Jump to content

  • 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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    2. knitty kitty
      - knitty kitty replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Water filters are a potential problem for Celiac Disease

      Reverse osmosis water pulls electrolyte minerals out of the body. If used for cooking, RO water will even pull even more electrolytes out of the food. If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance. The symptoms of Electrolyte Imbalance are similar to those that occur...
    3. Wheatwacked
      - Wheatwacked replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Water filters are a potential problem for Celiac Disease

      Library paste and paper mache. I have in passing read of wheat based glue used to glue fish tank filters together so it is not surprising they might be in refridgerator filters. Seems the issue with bottled water would be at the personal filters rather than the mass filtering. Just have to boycott the brands that effect you. Gatorade drinks all have...
    4. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Water filters are a potential problem for Celiac Disease

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If...
    5. Scott Adams
      - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Reverse Osmosis (RO) Water

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,577
    • Most Online (within 30 mins)
      7,748
    Claire Carucci
    Newest Member
    Claire Carucci
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Water filters are a potential problem for Celiac Disease

      By knitty kitty · Posted

      Reverse osmosis water pulls electrolyte minerals out of the body.  If used for cooking, RO water will even pull even more electrolytes out of the food.  If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance.  The symptoms of Electrolyte Imbalance are similar to those that occur with being exposed to gluten.   Also consider that many people with Celiac disease have malabsorption issues and may already be low in electrolytes.  Exposure to RO water may create some health changes more quickly than in healthier individuals.   RO water impacts the body in many ways.  Read this fascinating study.   Long-Term Consumption of Purified Water Altered Amino Acid, Fatty Acid and Energy Metabolism in Livers of Rats https://pmc.ncbi.nlm.nih.gov/articles/PMC11122726/ Drink mineral water.  
    • Wheatwacked
      Water filters are a potential problem for Celiac Disease

      By Wheatwacked · Posted

      Library paste and paper mache.  I have in passing read of wheat based glue used to glue fish tank filters together so it is not surprising they might be in refridgerator filters. Seems the issue with bottled water would be at the personal filters rather than the mass filtering.  Just have to boycott the brands that effect you.  Gatorade drinks all have either gums, modified starches or stevia that might be affecting you.  Looking for energy or hydration try Red Bull.  It has the vitamins, minerals, antioxidant Taurine, sugar and glucose to process the sugar from mouth to ATP and clean up. Taurine is essential for protecting mitochondria from damage, such as from reactive oxygen species (ROS) or calcium overload. If you are exclusively drinking bottled water you may want to consider taking Lithium Orotate 5 mg.  We need about 1 mg a day of Lithium and mostly it is gotten from ground water.  Lithium deficiency can cause anxiety and suicide.  I find it helpful. Lithium in the public water supply and suicide mortality in Texas: Journal of Psychiatric Research Is Lithium a Micronutrient? From Biological Activity and Epidemiological Observation to Food Fortification
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in  such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If I went to physician to get checked for other possible triggers from a water bottle, I don’t think that will go anywhere. Again, distilled water containers cause no reactions. I’m not an industry expert, but something is there.  I don’t think that this is a case of microplastics causing this. Too bad we can’t call upon some third party investigation.  
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, it would not pass through RO membranes or remain in finished bottled water at clinically meaningful levels. Plain water — filtered, RO, or bottled — does not contain gluten unless it is intentionally added (which would require labeling). Steam-distilled water is certainly safe, but it is not considered medically necessary for people with celiac disease. If reactions are occurring, it may be helpful to explore other potential explanations with a healthcare provider rather than assuming filter-related gluten exposure.
    • Scott Adams
      Yeast extract

      By Scott Adams · Posted

      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2 or HLA-DQ8). While some laboratory studies have shown that certain Candida proteins (like Hwp1) share limited sequence similarities with gluten or tissue transglutaminase (tTG), that does not mean Candida causes celiac disease or commonly produces false-positive tTG tests in clinical practice. Anti-tTG IgA remains a highly specific and validated marker for celiac when used appropriately (especially alongside total IgA testing and, when indicated, biopsy). IgG antibodies to Saccharomyces cerevisiae (ASCA) are more commonly associated with Crohn’s disease and are not considered diagnostic for celiac. There is ongoing research into microbiome interactions and immune cross-reactivity, but at this time there is no evidence that yeast exposure from foods triggers celiac autoimmunity in people without gluten exposure. If symptoms persist despite a strict gluten-free diet, it’s best to work with a gastroenterologist to rule out other conditions such as IBD, SIBO, non-celiac food intolerances, or refractory celiac disease rather than assuming a fungal-driven mechanism.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.