Please Help Me Choose Endoscopy Or No Endoscopy For My Son.

[momof6]

My son, age 6, has had digestive issues for a long time. He has belly pain/bloating after meals; actually it begins before the meal is half over. The worst of his pain seems to be in the area just below his stomach, around his navel. He also has cramps in his left side. He has bouts of constipation/diarrhea, and has had gastric reflux for several years. Currently he takes previcid daily for reflux. He also has tooth enamel issues, and has just begun sleeping through the night.

He has been doing better, so much so that we hoped he was "over" whatever was bothering him, but in the last couple of weeks his symptoms have come back with a vengence. The pediatric gastro doctor ran many tests on him, but can't pinpoint a cause. She feels he should have endoscopy/biopsy to determine if this is celiac.

Reading what I've typed out makes it seem so much clearer to me. I think we do need to try to pinpoint the cause. Endoscopy/biopsy would be the next logical step, wouldn't it? He has had multiple bloodtests, upper G.I., allergy tests, and tests to rule out parasites and infections. I'm not sure of the "numbers" on his bloodwork, but the gastro doctor said there were no "red flags"; however, she hasn't ruled out celiac.

What do you all think?

[sherylj]

  momof6 said:

My son, age 6, has had digestive issues for a long time. He has belly pain/bloating after meals; actually it begins before the meal is half over. The worst of his pain seems to be in the area just below his stomach, around his navel. He also has cramps in his left side. He has bouts of constipation/diarrhea, and has had gastric reflux for several years. Currently he takes previcid daily for reflux. He also has tooth enamel issues, and has just begun sleeping through the night.

He has been doing better, so much so that we hoped he was "over" whatever was bothering him, but in the last couple of weeks his symptoms have come back with a vengence. The pediatric gastro doctor ran many tests on him, but can't pinpoint a cause. She feels he should have endoscopy/biopsy to determine if this is celiac.

Reading what I've typed out makes it seem so much clearer to me. I think we do need to try to pinpoint the cause. Endoscopy/biopsy would be the next logical step, wouldn't it? He has had multiple bloodtests, upper G.I., allergy tests, and tests to rule out parasites and infections. I'm not sure of the "numbers" on his bloodwork, but the gastro doctor said there were no "red flags"; however, she hasn't ruled out celiac.

What do you all think?/quote]

YES, I would follow your dr. suggestion for the biopsy. And I think you are fortunate to have a dr. who is covering all the bases. Sherylj

[psawyer]

Based on what you say, my inclination would be to say yes to the endoscopy. I don't know exactly what blood tests were done. A positive biopsy is a definitive diagnosis of celiac, regardless of what the blood tests may say. As I recall, the blood tests are less accurate in young children. Also, the endoscopy is not restricted to celiac disease, and may reveal some other condition which is causing gastric symptoms.

Prior to my diagnosis, I had multiple severe digestive symptoms. Often I would feel hungry, but after eating just a few mouthfuls of food, I would develop cramps and nausea, throwing up within minutes of eating.

TMI warning: The worst of all would be experiencing the cramps after eating while sitting on the throne with severe diarrhea and simultaneously vomiting into the bucket I was holding. Yucch. Both ends at once! A unique celiac experience.

The endoscopy/biopsy could answer many questions. I would choose to do it.

[Ursa Major]

I agree that the endoscopy would be a good idea. Just beware that even the biopsy isn't that accurate and yields false negatives. The intestines have a very large surface area, and the biopsies aren't necessarily taken from the damaged areas. Therefore, if you get a positive biopsy, it is celiac disease, but if the biopsy comes back negative, it could still be celiac disease.

No matter what, you definitely should try your son on the gluten-free diet after the biopsy is done, regardless of what the results show. Because the diet trial is still the best test of them all.

[tarnalberry]

Given that everything else has been negative or inconclusive, I think that continuing to look is better than doing nothing, and this sounds like the next step, unpleasant though it may be. Good luck!

[Fiddle-Faddle]

JUst out of curiosity, why doesn't anybody think that a trial of the gluten-free diet might be a better indicator and safer course than an endoscopy? There ARE risks to the endoscopy because of the anesthesia, and there are false negatives. What if the endo results are negative? Does that mean you wouldn't try the diet? What will an endoscopy do that a diet trial won't?

Seems to me the diet is the first place to start...

[ravenwoodglass]

  Fiddle-Faddle said:

JUst out of curiosity, why doesn't anybody think that a trial of the gluten-free diet might be a better indicator and safer course than an endoscopy? There ARE risks to the endoscopy because of the anesthesia, and there are false negatives. What if the endo results are negative? Does that mean you wouldn't try the diet? What will an endoscopy do that a diet trial won't?

Seems to me the diet is the first place to start...

I agree with this whole heartedly, the risk of a false negative or hearing, 'well there are changes but we can't really say he's celiac till more damage is present' and ending up back at square one are there.

Dietary response is diagnostic, have you tried the diet strictly with him for a bit? That would be the way I would go.

[Ursa Major]

  Fiddle-Faddle said:

JUst out of curiosity, why doesn't anybody think that a trial of the gluten-free diet might be a better indicator and safer course than an endoscopy? There ARE risks to the endoscopy because of the anesthesia, and there are false negatives. What if the endo results are negative? Does that mean you wouldn't try the diet? What will an endoscopy do that a diet trial won't?

Seems to me the diet is the first place to start...

Well, the reason why I said that the endoscopy is a good idea is, that the boy is still eating gluten. A lot of people will put a child back on gluten if the doctor says he wants to do an endoscopy after all, because they want to 'really know'. And that is more cruel than keeping him on gluten now (before he knows how good he might feel off it), do a biopsy and then doing the diet trial.

[Nancym]

I think a firm diagnosis is the best of all worlds then neither parent nor child can ever rationalize them eating wheat as "it's just gluten sensitivity not celiac" -- which I think is what a lot of people end up doing.

[happygirl]

An endoscopy can look for other things (i.e., this might not be entirely/or at all Celiac). A gluten free diet won't help much if he doesn't have a problem with gluten, and has other problems.

[CMCM]

:lol: I've had this very unique experience as well. Lovely, isn't it!

TMI warning: The worst of all would be experiencing the cramps after eating while sitting on the throne with severe diarrhea and simultaneously vomiting into the bucket I was holding. Yucch. Both ends at once! A unique celiac experience.

[jerseyangel]

  CMCM said:

:lol: I've had this very unique experience as well. Lovely, isn't it!

TMI warning: The worst of all would be experiencing the cramps after eating while sitting on the throne with severe diarrhea and simultaneously vomiting into the bucket I was holding. Yucch. Both ends at once! A unique celiac experience.

Me too

Dreadful....

[2Boys4Me]

Ty's blood test was overwhelmingly positive.

The doctors pretty much said they only wanted to do the endoscopy to see what was there, but they were sure they were looking at celiac because of the blood tests.

He had the endoscopy when he was 5yrs 9months old.

They did find damage: some villi normal, some with severe villous atrophy "consistent with celiac disease".

[e&j0304]

  Fiddle-Faddle said:

JUst out of curiosity, why doesn't anybody think that a trial of the gluten-free diet might be a better indicator and safer course than an endoscopy? There ARE risks to the endoscopy because of the anesthesia, and there are false negatives. What if the endo results are negative? Does that mean you wouldn't try the diet? What will an endoscopy do that a diet trial won't?

Seems to me the diet is the first place to start...

I think that the benefits to finding out the information during an endoscopy FAR outweigh any potential risks. Most people do completely fine with the anesthesia and if you have a good dr. they should be able to find the damage. If that is all negative then I would absoloutely do a trial of the diet. I agree with Ursula that it only makes sense to try to get the diagnosis first and then try the diet so the parent and child aren't left with the "Well maybe we should have done it...." thoughts. It is not at all easy to put a sick child back on gluten just for a challenge. Also, there are other conditions other than celiac that could be affecting that child. He deserves to have every possible chance of receiving a diagnosis if it's something he will have to deal with for the rest of his life...

JMHO