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

Confused


Amooliakin

Recommended Posts

Amooliakin Apprentice

I read two things that seem to contradict each other. I'm wondering if they are both true but for different people.

One said that it is common to go gluten-free for a few years as a kid, then let gluten back in the diet with no symptoms. The book was explaining that no symptoms does NOT mean no Celiac disease. But I had not heard before of symptoms disappearing with age.

On the other hand, I hear a LOT from people who had less symptoms BEFORE going gluten-free and who find that after they have gotten all gluten out of their bodies they have a much STRONGER reaction to even tiny amounts.

So which is true?

Or can it be both?


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

I believe it is both.

It makes sense because they describe celiac as a medical chameleon. Some people are 100% asymptomatic, others are debilitated and have every symptom, and most fall somewhere in between.

So yes, it is possible to have reactions sometimes, and others not. But, like you said, the lack of symptoms does not mean celiac is not there (proof: Asymptomatic celiacs with completely blutned villi)

And yes, some people who get gluten out get increasingly sensitive (I am a lucky one of those people).

mommida Enthusiast

Both are true.

In the old days, they thought children outgrew Celiac because the symptoms lesson.

Since going gluten free my symptoms of accidental glutening have been worse in my opinion. (To explain all of that would be TMI.)

L.

happygirl Collaborator

isn't it interesting what docs "used" to know...

Nantzie Collaborator
isn't it interesting what docs "used" to know...

Are you suggesting that leeches AREN'T gluten-free??? :lol:

I'm going to have to rethink my HMO...

B)

But seriously folks...

I think I read the same book. They said that during adolescence that the symptoms can lessen. I think at this point they're not sure if it's a true remission, where no celiac or intolerance is present and no damage is being done at all, or if it's still damaging you, but just not showing outward symptoms.

Nancy

Saz Explorer

I've never been somone to get sick on just a piece bread, however even I have always had my limits.

When I was younger my limit was a lot less than what was since I was prolly about 14, howver even I have been able to eat more gluten in my teens, I most def still have limits.

From what I have read tho, this doesn't mean its not hurting you - I think it is much like a smoker, Just because it doesnt effect you immediately doesn't mean that it is not doing any damage.

I have heard of people who are allergic to gluten but after following a gluten free diet for a year or so can eat it again and they don't have problems.

almostnrn Explorer
Both are true.

In the old days, they thought children outgrew Celiac because the symptoms lesson.

Since going gluten free my symptoms of accidental glutening have been worse in my opinion. (To explain all of that would be TMI.)

L.

I had a clinical intstructor in nursing school try to tell me that this was the case with her. How do you correct your professor and the keeper of your clinical grade?! I tried to test the waters and she wouldn't hear of it...there was no way she could be wrong and her student was right. I let it go quickly, lol. Although that does explain a lot of her mental instabilities! :P


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Danna Korn has mentioned "the honeymoon phase" in her book Kid's with celiac disease. There are other documented sources out there.

Wait until your grade is in, set in stone, and then drop off an information packet to this "teacher". ;)

L.

Amooliakin Apprentice

I know I am going off the topic now... but you bring up an interesting phenomenon. Now that I know about celiac, and we are taking care of our daughter in the right way, I find there are SO MANY adults who I meet who think they outrgrew celiac years ago, or their adult kids did, etc. They do not want to hear differntly - and I don't know them well enough to tell them the truth. I wish there was one simple booklet that I could hand out instead of trying to explain it or refer them to books they don't want to read or web sites they don't think they need....

Tim-n-VA Contributor

Doesn't some of the confusion come from the fact that you can outgrow an allergy and a wheat allergy could have very similar outward symptoms to celiac?

Lisa Mentor
Doesn't some of the confusion come from the fact that you can outgrow an allergy and a wheat allergy could have very similar outward symptoms to celiac?

Yes, most likely. Some many out grow an allergy, but an intolerance, never. <_<

lindalee Enthusiast

I was a celiac baby and thought I outgrew it until this year. I don't understand why symptoms are hidden. I have heard that smoking hides the symptoms.

Archived

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

  • 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. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

    2. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    3. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    5. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,957
    • Most Online (within 30 mins)
      7,748

    konny heigle
    Newest Member
    konny heigle
    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

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.