Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

momof6

Recommended Posts

momof6 Newbie
momof6
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sherylj Rookie
sherylj
Posted

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 Proficient
psawyer
Posted

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. :angry:

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

Ursa Major Collaborator
Ursa Major
Posted

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 Community Regular
tarnalberry
Posted

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 Community Regular
Fiddle-Faddle
Posted

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 Mentor
ravenwoodglass
Posted
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
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 Enthusiast
Nancym
Posted

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 Collaborator
happygirl
Posted

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 Rising Star
CMCM
Posted

:lol: :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. :angry:

jerseyangel Proficient
jerseyangel
Posted
:lol: :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. :angry:

Me too :(

Dreadful....

2Boys4Me Enthusiast
2Boys4Me
Posted

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 Enthusiast
e&j0304
Posted
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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,751
    • Most Online (within 30 mins)
      7,748
    Alison A
    Newest Member
    Alison A
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      High blood test numbers - with scales. Any advice?

      By Scott Adams · Posted

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
    • Sandi20
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Sandi20 · Posted

      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
×
×
  • Create New...