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

Our Follow Up Gi Appt.....

taweavmo3

Recommended Posts

taweavmo3 Enthusiast
taweavmo3
Posted

Just wanted to share some good news about our follow up appt. It has been 8 months since being dx'd....and my itty bitty girl has gained 11 pounds, and grown 4 inches!!!!! She is still little, at 35" and 34lbs, but now it's a "cute" little, instead of "deathly ill" little. If that makes any sense at all, lol.

I know all you moms and dads on here can appreciate my happiness better than anyone else, so thought I'd share.

He also ran a follow up antibody titer, but I'm still anxiously awaiting those results. I just love this doctor, and I loved him even more when he admitted that the best resource for me is other parents. He asked if I had joined a support group, online support groups, etc. It was a long appt for a follow up, he was very thorough. He also listened to my concerns about my other two kids, and didn't hesitate to suggest a celiac panel on both. It was so nice to have a good doc visit!!

That's it, thanks for listening!

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

Celiac.com Sponsor (A8-M):


2Boys4Me Enthusiast
2Boys4Me
Posted

Congratulations! I'm happy for you.

My son has been gluten-free since August 18 (almost 3 months) and teeters around the 34/35 lb mark, depends on how big a supper he ate. He is 43 inches tall. At the one month follow-up he had gained 1/2 kg (1 lb) and grown 1 cm (about 1/2 inch). Personally, I think the weight was because he was wearing pants and a sweatshirt and socks and at the day of the biospy he was barefoot, and in shorts and a t-shirt. I have not seen any of the miraculous changes all the other parents talk about.

jerseyangel Proficient
jerseyangel
Posted

So happy to hear your little girl is doing so well. What a great Dr. you have there!

mart Contributor
mart
Posted

Tamara, congratulations! What fantastic news! Linda, don't worry. You're not alone. My son hasn't gained or grown much either in the four months he's been gluten-free. But I'm hopeful and have faith. Hang in there.

Jnkmnky Collaborator
Jnkmnky
Posted

That's great news for you guys! To the other posters with kids not gaining... I never paid attention to what my son gained or grew after dx...mainly because the most profound aspect of his version of Celiac was the peptide poisoning/autism behavior. I couldn't tell you specifics about height and weight, but I can tell you that he's small and not heavy even now four years+ later. If I'd focused on the average weight and height charts drz use, I'd have been pulling my hair out. It's a great indicator of absorption, I'm sure, but I was more impressed with cognitive recovery.

e&j0304 Enthusiast
e&j0304
Posted

Tamara,

I was so happy to read your post. I am so glad that little Emmie is doing so well. That has to make you feel so good!! :D

For the others who's kids are not gaining. My dd is also not gaining really fast if at all. She will be 3 in 2 months and is only about 26.5-27lbs and 34" tall. She's a peanut, but is SO much healthier and is absolutely thriving in every way. She is small boned and has tiny features, so I believe that she will always be a little small. I wouldn't worry too much about what the scale says and worry more about how they are feeling/behaving.

Good luck to everyone!

Guest nini
Guest nini
Posted

Yay! It's so nice to hear good news and a good Dr. report! Sounds like you have a keeper doc. there!

My lil princess is still only 40 pounds at 42 inches tall, and she is very slender, but she looks so much healthier than she did 2 years ago. The most important thing to me is how healthy and happy she is. She feels great and is eating great and really thriving. (very important after being dx with failure to thrive)...

I'm not going to stress on how skinny she is when she is doing really well with everything else.

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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,024
    • Most Online (within 30 mins)
      7,748
    Sunset Blue
    Newest Member
    Sunset Blue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.