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

Question About Test Results- And Help Deciphering Foot Pain!


MitziG

Recommended Posts

MitziG Enthusiast

My 8 yo just had follow up blood work done 15 mos post dx. TTG was finally negative at 3 (last check was still elevated) EMA was still positive. They never did EMA on myself or dd, so I guess I am unsure if this is a test I can expect to stay positive, or will it eventually drop to 0?

Everything else looked pretty good- his elevated TSH dropped considerably and is now within normal- I attribute that to being casein free. It kept going up steadily for 10 mos prior to going off casein. I will keep an eye on it. TPO antibodies also dropped.

Hemoglobin was good, well within normal, and ferritin came up as well too. Total iron was lower though- anyone explain why? He was severely anemic a year ago so trying to keep tabs.

So, his depression and anxiety are gone, hyperactivity is much better, scotopic sensitivity improving...we are making progress.

The only remaining issue is the never ending foot pain. His feet hurt almost constantly, much worse if he is glutened. Now he complains about having electric shock sensations though in his feet. B12 is very good, A E, D and K are also good.

His doctor seems to dismiss it...but I am not. What should our next stp be? Podiatrist or neurologist?


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



Celiac.com Sponsor (A8-M):



Happyw5 Explorer

Where does his foot hurt? My son complains of foot pain in his heel and goes up his leg a little. I took him to the dr and they said it was just growing pains. I don't know if I believe them!

MitziG Enthusiast

It is the soles of his feet, mostly the ball. And I don't believe growing pains exist! When I get glutened, my feet and legs ache so badly I have to soak in a hot bath for hours, just to keep from crying!

Sesara Rookie

I know that other parents on here have talked about their kiddos getting diagnosed or looked at for JRA before finally getting a Celiac diagnosis, and it turned out that the gluten was causing painful joint inflammation very similar to RA.

However, growing pains are very real. My husband would get them, always at night, usually in his feet, knees, hips, and lower back, and then he would shoot up or change shoe sizes in the next several days. My son used to get them too, and has been showing some evidence of them in concurrence with this growth spurt we are finally having after a year of no growth. His are all in the same places as my husband and he only complains to me about them at night, and I can tell that he has just outgrown his 18 month onesie in a few days, so I really do believe it is from growing.

However, if your kiddos complain of them and then don't grow, they are probably not growing pains, which are very specific.

MoMof2Boyz Enthusiast

Has he been checked for lyme disease?I *think* I've read about some people getting those electric shock feelings...just an idea!!

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

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

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term 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.