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

Feels Like Growing Pains?

catfish

By catfish
in Related Issues & Disorders

Recommended Posts

catfish Apprentice
catfish
Posted

I wasn't sure where else to put this, but since I've been gluten-free I've started having skeletal pain, particularly in my legs, ankles and shins. I'm 33 years old but it hurts exactly like growing pains which I haven't had since childhood. I'm wondering if this could be caused by my body metabolizing calcium unlike it has been able to do previously. Are my bones making up for lost time? Has anyone else experienced anything like this or is this probably just an unrelated problem?

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

Celiac.com Sponsor (A8-M):


flagbabyds Collaborator
flagbabyds
Posted

I had pains exactly like that but about 10 times worse and couldmn't walk for 2 omnths

lyndszai Apprentice
lyndszai
Posted

Im getting pains like that all the time now they started when I went back on gluten for my test ive had them for 11 days now and it really hurts.

strack2004 Rookie
strack2004
Posted

Catfish, I still don't know if I have celiac or not, but I do have ankle, heel pains especially in my right foot that are driving me up a wall. I also have shoulder aches and aches in my hands. Since I am older (76 yesterday!) I have thought these to be arthritis. However this heel pain always gets worse when I eat more heavily of gluten. I have been tested for celiac with the blood tests at Mayos, they are in the very low negative range. Am debating whether to go with the diet anyway since gluten does seem to affect my heel/ankle pain. Have had that before and had cortisone shots. Don't want to do the shots anymore. Also may explore further testing at entero labs or possibly ask to have a biopsy at Mayos. I remain on the gluten until I get some more information. I have also begun to have shin pain . Don't know if this addresses your problem or not, the ankle, shin pain caught my attention. Cheers, Strack004

karen149 Rookie
karen149
Posted

Hi,

This is happening to my daughter right now. She's only 3, but I called her endocrinologist yesterday with the same question. My daughter cries that her arms hurt and she is waking up at night with pain. The doctor said it is most likely her system getting back into growing mode and starting to absorb nutrients. :)

  • 3 weeks later...
erica Rookie
erica
Posted

Hi, I actually have this problem when I am not off gluten. I had it for years before I knew I had celiac disease and it stopped when I went off gluten. I am now back on gluten for a short period to have an endoscopy and within 2 weeks of eating it again, my leg pains came back.

Archived

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

Go to topic listing

  • 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. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    2. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      Food and environmental allergies involve IgE antibodies. IgE antibodies provoke histamine release from mast cells. Celiac disease is not always visible to the naked eye during endoscopy. Much of the damage is microscopic and patchy or out of reach of the scope. Did they take any biopsies of your small intestine for a pathologist to examine? Were...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      High DGP-A with normal IGA

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting! The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
×
×
  • 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.