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

My Son's Story

CeliacMom2012

Recommended Posts

CeliacMom2012 Newbie
CeliacMom2012
Posted

When my son was 1 1/2 he had to have surgery for 3 abdominal hernias. Up until then we were doing great, no signs of anything being wrong. After 4 years of being told nothing was wrong, that he was just constipated. I made a phone call to a family member who has Celiac and is also the CEO of GIG. I was told exactly what test to have done. After talking with her I automatically started the gluten-free diet. After the blood work came back positive we where referred to Children's Hospital in Birmingham, AL to Dr Dimmit. Our first appointment he wanted to do all the same stuff that all the other Drs had us doing. I told him that I was not starting everything all over again because we had went thru 4 years of being treated for constipation I was not putting him thru all this stuff that didn't work in the first place. So 3 days later we were in the hospital for the biopsy and a medical 'clean-out' (which was so much better then all the 'crap' they were having us do at home).

After being to just how severe his Celiac was I did all my research and I am still doing. So after not being able to poop for several years we are still having troubles after being on the diet since Feb 2012. I strictly monitor his food intake, however, when he is visiting his father, I don't believe that they are following the diet the way they should. So I am starting a journal of everything that he eats and does, in hopes of being able to see a pattern of hurting and such.

Since being diagnosed I have been informed that my son may have to have part of his insistent removed as they are not healing like they need to. Has anyone ever had this done?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I assume you mean they want to remove his intestine? Because it isn't healing? This isn't enough reason for his father to feed him gluten free?

I would get a lawyer and maybe the doctors can help you with some sort of emergency court order to keep his father from poisioning him? Removing part of an intestine is serious.

deb445 Rookie
deb445
Posted

. I strictly monitor his food intake, however, when he is visiting his father, I don't believe that they are following the diet the way they should. So I am starting a journal of everything that he eats and does, in hopes of being able to see a pattern of hurting and such.

Since being diagnosed I have been informed that my son may have to have part of his insistent removed as they are not healing like they need to. Has anyone ever had this done?

I'm not familiar with someone so young having part of their intestine removed - my grandmother ( she'll be 90 in two weeks! ) had this done a few months back. She is trying to embrace the gluten free diet, but has difficulty.

With regards to the food journal - great idea. I suppose it is for your son's father to write in also? I would think that if he knows it is medically recommended, as a means of determining whether or not the surgery could be avoided, he'd be onboard and supportive?

Failing that, how would it be received if you prepared meals for your son, and sent them with him, to consume while at his dad's? This could be presented as a medical recommendation also?

I did meal preparations for our previous daycare provider, and sent it with the kids. A lot of extra responsibility, but it gave me peace of mind. Just a thought.

Something else I thought of is dairy - what is your instinct on how his body is responding to dairy? Does he seem congested a lot?

CeliacMom2012 Newbie
CeliacMom2012
Posted
  • Author

His father tells me that he follows the diet, but that is one of the reasons for the journal. So that I can find issues. As far as the removal of part o the intestine, they told me it is because of the severe pain and not healing at all. That he stayed so impacted for so long and with his colon not returning to a normal size, that it would be the best option for him. I was told they only do this in severe cases.

CeliacMom2012 Newbie
CeliacMom2012
Posted
  • Author

I'm not familiar with someone so young having part of their intestine removed - my grandmother ( she'll be 90 in two weeks! ) had this done a few months back. She is trying to embrace the gluten free diet, but has difficulty.

With regards to the food journal - great idea. I suppose it is for your son's father to write in also? I would think that if he knows it is medically recommended, as a means of determining whether or not the surgery could be avoided, he'd be onboard and supportive?

Failing that, how would it be received if you prepared meals for your son, and sent them with him, to consume while at his dad's? This could be presented as a medical recommendation also?

I did meal preparations for our previous daycare provider, and sent it with the kids. A lot of extra responsibility, but it gave me peace of mind. Just a thought.

Something else I thought of is dairy - what is your instinct on how his body is responding to dairy? Does he seem congested a lot?

My son is 7 now.

kvanrens1 Explorer
kvanrens1
Posted

Hey CeliacMom,

My daughter has seen Dr. Dimmit in the past. Out of frustration, I went to another Ped GI closer to home (Huntsville, AL). Also very frustrating experience with the Huntsville Ped GI. Do you know if Dr. Dimmit is the "expert" in the Alabama? Would love to swap a few doctor stories with you. Can you message me? Hope your son is feeling better.

Kristy

CeliacMom2012 Newbie
CeliacMom2012
Posted
  • Author

Hey CeliacMom,

My daughter has seen Dr. Dimmit in the past. Out of frustration, I went to another Ped GI closer to home (Huntsville, AL). Also very frustrating experience with the Huntsville Ped GI. Do you know if Dr. Dimmit is the "expert" in the Alabama? Would love to swap a few doctor stories with you. Can you message me? Hope your son is feeling better.

Kristy

I have had very good experience with Dr Dimmit. Everyone in the office was very understanding that I already knew a lot about Celiac because of his aunt being the CEO of GIG. It was surprising that when I told them I would not put my son through the home clean outs again, they went to the next step after me reviewing with me his past. The hospital staff was amazing also. If I needed anything they got it for me so that I wouldn't have to leave my son's room. Even having to clean up is poo messes they were amazing. I drive 3.5 to 4 hours for his appointments. Me and my husband have even talked about moving closer to the office.

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

Celiac.com Sponsor (A8-M):


Birdie19 Rookie
Birdie19
Posted

Wow, what woes you have had....I am so sorry! A food journal is a fantastic idea!

We started one and since a lot of our family indicators are behavior I am writing about all this too. Write what you can when you can. It has helped us a lot!

It will take time to undo everything and heal the damage!

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
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in ...
    2. Scott Adams
      - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also ...
    3. Scott Adams
      - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those...
    4. Scott Adams
      - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

      This article is a few of years old, but my still be helpful.
    5. trents
      - trents commented on Scott Adams's article in Winter 2026 Issue
      14

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      This is likely dependent on the sensitivity of the individual celiac.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    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

    • Scott Adams
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Scott Adams · Posted

      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      Low iron and vitamin d

      By Scott Adams · Posted

      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      Healthy Gluten Free Foods low sugar that you found?

      By Scott Adams · Posted

      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      Trip to Anaheim/Disney

      By Scott Adams · Posted

      This article is a few of years old, but my still be helpful.  
    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
×
×
  • 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.