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

When Did You Notice A Change

Minette

Recommended Posts

Minette Contributor
Minette
Posted

I know I'm probably being impatient, but I'm just curious. Sarah went gluten-free 10 days ago and I haven't noticed a single change in either her behavior or her health (from what we can see). I assume it's too soon for her to gain weight, but I was hoping she would at least have more energy, be a little less whiny, and have a better appetite.

I know some of it is personality and some may be due to external factors (i.e., not getting enough sleep) that have nothing to do with celiac. And she was never acutely miserable, so maybe the change will not be that dramatic anyway, if it ever comes. But I'm just wondering when it might be reasonable to hope to see some difference.

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

Celiac.com Sponsor (A8-M):


Mizzo Enthusiast
Mizzo
Posted

We saw reduced tummy pain in a few days but it took almost 2 months for all of her anxiety, mood swings , constipation etc.. to fully subside.

Every week my DD got a little better but really it took a few months for all of her daily problems to go away.

Link to comment
Share on other sites
Mom2J112903 Newbie
Mom2J112903
Posted

We saw a gradual improvement over a YEAR. Now as soon as he injest gluten, it is within 12hrs we see the reaction starting.

Link to comment
Share on other sites
MitziG Enthusiast
MitziG
Posted

It was very, very gradual for my son. When he was dx with celiac, I thought going gluten-free would make an immediate difference, but it didn't. But, a year and a half later he is a different little boy. He is happier, better behaved and his sensory processing disorder is greatly improved. The tummy aches are few now, and no longer severe. About 7-8 months in before I could really see noticeable improvement. His antibodies took over a year to come down, and he had severe villi damage (Marsh 4) so I think healing was just a long road for him. He still has a few issues, but removing casein from his diet a few months ago seems to be the additional boost he needed to heal. Be patient. While some people see a night and day difference right away, I think for the majority it takes quite some time. I know for myself, I didn't feel noticeably better until around the 7 month mark either. Has Sarah been dx with celiac, or are you trying the diet to see if it helps her issues?

Link to comment
Share on other sites
Minette Contributor
Minette
  • Author
Posted

Has Sarah been dx with celiac, or are you trying the diet to see if it helps her issues?

She was officially diagnosed about two weeks ago after her scope. She had a "probable" celiac dx based on blood tests back in March, but it took us a while to get through the rest of the process.

Thanks for the replies!

Link to comment
Share on other sites
MitziG Enthusiast
MitziG
Posted

She apparently has significant damage then, and I would guess, like my son, you aren't going to see big results for awhile yet. The healing has to happen first! Don't be discouraged, it will happen!

Link to comment
Share on other sites
Minette Contributor
Minette
  • Author
Posted

Coincidentally, my husband just sent me her pathology report, which said "moderate to severe villus atrophy (modified Marsh type 3B)" in one spot and "severe to complete villus atrophy (modified Marsh type 3B-3C)" in another. So I guess it could be kind of a long road.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      125,219
    • Most Online (within 30 mins)
      7,748
    Screamingbeamon
    Newest Member
    Screamingbeamon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Lockgirl
      Does anyone know any good gluten free lip balm?

      By Lockgirl · Posted

      I have been using their toothpaste and some of their other products that are labeled gluten free. Sorry about that. It is so frustratingly hard to get clear answers from companies on gluten content.   
    • Beverage
      Does anyone know any good gluten free lip balm?

      By Beverage · Posted

      I've been using eos lip balms. I usually get it at costco. Eos has little round balms, but also stick ones like chap stick. Costco has both. They are labeled gluten free when you buy individual balms, but the combo package from costco isn't always labeled gluten-free. The company web site says they are gluten-free. I'm pretty sensitive, I use the balms all day every day, and haven't had any reactions. 
    • Beverage
      Does anyone know any good gluten free lip balm?

      By Beverage · Posted

      Last time i checked, Burts Bees does not label anything gluten free. They had 1 lip balm that contained gluten, and their site said their products can be made on shared equipment. 
    • cristiana
      13 y/o new celiac dx and joint pain

      By cristiana · Posted

      I had rib pain, but also hip and leg pain - google sacroiliac pain, it's common in coeliacs. SI joint pain affects the hip, buttock and thigh area.  When I had it at its worst it was incredibly painful, a sort of burning sensation. If this is what your child is experiencing, she may find it helpful not to wear tight jeans or waistbands.  Any pressure around the area exacerbated the pain greatly.  Also, I am sure the lower quadrant bloating I was experiencing at the time made things a whole lot worse, that internal pressure seemed to add to the pain.   One other thing is that it is important that your daughter wears the right shoes, avoiding very flat unsupportive soles or heels, and doesn't overdo exercise that jarrs the joints.  The good news is that for me it did get much better as my gastric symptoms improved, particularly the bloating - but it did take a few months.  You may find these links helpful: https://www.spine-health.com/blog/common-triggers-si-joint-pain-and-how-prevent-flare-up#:~:text=The SI joint can become,the joint to flare-up. https://pubmed.ncbi.nlm.nih.gov/19504097/ If your daughter is experiencing rib pain, that could be costochondritis.  I had that too, and a similar sort of burning.  Again, when my GI symptoms improved so did the pain.  Bloating will still kick it off from time to time. But I am glad you are having D levels checked, as low levels can contribute to joint pain.
    • Russ H
      Newly Diagnosed

      By Russ H · Posted

      Approximately 1 in 3 adults have neurological symptoms on diagnosis. The mechanism and pathogenesis is unknown. These normally go into remission on a strict gluten-free diet. Common symptoms are anxiety, slow thinking, 'brain fog', memory problems and headaches. Although I think I have had coeliac disease in a mild form since childhood, my symptoms suddenly became much worse in later life. Along with the gastrointestinal symptoms and fatigue, I developed a tremendous sense of doom, anxiety and paranoia. The diet can be awkward at first but becomes easier with time.
×
×
  • Create New...