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 Our Content
    eNewsletter
    Donate

New Here


happyfeet

Recommended Posts

happyfeet Newbie

Hi all, I'm new here. I'm still in the process of getting my 5 year old son, diagnosed with Celiac. Today at the GI dr. said the labs were inconclusive. I guess 1 out of 5 people have a protien in their blood that if it is on the low side can effect the outcome of this test. However, the 3rd part of it came out showing high numbers. The dr. had us do a repeat lab today and if the numbers are still high, he is going to do and Endoscope and find out for sure. I hate the waiting. :blink:

It would make sense if he did have it. He has loose stools all the time and has not gained any weight over a year. So while I'm waiting for the results, I thought I would find some others who are going thru this and get some info that might help me out in the long run.


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



Celiac.com Sponsor (A8-M):



Guhlia Rising Star

Definitely sounds like it could be Celiac. You may also see other symptoms that you didn't even link to Celiac disappear after he goes gluten free. I couldn't believe how "sick" I actually had been once symptoms began to disappear on the diet.

Even if the bloodwork comes back normal or biopsies come back normal, you may want to give the gluten free diet a shot, especially since he's symptomatic. Many people are gluten intolerant rather than Celiac. This means that their bloodwork comes back normal and their biopsies come back normal, but they're still reacting to gluten negatively. Hopefully you'll be able to get this thing sorted out soon.

If he does end up having Celiac or being gluten intolerant, don't panic. It really isn't as bad as it seems like it will be. There are replacement foods for virtually everything your son would miss. There are even amazing Oreo-type cookies and macaroni and donuts! Stick around here and there will be tons of support as you go through the transition. We've all been through the beginning stages at one time or another. :) Welcome to the board!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,018
    • Most Online (within 30 mins)
      7,748

    Alexandra Stevenson
    Newest Member
    Alexandra Stevenson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...