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

Going To See Biopsy Surgeon

mommy2joseph&david

Recommended Posts

mommy2joseph&david Newbie
mommy2joseph&david
Posted

I am new here...my 23 month old son has recently been diagnosed with borderline celiac disease through blood work. Joseph is giong to the surgeon Friday to set up a time to have his biopsy of his small intestine done. I am scared and my head is spinning :unsure: I have no idea where to turn with all this and I am on information overload.

My family and my husband's family are NO help...they think that we are crazy trying to find a cause to our son's chronic diarrhea. After 23 months I knew something was not right and I curse myself for waiting so long to find out what the cause was. I feel so guilty for poisoning my son's system with gluten.

I am hoping to find support and answers here, we are just at a loss and only have eachother to talk to. We just really need questions for the surgeon and lots of prayers that things go well.

Thanks, hope I find the support I desperately want here...

Tina

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

Celiac.com Sponsor (A8-M):


Happycat Rookie
Happycat
Posted

Hi Tina,

We do the best we can for our kids and I know you feel bad about not knowing what was making your son sick but it's not your fault so don't beat yourself up over it. Now that you know he will get better! And isn't it good to know that a diet change not medicine will make him better.

Take care,

Lisa :)

lovegrov Collaborator
lovegrov
Posted

Ask the dooctor how many samples he will take. Two or three is not enough. Ten or more is good.

Does he believe you have to have flattnened villi to have celiac? Experts in celiac now believe that even mildly damaged villi should be considered celiac, not just gluten intolerance.

richard

Boojca Apprentice
Boojca
Posted

First, don't feel guilty. You can't bc you will make yourself crazy...and then confirm your family's thoughts! And we wouldn't want them to be right, right?!

That said, you go and you get your answers. My son was diagnosed in June at 2 1/2 years old, and he was down to 23 lbs.

The endoscopy is no big deal, and in fact your son will not even remember it. The worst part is the anesthesia/IV...but after that it's smooth sailing. My son even woke up and wanted McDonald's and then proceeded to run me ragged for the rest of the day instead of "laying low" as I'd hoped he would!

Definitely make sure the doc takes multiple samples from different spots in the intestine...one area may not be affected at all, while others are. This is a tricky disease!

Bridget

Guest memoryofaspyn
Guest memoryofaspyn
Posted

Hey Tina, I hope you are getting the answers you are looking for, you will be in my thoughts and prayers. talk to you soon!!! Your friend, Stacy!

mommy2joseph&david Newbie
mommy2joseph&david
Posted
  • Author
First, don't feel guilty. You can't bc you will make yourself crazy...and then confirm your family's thoughts! And we wouldn't want them to be right, right?!

That said, you go and you get your answers. My son was diagnosed in June at 2 1/2 years old, and he was down to 23 lbs.

The endoscopy is no big deal, and in fact your son will not even remember it. The worst part is the anesthesia/IV...but after that it's smooth sailing. My son even woke up and wanted McDonald's and then proceeded to run me ragged for the rest of the day instead of "laying low" as I'd hoped he would!

Definitely make sure the doc takes multiple samples from different spots in the intestine...one area may not be affected at all, while others are. This is a tricky disease!

Bridget

Thank you all. I will make sure to ask the surgeon to take from several places in the intestine. First I will ask what his intensions are before I tell him what to do..I know alot less than him since I do not have MD behind my name.

My Joseph weighs about 24 pounds...he eats everything in sight and does not gain an ounce. People just used to tell me it was okay because he was so active, but I am finding out that is not the case. The little guy would eat me out of house and home! He has a really bad diaper last night, now he has really bad diaper rash...just want to move on the next step and get rid of the diarrhea. But for now it is gluten, gluten, gluten to make sure that biopsy gives us the proper report.

Thanks again, I will try not to beat myself up too much, I just feel like I failed my son by not trying to get an answer sooner.

Tina

Archived

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

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


  • Member Statistics

    • Total Members
      130,051
    • Most Online (within 30 mins)
      7,748
    levizagepro
    Newest Member
    levizagepro
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Pepsid alternative

      By Scott Adams · Posted

      It seems crazy to me that even when you call a manufacturer they can't, in this day and age, answer the simple question about what exactly is in their product!!
    • Stephanie Wakeman
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Stephanie Wakeman · Posted

      Thank you so much for your response! It's been a challenging journey with this condition! 
    • milana
      Pepsid alternative

      By milana · Posted

      Thank you very much for your response. Since I got this advice I called Pepsid manufacturer and they could not give a definite answer. Basically,  there is no final testing and they do not guarantee anything. So I went and got farmotidine from Wagmans that was marked gluten-free and also our pediatrician gave us a prescription for farmotidine that was also gluten-free. So there are other options there thankfully. In case someone will come across of this dilemma.
    • Diana Swales
      Recently qualified Nutritionist looking for support

      By Diana Swales · Posted

      A nutritionist typically focuses on general wellness, lifestyle guidance, and preventative health. A dietician allowed to provide medical nutrition therapy. When i was diagnosed there was zero support and few dieticians and Dr understood celiac disease.  I typically guide a newly diagnosed celiac to a whole food diet to easily transition to the gluten free lifestyle  
    • Scott Adams
      gluten-free self diagnosed journey so far as well as what triggers. Eye crying like peeling onions?

      By Scott Adams · Posted

      Your gluten-free journey sounds like a lot of trial and error—especially working in a deli where gluten exposure is constant! The eye-watering issue could be an airborne gluten sensitivity (like flour dust irritating your eyes) or even a mild wheat allergy, since you’re around it daily. A daily antihistamine (like Claritin or Zyrtec) might help if it’s allergy-related, but avoiding airborne gluten as much as possible (masking, washing hands/face often) is key. It’s great you’re tracking triggers—high-fiber foods and certain gluten-free substitutes (like those tortillas or PB pretzels) can sometimes cause similar symptoms due to additives or digestive adjustments. For travel, pack safe snacks (protein bars, nuts) and research gluten-free translation cards for Aruba. On flights, opt for packaged gluten-free meals or eat beforehand. Many gluten-free foods and baking mixes contain xanthan gum or other gums like guar gum. Although they are both gluten-free, they may cause IBS-type issues in some people with celiac disease or gluten sensitivity:   You’re doing all the right prep—trust your research and enjoy your trips! 
×
×
  • Create New...