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

Need Advice About Testing My Son, Feeling So Conflicted

megsybeth

Recommended Posts

megsybeth Enthusiast
megsybeth
Posted

My son has had very small stature since two months, also weak teeth enamel, poor concentration, anemia. Motor delays. He has seen a couple GIs who are not celiac experts but did some blood testing. He had negative bloodwork at 18mo, 2.5 years and a few weeks ago at four. BUT he also started having more pronounced GI issues: distended belly, diarrhea, constipation. And I just tested positive on bloodwork.

My son was set to have a colonoscopy/endoscopy last week but I stupidly canceled. His GI had told me shes never seen a positive biopsy with negative blood work. This suggested to me that I dont want her doing the biopsy so I wanted to have a specialist do it. But of course he cant get into a specialist until the end of. Nov, and an endoscopy would probably be another month wait. So I just decided to take him off. gluten. This was a week ago.

Well the not so great GI has my son scheduled for an endoscopy/colonoscopy in two weeks. I was planning to cancel but Ive had a change of heart. He still has diarrhea. What if it's colitis or something? I know it could be dairy, lingering gluten issues, but I decided to pu t him back on gluten for the next two weeks. I hope Im doing the right thing. I cant change my mind again!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I think you're doing the right thing, Mom, considering you yourself are celiac. The one week off gluten will probably not make a difference. You may get a positive or he may not yet have enough damage since he is young. Either way, I am sure you will give him a good 3-6 month gluten free trial after the EGD.

I am sure you know from what you have read on here that you should make sure that the doctor takes at least six biopsy samples to be sure of catching damaged areas. :)

GottaSki Mentor
GottaSki
Posted

This process is not easy.

Keep him on gluten until the endo is complete.

Ask how many samples of the small intestine your doctor plans to take and whether these samples will be taken regardless of visual signs of Celiac Disease.

Here's a great article that another member posted which explains what should be done. Read and bring a copy along to show the doctor if they are dismissive of the specific need of celiac samples.

Open Original Shared Link

Hang in there!

megsybeth Enthusiast
megsybeth
Posted
  • Author

Thanks. Mushroom :). I will tell her. Honestly I feel terrible about glutening my son but what reakky gets my goat is the money this mediocre GI will get from my insurance. But maybe I'm still a little crazy from my untreated celiac.

mushroom Proficient
mushroom
Posted

Thanks. Mushroom :). I will tell her. Honestly I feel terrible about glutening my son but what reakky gets my goat is the money this mediocre GI will get from my insurance. But maybe I'm still a little crazy from my untreated celiac.

Just maybe, she will see her first positive biopsy with negative blood, and she will become a better doc because of it :D and not just go around dismissing people. And I agree with Lisa, she has to take the samples regardless of what she "sees". :ph34r: since most celiac damage cannot be seen with the naked eye.

megsybeth Enthusiast
megsybeth
Posted
  • Author

Lisa, thanks for the article! And Mushroom, thanks for reminding me to stay positive. I need to remember that finding out at four would make my son really lucky compared to most of us.

GottaSki Mentor
GottaSki
Posted

Lisa, thanks for the article! And Mushroom, thanks for reminding me to stay positive. I need to remember that finding out at four would make my son really lucky compared to most of us.

You are welcome...but credit for the article goes to Mushroom too :)

She's right - stay positive :)

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

Celiac.com Sponsor (A8-M):


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. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,917
    • Most Online (within 30 mins)
      7,748
    tiffanygosci
    Newest Member
    tiffanygosci
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.