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

Gluten-Intolerance Dx

MacieMay

Recommended Posts

MacieMay Explorer
MacieMay
Posted

My 21 month old has been dx with gluten-intolerance. We have been strickly gluten-free for a few months now and she is doing so much better. I'm just wondering how common this diagnosis is? We know she is not Celiac because she had the full work up and has had the gene testing. We have kind of been dismissed by GI and I'm wondering if we should follow up with allergist, who maybe down the road could do a food challenge. i don't know??? I'm not really sure where to go from here besides staying gluten-free for now. I do think the gluten-intolerance is something she could out grow. Her two older sisters are healthy and have no food allergies or intolerances or autoimmunes. She was 3 weeks early and I'm thinking maybe her GI system just need some extra time to mature. I don't know? Does anyone have a crystal ball? lol!

Thanks!

Malyssa

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


enolah Rookie
enolah
Posted

I hope you get some answers to your question, because I have similar questions. My dd is much older than yours, but for now we are assuming she also has non-celiac gluten intolerance. She also had a negative workup including biopsy. Her genetic profile does put her at risk for celiac, however, and she had two stool tests showing fat malabsorption.

I'm glad your dd is better on the diet. Mine is not completely better.

Link to comment
Share on other sites
mushroom Proficient
mushroom
Posted

While current medical opinion is that approximately one in one hundred people has celiac disease, the prevalence of gluten intolerance to varying degrees is estimated by some researchers, including Dr. Rodney Ford, to be as high as 30-40% of the general population. 97% of celiacs are estimated to be undiagnosed, so you can imagine how many undiagnosed gluten intolerant people that leaves circulating in the general population.

Then you have the difficulty of getting accurate diagnoses in children under five. And the fact that they are finding new genes all the time that are associated with celiac disease and gluten intolerance. So there is a lot of gray out there amongst the black and white.

I think if I were both of you I would accept and be thankful that you have found what makes your children sick and how to keep them well. The children can later challenge the diagnosis if they wish by eating gluten, but at least you can be secure that you are doing what is best for them. :)

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748
    Grammar B
    Newest Member
    Grammar B
    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
      Waiting for urgent referral.

      By trents · Posted

      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
      50 YO Male Recently Diagnosed with Celiac Disease

      By Scott Adams · Posted

      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
      Waiting for urgent referral.

      By cristiana · Posted

      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
      Celiac Dietician

      By Denise I · Posted

      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
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      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...