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

Just A Question...


Jamie

Recommended Posts

Jamie Contributor

I am probably going to be posting a lot of weird, important or even stupid questions for a while... I was just diagnosed, am just starting the gluten-free diet and still have a whole lot to learn. So I would appreciate any help.

Anyway.. I have been on this diet officially since Tuesday.. and one thing I noticed was appitite change....

When I was diagnosed through blood work back in Dec.. I went gluten-free for about 3 weeks or so.... then I had to go back on a regular diet for a month and a half before the biopsy.... while I was eating a regular diet.. I noticed I gained 10 lbs and I lost my appetite completly. Now that I am gluten free.. I have a huge appetite. I feel like I am constantly hungry oh my god. I thought it was the opposite way around.. where as.. you are hungry while eating gluten because your body is not absorbing anything... and not as hungry when you are gluten-free because your body is absorbing everything finally. I don't feel any changes in weight yet... but I do notice that Im not getting sick and bloated after I eat.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Hi Jamie -

Its not just you. Open Original Shared Link

"Q: I feel hungry all the time. Is that normal?

Yes, it is very common. Your body is making up for the time it wasn't fully absorbing foods. Hunger levels tend to normalize within the first months after eliminating gluten and beginning a well balanced diet of gluten-free foods."

  • 4 weeks later...
hannahp57 Contributor

don't worry. i think everyone has a different experience. for me, I lost my appetite while I was still eating normal food because it hurt SO much to eat. I cannot even describe it, but if you have the gastro symptoms you know exactly what I am talking about. But after switching the diet to gluten free, i thought my appetite would return and it didn't. It still hurt to eat and i was worried that yet again, the doctor was wrong. I talked to him about it and he said that many different things happen after a celiac changes diets.

1. in my case, your body is damaged and when it tries to digest and absorb with the villi still being flattened, it is going to hurt and that i should add things back slowly. starting with fruits, ten veggies, then gluten-free grains, then meat. understand that about four months before my diagnosis i had stopped eating entirely. to make my family happy i ate about 1/4 of a cup of jello....a day. if i could. so going back to eating was hard. and i didn't like it.

2. in some cases, the body will crave because of the lack of nutrition prior. which is a good thing, i think. it means your body is digesting those things!

i can tell you from experience after a few months, when i began eating more normally i gained about 30 lbs. then after that, with a few more months of my metabolism balancing i lost 10 of them which put me at 120lbs at 5'8''

so weight fluctuation, appetite changes, all these things happen to a lot of us. and im sure other things that i didn't experience as well

how long have you been gluten free?

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. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,800
    • Most Online (within 30 mins)
      7,748

    CPeck
    Newest Member
    CPeck
    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

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.