Do I Need The Endoscopy?

[Marie1976]

Hi I'm new to this board and I am confused about my test results -- and my doc wants me to have an upper endoscopy which I really don't want to do! Here are my abnormal results:

(tTG) Ab, IgA: >100

endomysial AB IgA: Positive

Endomysial AB Titer: 1:160

Is it possible these could mean something ELSE is wrong with me, or are these results specific to celiac? Are false positives a possibility?

How does having the endoscopy "confirm" the diagnosis? I don't want to have this procedure if it's not going to change anything.

I originally went to the doc one month ago (for chronic diarrhea), and he mentioned possibility of celiac, IBS, etc. I got lab work done and started doing the IBS diet and I'm feeling fine now, so I was sure it must be IBS. And now I get these results a month later that say I have celiac? Wouldn't I be getting sick after eating gluten if I had celiac?

I'm confused, I hope someone can answer some of my questions. Thank you!

[adab8ca]

Hi I'm new to this board and I am confused about my test results -- and my doc wants me to have an upper endoscopy which I really don't want to do! Here are my abnormal results:

(tTG) Ab, IgA: >100

endomysial AB IgA: Positive

Endomysial AB Titer: 1:160

Is it possible these could mean something ELSE is wrong with me, or are these results specific to celiac? Are false positives a possibility?

How does having the endoscopy "confirm" the diagnosis? I don't want to have this procedure if it's not going to change anything.

I originally went to the doc one month ago (for chronic diarrhea), and he mentioned possibility of celiac, IBS, etc. I got lab work done and started doing the IBS diet and I'm feeling fine now, so I was sure it must be IBS. And now I get these results a month later that say I have celiac? Wouldn't I be getting sick after eating gluten if I had celiac?

I'm confused, I hope someone can answer some of my questions. Thank you!

Well well well, those are some pretty high results. What I ahve been able to find (because my TTG was >200) is that the false positives tend to be low and that there may be a correlation between damage to the villi and the TTG. My villi were totally atrophied and the Dr. could tell I was a celiac without even the biopsy results (although he went and took samples anyway that confirmed it). and The combo of TTG and EMA being positive, I would think you are the real deal. That being said, most Dr's want the biopsy to make a definitive diagnosis. Unfortunately, I don't know what the IBS diet is, so I can't really comment on it.

FWIW, I am a celiac with hardly ANY stomach symptoms, so because your stomach isn't upset doesn't mean that the damage isn't there. The GI Dr. siad I probably had this forever but I only started knowong there was trouble a year ago and I am now 42!

Good luck!

Ada

[sa1937]

Hi I'm new to this board and I am confused about my test results -- and my doc wants me to have an upper endoscopy which I really don't want to do! Here are my abnormal results:

(tTG) Ab, IgA: >100

endomysial AB IgA: Positive

Endomysial AB Titer: 1:160

Is it possible these could mean something ELSE is wrong with me, or are these results specific to celiac? Are false positives a possibility?

How does having the endoscopy "confirm" the diagnosis? I don't want to have this procedure if it's not going to change anything.

I originally went to the doc one month ago (for chronic diarrhea), and he mentioned possibility of celiac, IBS, etc. I got lab work done and started doing the IBS diet and I'm feeling fine now, so I was sure it must be IBS. And now I get these results a month later that say I have celiac? Wouldn't I be getting sick after eating gluten if I had celiac?

I'm confused, I hope someone can answer some of my questions. Thank you!

Your test results are almost the same as mine were so I'd say you have it. False positives would be very rare...if at all. Even with the biopsy, if the dr. doesn't take enough samples or if damage is patchy, it's possible to have a false negative. You really do need to go on a gluten-free diet with or without the endoscopy. For some reason doctors still believe it is the "gold standard".

Is there any reason that you could not stick with the gluten-free diet without having the endoscopy? If you wanted it in the future, you'd have to go back to eating approx. 4 slices of bread for up to 3 months. You could not pay me enough to ever intentionally consume gluten again (it's hard enough to avoid cross contamination). Not every one has digestive symptoms with celiac (I did and there was no question I was tired of living in the bathroom).

As mentioned by the previous poster, I don't know what an "IBS diet" is either.

[ravenwoodglass]

If you can stick with the diet strictly without the endo then skip the endo. Some doctors are finally giving folks a diagnosis with strong positive tests since the endo has a risk of false negatives anyway. The choice is yours to make.

[larry mac]

Definately get the endoscopy with biopsies now if you have insurance and/or can afford it. Now is the time to get it. It will be too late after you go on the gluten-free diet. It will give you the definative medical diagnosis you will need to prove you have Celiac disease, and prove you need to go on a strict gluten-free diet for the rest of your life.

I strongly believe you need this diagnoses to not only convince yourself, but to be taken seriously by everyone in your world. If you actually have Celiac Disease, you MUST be on a completely strict gluten-free diet or run the risk of getting cancer and other serious medical consequences, even death. Otherwise, you may have doubts about your commitment. And you risk not being taken seriously by family and co-workers. It's a very, very difficult diet. Please believe me when I say, if I wasn't 100% sure of the neccessity, I would be extremely tempted to say "to heck with it, it's worth a little temporary illness for a (name a thousand things you will miss every day).

Do it now while you still can. The procedure is completely painless. You sleep through it and there's no aftereffects. There's no valid reason NOT to do it. I think you will always regret not doing it.

best regards, lm

[Marie1976]

Wow, thanks to all of you for your thoughtful responses! I guess I will go ahead and do the endoscopy. I probably will need the "official" diagnosis before I change my whole diet. I am a vegan so it will be an inconvenience to do vegan AND gluten free. I eat a lot of pasta, grains, meat substitutes (many of which contain gluten) so it will be hard. I guess I've got a while since I'm supposed to keep eating gluten so that the test will be more accurate.

I have read a lot of different advice on how much gluten to eat in order to get an accurate result. One or four pieces of bread per day? And some of them say it has to be whole wheat bread, does it matter?

Not thrilled about the endoscopy because I always become combative under anesthesia. Has anyone had a bad experience with the procedure? My doctor mentioned the possibility of infection/bleeding, but I don't know how frequently that occurs. I'm probably just being paranoid...

[nuttmegs17]

Any procedure requiring "going under" has risks even if rare. It's completely your call although if my doc recommends it I will most likely do it for all the reasons listed by larry mac. I would be too tempted to say cheat a handful of times a year if I thought in the back of my head it was merely an intolerance or an allergy (something worth risking for say, a special occasion). i want to know for sure. I also want to be sure so they can rule out, say, Chrons Diesease.

[ravenwoodglass]

Wow, thanks to all of you for your thoughtful responses! I guess I will go ahead and do the endoscopy. I probably will need the "official" diagnosis before I change my whole diet. I am a vegan so it will be an inconvenience to do vegan AND gluten free. I eat a lot of pasta, grains, meat substitutes (many of which contain gluten) so it will be hard. I guess I've got a while since I'm supposed to keep eating gluten so that the test will be more accurate.

I have read a lot of different advice on how much gluten to eat in order to get an accurate result. One or four pieces of bread per day? And some of them say it has to be whole wheat bread, does it matter?

Not thrilled about the endoscopy because I always become combative under anesthesia. Has anyone had a bad experience with the procedure? My doctor mentioned the possibility of infection/bleeding, but I don't know how frequently that occurs. I'm probably just being paranoid...

If you are normally consuming a lot of pasta and gluten grains then just keep up the diet you are on. You need at least the equivelent of 4 slices of bread a day to help insure and accurate result. Make sure to let the doctor know you have bad reactions to anesthesia and if possible let them know what forms you have reacted to. The endo is usually pretty easy but as with any procedure there are always risks. You can start the diet the day the endo is done, there is no need to wait for results as there is a chance of a false negative so a dietary trial is needed no matter what the results are.

[ravenwoodglass]

Any procedure requiring "going under" has risks even if rare. It's completely your call although if my doc recommends it I will most likely do it for all the reasons listed by larry mac. I would be too tempted to say cheat a handful of times a year if I thought in the back of my head it was merely an intolerance or an allergy (something worth risking for say, a special occasion). i want to know for sure. I also want to be sure so they can rule out, say, Chrons Diesease.

With gluten even if it is 'merely an intolerance' you are still doing damage and forming antibodies. Some folks with 'just gluten intolerance' have even more serious issues than folks who have diagnosed celiac. There is also the chance of a false negative with both blood and endo so do give the diet a strict try after all celiac related testing is done. They will not be able to rule out Chrons with just an endo they would need to scope from both ends.

[larry mac]

With gluten even if it is 'merely an intolerance' you are still doing damage and forming antibodies. Some folks with 'just gluten intolerance' have even more serious issues than folks who have diagnosed celiac. There is also the chance of a false negative with both blood and endo so do give the diet a strict try after all celiac related testing is done. They will not be able to rule out Chrons with just an endo they would need to scope from both ends.

Yes you may be right about that. I want to admit that I don't know as much about gluten intolerances and allergies as maybe I should. I don't ever want to imply that they are not as important, health wise, as Celiac Disease.

I just think, and it's only one opinion, that being positively diagnosed with Celiac Disease ( my villi were totally destroyed, and the biopsies were very positive), has helped convince not only myself (and that's huge in my book), but my family, friends, and co-workers. I feel for those who know in their hearts that they must go on a totally strict gluten-free diet for life, and yet do not have the medical diagnoses. Call me crazy, but I feel that it's made an extremely difficult process more manageable, and acceptable, for me and everyone in my life.

I'm just thankful that I had all the tests and endoscopy/biopsies before I went on the gluten-free diet. Otherwise I'd be in the same situation as many others, and probably would be very reluctant to go back on a gluten diet for it. And I might very well always wonder what exactly do I have?

best regards, lm

[VLH]

I really think that the endoscopy shouldn't be necessary if a person gets relief from the Gluten Free Diet. They don't scope, again, routinely to see how many villi are healed. The risks from a tear in the esophagus or the linings of stomach and duodenum, while small, are also quite serious injuries which put people at risk for infection. I think a blood test should be enough to encourage a patient to seek relief from diet. However, I think I am in the minority at this time. 

[Scott Adams]

Yes, and there is an ongoing issue currently with many duodenoscopes, which will take years to work out.

 

[cyclinglady]

I think they are many factors to consider based on the patient’s history, medical condition, etc.  on whether or not an endoscopy is required.  For me, it provided a baseline (villi damage) and encouraged me to adhere to the gluten-free diet.  It also ruled out any concurrent illnesses.  Five years later, I had GI issues.  I was sure that gluten was getting into my diet despite my best efforts.  My Antibodies were off the charts and were not coming down.  I even trialed the Fasano strict gluten-free diet.  I knew about the scope issues and discussed it with my GI.  I decided it was worth the risk.  Turns out I had a polyp removed) and my small intestine had healed (even with very elevated antibodies still).  However, gastric biopsies revealed Chronic Autoimmune Gastritis which was the root cause of my current issues and not active celiac disease.  My GI had no explanation for the continued elevated antibodies when my small intestine had healed nor could I find any research other than the blood tests were not designed to be used for follow-up testing (but they are used because they are the only non-evasive “tool-in-the-toolbox”).  

I am thankful that I had both my endoscopies.  Everyone must decide what is best for them with the help of their doctors. 

[1888]

I have just not log had this Endoscopy. Both ends but thankfully different cameras :D 

If stressing about an upper one like i was when i got to the Hospital i was giving the option of the camera up the nose rather than down the throat. I took this option and was glad i did as you can breath easily and talk to the nurse what was handy for asking questions as i was watching it all on the monitor and was fascinated.  You can also drive home again straight after.