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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,133
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.