Negative Endoscopy - Fooling Self?

[skinnyasparagus]

I had an endoscopy a few weeks ago and an additional blood test. I received my results today and everything is negative. The doctor wishes to proceed with a colonoscopy but I don't know.

If everything is negative, does that mean I don't have celiac's disease or the sprue? I've been living gluten free for 9 months now and I just feel as if everything's a joke. Everything was better from what it has been. I have more energy, I feel more active, but..are my reactions mental? I still get stomach pains, I still feel snaps in my stomach that I know aren't mental, I break out in minor hives every once in a while, I get D and C, heartburn, and I'm unable to maintain my weight.

I'm lactose free so I know its not dairy.

If its not celiac's disease, what is it? What will a colonoscopy prove? Should I proceed with it or just let it go and stick to what I know I feel is right? I just don't know if so many negatives mean that I can still have celiac's disease, even if the doctor can't find anything.

I've done all levels of blood testing and an endoscopy with biopsies of the stomach and small. No bacteria was found either.

I guess..I just need help and advice. Am I crazy? Am I mental? What should I do now?

[psawyer]

Your sig says you have been gluten-free for more than nine months. At this point, even if you do have celiac, the tests would likely be negative. It doesn't mean you don't have celiac, what it does mean is that you are successfully following the diet.

The colonoscopy can reveal other conditions which may be causing symptoms, but will not tell anything about celiac disease.

[Lisa]

I had an endoscopy a few weeks ago and an additional blood test. I received my results today and everything is negative. The doctor wishes to proceed with a colonoscopy but I don't know.

If everything is negative, does that mean I don't have celiac's disease or the sprue? I've been living gluten free for 9 months now and I just feel as if everything's a joke. Everything was better from what it has been. I have more energy, I feel more active, but..are my reactions mental? I still get stomach pains, I still feel snaps in my stomach that I know aren't mental, I break out in minor hives every once in a while, I get D and C, heartburn, and I'm unable to maintain my weight.

I'm lactose free so I know its not dairy.

If its not celiac's disease, what is it? What will a colonoscopy prove? Should I proceed with it or just let it go and stick to what I know I feel is right? I just don't know if so many negatives mean that I can still have celiac's disease, even if the doctor can't find anything.

I've done all levels of blood testing and an endoscopy with biopsies of the stomach and small. No bacteria was found either.

I guess..I just need help and advice. Am I crazy? Am I mental? What should I do now?

After nine months gluten free, it's not unusual for negative testing. You may not be able to get a diagnoses due to the fact that you are off gluten, but it might be fair to say that you have at the least a gluten intolerance and/or gluten allergy, as indicated by your occasional symptoms. Be careful about your diet and make sure no gluten is surprizing.

Anytime your have digestive issues, it's a good rule to have both an endoscopy and colonoscopy to rule out more serious issues.

[sbj]

Am I crazy? Am I mental? What should I do now?

You are not crazy and you are not mental! If you had positive bloodwork and positive biopsy nine months ago, and now they are normal, then these problems are not due to celiac. If you did not have positive bloodwork or biopsy nine months ago then it is possible that you never had celiac to begin with. (That's why it's a good idea to get a biopsy before going gluten-free - you won't ever wonder whether you really have it if problems arise later.)

Either way, since your biopsy looks okay it is likely that these symptoms are not due to celiac but are due to something else. Other than celiac, your abdominal pain might be due to any of the following:

• appendicitis
  
• blockage of a bile duct by gallstones
  
• swelling of the liver with hepatitis
  
• diverticulitis
  
• colitis
  
• obstruction of the intestine
  
• ischemic colitis
  
• irritable bowel syndrome
  

What matters now is getting you well. Don't stick with what you 'know is right' if you are still suffering - you don't have to suffer. Your doctor believes you are in distress and that's why s/he is recommending a colonoscopy; a colonoscopy is warranted when someone is sufering from abdominal pain like you are. I suggest you get the colonoscopy - better safe than sorry!

[happygirl]

In the latest issue of the magazine, Living Without, there is an interview with Dr. Peter Green of Columbia.

He states,

".....Some people may feel better on a gluten free diet. If they dont' test positive for celiac disease, they may still be gluten sensitive. They may feel better by avoiding gluten, or just wheat....."

Q: Is the line between Celiac Disease and gluten sensitivity kind of fuzzy?

"In a way. Celiac Disease and gluten sensitivity are distinct conditions. But we don't yet have a mechanism to explain gluten sensitivity. We can't define it."

[Fiddle-Faddle]

You say you know your problems are not dairy because you are lactose-free?

I'm sorry, but many people with dairy problems react to the CASEIN, not the lactose. You need to be dairy-free, not lactose-free to be sure that your problems are not dairy. And if you had villi damaged from celiac/gluten intolerance, the villi might not heal completely if you are sensitive to casein and are still consuming dairy.

sbj, I believe you are incorrect--if she had positive bloodwork and biopsy 9 months ago, and now the tests are negative, her problems COULD still be from celiac. Depending on the amount of damage, and depending on other food intolerances (like dairy) might still be going on, she might not have completely healed--and if the doctor didn't HAPPEN to test damaged patches, he might have missed them, as they are not always easily visible.

Sometimes damage from gluten doesn't heal until OTHER foods (either those to which the patient is sensitive, or eating too many gluten-free bread substitutes, which are difficult to digest) are removed from the diet.

As far as saying that she may never had celiac--I suppose that could be true, but YOU don't know. Nobody knows. There are false negatives, but false positives are practically unheard of. It is more likely that she does have either celiac, or gluten intolerance (perhaps early stage celiac), especially as her symptoms mostly improved on the gluten-free diet.

However, your list of other conditions are well worth looking into.

[Lisa]

if she had positive bloodwork and biopsy 9 months ago,

sorry, never mind. .... I was just going to say, that skinnyasparagus did not mention what specific testing she had which prompted her to go gluten free nine months ago.

[skinnyasparagus]

sbj - I am deciding to go through with the colonoscopy since I came this far and might as well go the remainder of the way, even if it isn't related to diagnosing celiac's disease. If it isn't celiac's, maybe something else can be found.

Fiddle-Faddle - I do also look out for the casein, not just lactose. In my mental thinking of lactose I automatically sync it with casein. I know its incorrect but that's how I connect it when I explain it to other people.

Momma Goose - I know way back when I first started testing, my bloodwork came back with really elevated IgAs. This time, everything was really low. They only gave me an ultrasound at the time, which didn't show anything..because they normally are quite inaccurate. I didn't have any major testing done because at the time I had a very poor skilled doctor who thought I was a lunatic, which explains my paranoia about thinking I'm crazy..which I know for a fact pain is real.

I'm going to go a test when I have time this weekend to eat a half of a slice of bread to see my reaction. If I feel immediate pain like I did the first time when I went gluten free (I made a sandwich for my grandmother, didn't wash my hands, and ate my own which was gluten-free - seconds later I was wraithing in pain on the floor) then I know for fact that I have at least a gluten intolerance. It's not that I WANT celiac's disease, I just want to know what's wrong with me.

[Fiddle-Faddle]

Hi, Skinnyasparagus,

Elevated gluten-specific IgA is considered a positive diagnosis for celiac--you are not a lunatic!!!!!

And, as explained above, the reason all your recent tests were negative is that they were testing (again) for antibodies to gluten. If you have been gluten-free since January, you absolutely should not be making antibodies for gluten. SO these test results do not mean that you don't have celiac. They mean that you have been really good about the gluten-free diet!

(They also mean that your doctor is an idiot, if he thinks it means that you don't have celiac--NOBODY, celiac or non-celiac, produces antibodies to a substance they are not exposed to!)

A friend of mine thought that she was eating dairy-free because she was very careful to buy rice cheese and soy cheese substitutes--they tasted terrible and they all said, "lactose-free!" in big, proud letters.

What she didn't realize (for several months!) was that those substitutes contained casein. Not all of the ones available contain casein, but every single one at the health food section of our grocery store (Giant Eagle) contained casein (which she figured out when she got a magnifying glass and looked at the ingredients and saw "casein.")

YOU ARE NOT CRAZY> YOU ARE NOT PARANOID> YOU ARE NOT A LUNATIC.

Welcome aboard!

Needless to say, she was really annoyed!

[skinnyasparagus]

Hi, Skinnyasparagus,

Elevated gluten-specific IgA is considered a positive diagnosis for celiac--you are not a lunatic!!!!!

And, as explained above, the reason all your recent tests were negative is that they were testing (again) for antibodies to gluten. If you have been gluten-free since January, you absolutely should not be making antibodies for gluten. SO these test results do not mean that you don't have celiac. They mean that you have been really good about the gluten-free diet!

(They also mean that your doctor is an idiot, if he thinks it means that you don't have celiac--NOBODY, celiac or non-celiac, produces antibodies to a substance they are not exposed to!)

A friend of mine thought that she was eating dairy-free because she was very careful to buy rice cheese and soy cheese substitutes--they tasted terrible and they all said, "lactose-free!" in big, proud letters.

What she didn't realize (for several months!) was that those substitutes contained casein. Not all of the ones available contain casein, but every single one at the health food section of our grocery store (Giant Eagle) contained casein (which she figured out when she got a magnifying glass and looked at the ingredients and saw "casein.")

YOU ARE NOT CRAZY> YOU ARE NOT PARANOID> YOU ARE NOT A LUNATIC.

Welcome aboard!

Needless to say, she was really annoyed!

Ah! I know! I hate that rice cheese. I can't have soy either in large dosages so the soy cheese, on a standard, isn't good. Then I noticed the "dairy free" rice cheeses that melt like rubber still have trace lactose and milk enzymes. What the heck, you know? But the one issue I have is just that I know I saw high IgAs but I can't get a hold of my primary bloodtest since my first physician office was in Philadelphia, PA and I'm now in Concord, VA.

But at least I have some consolodation, thanks everyone. I know it was obvious but sometimes you get frustrated when you become the guinea pig.

[sbj]

Glad to hear you are going ahead with the colonoscopy. I think it will help bring you peace of mind. I hope everything comes out swell and you get some answers. Please write again to tell us how things go. BTW: If you have any questions about colonoscopies just ask away. I get one every year. They're not fun but they could save your life. They found some polyps during my last and that's actually a good thing. If they find them early they can be removed and they won't progress to cancer.

Regarding your bloodwork and celiac disease. If you tested elevated before and now you are low it means that you are doing a good job following the diet. It also could mean that your continuing symptoms are due to something other than celiac disease. You might have colitis or some kind of bacterial overgrowth.

I don't think you need to do a gluten chalenge to confirm you have celiac. If you tested positive before then you have it. Best to ask for your previous records and post here. Please don't put yourself through unnecessary pain.

And keep after your doctors. I always bring a piece of paper with notes on it to go over with my doctors. I don't let them out of the exam room until I've gotten answers to all of my questions. It's surprising how many doctors need to be educated. I've taught mine about Muir Torre syndrome, HNPCC, and Celiac disease. They are open to reading articles and have even looked up websites I recommended while I've been in the room with them. Bring books, websites, articles with you and put them in their face. They won't call you crazy if you can quote Dr Green for support.

Thanks for sharing.