weeks and no improvement in pain but I did know beyond a shadow of a doubt that gluten does awful things to me digestion wise and I have a strong family history of autoimmune disease so even without positive tests I am staying the heck away from gluten