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

Wonderful News


jayhawkmom

Recommended Posts

jayhawkmom Enthusiast

I'm still pretty new to this forum - so I wasn't here during the beginning of the doctor/hospital visits for our daughter.

Briefly... at 22 months, my daughter weighed 28 lbs.

On May 18th, at 2 months away from her 5th birthday - she weighed 30 lbs. The last time her height was checked, she was 39" tall. She wasn't even ON the growth charts. She'd completely fallen off.

Tummy aches, "D", vomitting... numerous doctor visits, and finally the word "Celiac" mentioned - more doctor visits, blood draws, tests, Upper GI, Endoscopy.... etc. Blood tests all high normal, except IgG - off the charts. Endoscopy - duadinal ulcers, consistant with celiac, but no damaged villi - so no diagnoses.

Prevacid for ulcers, gluten-free diet recommended.

June 13 - 30 lbs, 39" --- started gluten-free diet

July 26 - 5 year well child checkup ---- 33 lbs and 40" !!!!

And, she's back ON the growth charts, at 8th percentile and 10th for height.

This diet IS working!!!!

I am THRILLED!!


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



Celiac.com Sponsor (A8-M):



Sarah8793 Enthusiast
I'm still pretty new to this forum - so I wasn't here during the beginning of the doctor/hospital visits for our daughter.

Briefly... at 22 months, my daughter weighed 28 lbs.

On May 18th, at 2 months away from her 5th birthday - she weighed 30 lbs. The last time her height was checked, she was 39" tall. She wasn't even ON the growth charts. She'd completely fallen off.

Tummy aches, "D", vomitting... numerous doctor visits, and finally the word "Celiac" mentioned - more doctor visits, blood draws, tests, Upper GI, Endoscopy.... etc. Blood tests all high normal, except IgG - off the charts. Endoscopy - duadinal ulcers, consistant with celiac, but no damaged villi - so no diagnoses.

Prevacid for ulcers, gluten-free diet recommended.

June 13 - 30 lbs, 39" --- started gluten-free diet

July 26 - 5 year well child checkup ---- 33 lbs and 40" !!!!

And, she's back ON the growth charts, at 8th percentile and 10th for height.

This diet IS working!!!!

I am THRILLED!!

This is so wonderful to hear!! :):) Happy for your daughter!

Sarah

angel-jd1 Community Regular

Congrats. I'm sure you are breathing a sigh of relief!!

-Jessica :rolleyes:

jerseyangel Proficient

Wonderful news! :D

wolfie Enthusiast

Wow....great news! :)

lonewolf Collaborator

That's great to hear. You must be so relieved to find out what can help her be healthy!

zip2play Apprentice

That is great news! How exciting for you all!

I see your ID is jayhawkmom. You a KU fan? Live near Lawrence KS? That's where I live. Has your 8 year old been tested?

Monica


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



Celiac.com Sponsor (A8-M):



Cheri A Contributor

Congrats to you and your dd!!

jayhawkmom Enthusiast
I see your ID is jayhawkmom. You a KU fan? Live near Lawrence KS? That's where I live. Has your 8 year old been tested?

Hi Monica. Yes, big KU fans, yes...we live near Lawrence - we are in the KC Metro. My 8 year old was tested a few years ago, but not recently. He doesn't have any outward symptoms but I do (now) realize that it's not necessary to HAVE outward symptoms. At 2, his pediatrician sent us for testing since he hadn't really gained much weight between 1 and 2. Then again at 5 we were sent for testing due to behavioral issues. They did some sort of peptide tests looking for "problems" related to gluten/casein.

But, I'm starting to have concerns about my baby. That's a whole other story.

Tori's Dad Apprentice

Awesome! It's amazing how quickly they start to gain weight. Our 5 yr old weighed 30 pounds on May 22 when she was diagnosed. By June 22nd she had gained 3 lbs. That's 10% of her body weight.

Nikki2003 Contributor

That is great. Can I ask you how long she was on the diet before she started gaining and doing better?

THanks for any answers

Braunson's-mom Rookie

Hi since you all are for Ks (I live 30 mi south of Salina) who do you dr with. We had Dr San Plablo at Children Mercy and didn't like him at all. We finally just put him on a gluten-free diet and then had sucess. Please let me know of a good dr because in 20mo of a gluten-free diet we have never had a check up. My ped would like to know if we are on the write track. Since putting Braunson on the diet my 9yr old and my self have all started the gluten-free diet. We still have 3 children not on it and my husband. My nephew last week was started on the diet. With great success. None of us have a celiac diagnosis but all have had postitive dietary change.

jenvan Collaborator

That's great! Keep up the good work mom! :D

taz sharratt Enthusiast
I'm still pretty new to this forum - so I wasn't here during the beginning of the doctor/hospital visits for our daughter.

Briefly... at 22 months, my daughter weighed 28 lbs.

On May 18th, at 2 months away from her 5th birthday - she weighed 30 lbs. The last time her height was checked, she was 39" tall. She wasn't even ON the growth charts. She'd completely fallen off.

Tummy aches, "D", vomitting... numerous doctor visits, and finally the word "Celiac" mentioned - more doctor visits, blood draws, tests, Upper GI, Endoscopy.... etc. Blood tests all high normal, except IgG - off the charts. Endoscopy - duadinal ulcers, consistant with celiac, but no damaged villi - so no diagnoses.

Prevacid for ulcers, gluten-free diet recommended.

June 13 - 30 lbs, 39" --- started gluten-free diet

July 26 - 5 year well child checkup ---- 33 lbs and 40" !!!!

And, she's back ON the growth charts, at 8th percentile and 10th for height.

This diet IS working!!!!

I am THRILLED!!

oh well done you !! im thrilled for you too, this is fab news.i have a 5 year old to who is patly sighted and when things start to turn aroung for them its the best and you just wanna shout it from the roof tops. great!!!!

zip2play Apprentice

I too cannot suggest a KS doctor. MY GI Dr would completely disagree with me having gluten issues. He was full of CRAP! He felt, negative biopsy, NO ISSUES!

But, positive diet response....to me proves it!

Jayhawk, can your 8 year old go gluten free to see if it helps or changes things?

Funny thing, we live here in Lawrence, have for 10 years. My husband graduated from K State. WE have a 7 year old boy that EATS/SLEEPS/BREATHS KU! As you know, K State and KU polar opposites! I just have to sit back and laugh at it all! I am a Missouri girl! ;)

Monica

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748

    Amari Love
    Newest Member
    Amari Love
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.