Can An Endoscopy Show Incorrect Result?/anxiety

[casi198920]

I hope this is the best place to post this topic.

I was diagnosed with Celiac disease when I was about 14. I had been suffering for a few years with stomach pains and had to take time of school for about a week every few months. I had a blood test and had a low iron count and my GP said I should go on a gluten free diet to see what happened and also referred me to a specialist. Well the specialist wanted to do an endoscopy so after having been on a gluten free diet for a few weeks told me to go back to eating gluten or he would not be able to tell the results. I was only eating gluten for a week before the procedure. I was diagnosed with Celiac disease.

Gradually I ate gluten little by little until now I am 21 and have been eating a normal diet for the past 3 years.

I don't really think I have symptoms of Celiac disease. I do not have really regular bowel movements. Normally only every 2 or 3 days but sometimes I am normal and sometimes get stomach aches but not really severely and I couldn't really say if it is that different to anyone else without Celiac just getting an occasional stomach ache.

Is it possible for me to have been misdiagnosed or is there literally no possibility of this with an endoscopy. I am thinking maybe because of the fact I was only eating gluten for a week before the test that there was a mistake? From what I know I believe there is no cure or chance of getting rid of a gluten intolerance.

The reason I am concerned now is that I have been suffering from anxiety for the last year and it is getting worse. I have been reading online that Celiac's not following a gluten free diet can experience anxiety. But I would really like to know if anyone who does not always follow a gluten free diet experiences anxiety and/or if it is possible to have had a misdiagnosis.

Thanks for your help.

[kareng]

Why don't you see if you can get a hold of your original labs for Celiac and the endoscopy path report and procedure report. If the endo was positive, you have Celiac and shouldn't be damaging yourself by eating gluten.

The antibodies can also give you anxiety and alot of other damage that will catch up with you.

You could get a blood test to see what the antibodies levels are, too.

I think the first step is to get the copies of the medical record and see if that proves the Celiac. Maybe that will be enough proff for you to stop the self-destructive behavior. You may need counselling to help you to understand why you want to hurt yourself.

[casi198920]

Why don't you see if you can get a hold of your original labs for Celiac and the endoscopy path report and procedure report. If the endo was positive, you have Celiac and shouldn't be damaging yourself by eating gluten.

The antibodies can also give you anxiety and alot of other damage that will catch up with you.

You could get a blood test to see what the antibodies levels are, too.

I think the first step is to get the copies of the medical record and see if that proves the Celiac. Maybe that will be enough proff for you to stop the self-destructive behavior. You may need counselling to help you to understand why you want to hurt yourself.

thanks for your reply but i think you have got the wrong end of the stick. I was never deliberately trying to hurt myself. I was just never properly educated on Celiac disease when i was first diagnose, so have not known the full repercussions that eating gluten can cause. Since I was not experiencing any symptoms and do not/did not know if I had a proper diagnosis I was just wondering if mis-diagnosis was possible due to only eating gluten for a week prior. It is only since experiencing anxiety that I have even thought about it all again and I probably should check into my results. This is not a self-destructive issue in any way. I even mentioned recently to my doctor (new doctor/new country) on a general visit that I had previously been diagnosed with Celiac but had been eating normally with no symptoms and she just laughed it off and said that it was odd so I have been getting mixed advice on the severity of it.

[kareng]

thanks for your reply but i think you have got the wrong end of the stick. I was never deliberately trying to hurt myself. I was just never properly educated on Celiac disease when i was first diagnose, so have not known the full repercussions that eating gluten can cause. Since I was not experiencing any symptoms and do not/did not know if I had a proper diagnosis I was just wondering if mis-diagnosis was possible due to only eating gluten for a week prior. It is only since experiencing anxiety that I have even thought about it all again and I probably should check into my results. This is not a self-destructive issue in any way. I even mentioned recently to my doctor (new doctor/new country) on a general visit that I had previously been diagnosed with Celiac but had been eating normally with no symptoms and she just laughed it off and said that it was odd so I have been getting mixed advice on the severity of it.

Ok.You're young. Your parents didn't get enough help when you were diagnosed, I guess. Many doctor's know nothing about Celiac. Try to get your previous results. Not all Celiac damage are stomach/bathroom issues.

Did the new doctor test your iron, B12, D, Etc? Low nutrients are a standard problem with untreated Celiacs. She should at least re-test your anti-bodies and itamin levels.

There is a lot of good info on this website including what blood test to get:

Open Original Shared Link

[casi198920]

Ok.You're young. Your parents didn't get enough help when you were diagnosed, I guess. Many doctor's know nothing about Celiac. Try to get your previous results. Not all Celiac damage are stomach/bathroom issues.

Did the new doctor test your iron, B12, D, Etc? Low nutrients are a standard problem with untreated Celiacs. She should at least re-test your anti-bodies and itamin levels.

There is a lot of good info on this website including what blood test to get:

Open Original Shared Link

I spoke to my parents and they say they do not have any kind of paperwork form the endoscopy/colonoscopy but that they were just told my villi were damaged which meant I had Celiac disease. Neither of us remember if an actual biopsy was taken but I presume it was if I saw a specialist.

I have not had any blood work done recently. I can arrange that. But I did have blood work (not sure about antibody tests) just a standard blood test when I was about 18 and had been eating part gluten free part gluten diet and was told everything was normal (iron/vitamins etc). Could this show anything?

[kareng]

Sounds like you had a very "helpful" doctor back then. I would get new blood tests for the iron, etc. They might have been fine 3 years ago, but if you have been damaging your intestines, they could be worse now.

In the upper right hand corner, there is a google search for this site. Put anxiety in & you will see a lot of posts about it it & how gluten seems to be responsible for it.

[T.H.]

If you were only eating gluten for a week before the endo, then yes, it can give incorrect results, but it would be results in the opposite direction. You might get a false negative, not a false positive, though. If there was villi damage, that's pretty damning for celiac disease. A few parasites can do that too, however, if I recall right. But it's still a pretty distinctive pattern of damage.

Symptom-wise, you still do seem to be having celiac symptoms, just not as severe. This change in symptoms is the same reason, as I understand it, that in the past doctors thought that you might be able to outgrow this. Many of us get worse symptoms to gluten after we go gluten free, but some don't. Children would be diagnosed positive for the disease, but then eat gluten a few years later and not feel too bad, so they were told they must have 'outgrown' it. And then years down the lines, when their bodies are utterly trashed, they get to find out that they still have the disease and they've done tremendous damage to themselves.

Honestly, this scenario is much more likely than you having been given a false positive. Especially as you have symptoms. Perhaps not the same ones that you did before, but still symptoms.

Non-regular bowel movements, some stomach aches. So sorry to say this but...that's not normal. And if this seems normal for your family? Well, you got the genes from somewhere, right? If the doc never recommended your parents and siblings get tested (which doc weren't as aware of, years ago), they really should. there's a very good chance that they have it, or that they will have it. They should be tested every 5 years for this, at least.

And there is silent celiac disease - which is on the rise - which shows no symptoms at all until your body is so screwed up there's no coming back from it. My dad had this. He was hugely athletic his whole life, no troubles as far as he could tell, and then by the time he hit his mid-forties he was barely able to get around, using a cane because the disease totally destroyed his spine and his joints.

And no one could tell until it was too late. It's one of the reasons this darn disease is so hard to cope with, because it's touted so often as a gut disease only, but it affects everything (because everything needs nutrients). And while it feels like nothing bad is happening, that doesn't mean it's true, you know?

Anxiety is very much a problem with gluten, for some. So are sleep issues. Whenever my daughter gets glutened, her anxiety comes roaring back, in spades. Some other non-gut problems that can be difficult dealing with are irritation, sounds or sights being too loud or too bright, hard to fall asleep and/or hard to wake up, difficulty remembering things, ADHD type behavior, depression, getting injured easily, or getting sick a lot (little things, like colds and such), taking a long time to heal from injury or sickness.

This isn't what everyone gets, but I've seen all of these in various people. It all boils down to what nutrients you are digesting, and what ones you aren't. It's not the same for everyone, unfortunately. So if it's things like tryptophan that are low, then you have more emotional and sleep troubles. If you are low on other vitamins it's skin issues, other vitamins affect building your bones and muscles (hence the injuries), other ones keep your immune system working well.

It makes it hard to diagnose celiac disease, often, because there are so many vague symptoms that don't seem related, but turn out to be.

If you feel like you need a test to be sure, I'd get one. If you feel like you'd rather just go gluten free because you already had a test, I'd do that, although it sounds like you'd prefer to get a test now so that you know.

[mushroom]

From your posts it does sound like you had a positive blood test and positive biopsy for celiac disease if your specialist did a "procedure". The fact that you had been gluten free and then went back to eating gluten for only one week before the "procedure" would be more likely to lead to a false negative than a false positive since reglutening generally takes a lot longer. I would say it would represent that you had significant damage that he still found it several weeks?? after you went gluten free. False positives are extremely rare; false negatives are unfortunately common.

We can have a period of time when gluten does not seem to be affecting us in our teens and early 20's, a kind of gluten "holiday". It does not mean that gluten is not harming us, just that we are not aware of any symptoms. I know I did, having suffered undiagnosed as a child. And then later as an adult. And the harm I ended up with was psoriatic arthritis (a combination of psoriasis and rheumatoid arthritis).

A diagnosis of celiac disease should be taken seriously and the diet strictly followed if you want to avoid some of the more nasty repercussions of eating gluten.

And yes, so many people complain of anxiety as a symptom of gluten.

[casi198920]

From your posts it does sound like you had a positive blood test and positive biopsy for celiac disease if your specialist did a "procedure". The fact that you had been gluten free and then went back to eating gluten for only one week before the "procedure" would be more likely to lead to a false negative than a false positive since reglutening generally takes a lot longer. I would say it would represent that you had significant damage that he still found it several weeks?? after you went gluten free. False positives are extremely rare; false negatives are unfortunately common.

We can have a period of time when gluten does not seem to be affecting us in our teens and early 20's, a kind of gluten "holiday". It does not mean that gluten is not harming us, just that we are not aware of any symptoms. I know I did, having suffered undiagnosed as a child. And then later as an adult. And the harm I ended up with was psoriatic arthritis (a combination of psoriasis and rheumatoid arthritis).

A diagnosis of celiac disease should be taken seriously and the diet strictly followed if you want to avoid some of the more nasty repercussions of eating gluten.

And yes, so many people complain of anxiety as a symptom of gluten.

thanks everyone. I am going to go gluten free then. Does anyone know where I can get a full list/book of allowed foods including specific brand items? Also is oatmeal fine. I seem to remember it is not but I might be wrong. I mostly have Quaker 1 minute kind.

[ravenwoodglass]

thanks everyone. I am going to go gluten free then. Does anyone know where I can get a full list/book of allowed foods including specific brand items? Also is oatmeal fine. I seem to remember it is not but I might be wrong. I mostly have Quaker 1 minute kind.

Glad to hear you are going back to the diet. If you go to the home page here-

https://www.celiac.com/

You will see a box with allowed and not allowed foods and some other subjects. That will be helpful.

Some of us do tolerate certified gluten free oats but some of us will get a gluten reaction. Wait until you have healed well and then try some daily for a week. If you have a reaction then stop sooner. Sometimes reactions can be delayed so it might not make you feel ill right after you eat it.

Quaker Oats are not safe. You want one like Bob's Red Mill with the gluten free label. If you like hot cereals you might also want to try Cream of Buckwheat. It has a good easily digestable amount of protein and is very much like Cream of Wheat.

Do read as much here as you can to make sure that you know all you need to know to keep you safe.