Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Finally The Gi And I Are On The Same Page


janelyb

Recommended Posts

janelyb Enthusiast

So our last visit to the GI in April she didn't think he was celiac or gluten intollerent for that. She said put him back on gluten. I didn't listen to her and I kept him off gluten and then took out dairy too.

Well today we went for our follow up and I told her how great he was doing on the Gluten-free Casein-free diet and how his rash went away, how his appetite has increased,he's growing, etc etc.....I showed her our genetic testing from enterolab. And guess what she said that is great if the diet is working keep gim on it! Then she proceeded to tell me the IGG test that she did that was "false Positive"(her words) is actually an indicator of early signs of celiac. She did say the only way to know for sure is biopsy but she didn't suggest we go that route unless we really wanted too. I said no way, this is proof to me! Oh she did say I might want to challenge it to see if he reacts to all gluten, I told her we've already accidentally done that and that is proof to me! So awesome she agrees with me,can't wait to tell me local Celiac group who are having problems with her

She agreed and we have a follow up in 4 months.

So in 2 months he has gained 2 pounds and grown about 1.5 inches!

ETA: She even said Gluten Free is much healthier way to eat! Whoo hoo!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



sjust Apprentice

I am so glad you got good results. We went to see the G/I today and really did not get anywhere. Rebecca is not loosing weight and has dropped to the 1% for weight. He is doing RAS testing and wants me to supplement but I don't know what to do. I am trying to get into Stanford now.

Sarah

Link to comment
Share on other sites
janelyb Enthusiast
I am so glad you got good results. We went to see the G/I today and really did not get anywhere. Rebecca is not loosing weight and has dropped to the 1% for weight. He is doing RAS testing and wants me to supplement but I don't know what to do. I am trying to get into Stanford now.

Sarah

Oh no, the lowest we've ever gotten was about 5%. For the past year or so he's been following his own curve at a steady 25%. So does he have to reffer you to Standford or the primary? Good luck I hope you get in quickly.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,094
    • Most Online (within 30 mins)
      7,748

    Eva Ann
    Newest Member
    Eva Ann
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...