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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,230
    • Most Online (within 30 mins)
      7,748

    CarolfromSanDiego
    Newest Member
    CarolfromSanDiego
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
    • Betsy Crum
      I don't have health insurance so I have never had any testing done. I always thought if I stay away from gluten Ill be fine but I suppose that isn't enough anymore. I will look into getting an allergy test. Thank you for your input! 
    • trents
      I remember reading an article summarizing testing done by Gluten Free Watchdog on several brands of dried lentils. They were all heavily cross contaminated with wheat and the commentary was to the effect that dried lentils in general were the most heavily cross contaminated product category in their testing data base. So, I would definitely not use any dried lentil product that was not tested to be Gluten Free (<20ppm of gluten) or Certified Gluten Free (<10ppm of gluten).
    • Scott Adams
      While spices, lentils, beans and chickpeas are naturally gluten-free, the main concern with any brand is cross-contamination during processing and packaging. Since Suraj doesn't appear to certify their products as gluten-free or use dedicated gluten-free facilities, there is some risk of trace gluten exposure, especially with their corn flour which could be milled on shared equipment with gluten-containing grains. For absolute safety, I'd recommend looking for brands that are certified gluten-free by organizations like GFCO - good options include McCormick for spices, TruRoots or Bob's Red Mill for lentils and beans, and Anthony's for corn flour. That said, if you need to use Suraj products, be sure to carefully check labels for any wheat warnings, thoroughly rinse lentils and beans before cooking, and consider contacting the manufacturer directly to ask about their gluten testing protocols. Many in our community have found that investing in certified gluten-free brands gives them greater peace of mind and helps avoid accidental gluten exposure, especially for higher-risk items like flours.
    • Scott Adams
      Dapsone, commonly prescribed for dermatitis herpetiformis (the itchy gluten-related skin condition), comes with several potential side effects that patients should monitor. The most frequent issues include blood-related problems like hemolytic anemia (especially in those with G6PD deficiency, which is more common in certain ethnic groups) and methemoglobinemia that can cause fatigue, shortness of breath, or bluish skin. Many patients also experience headaches, nausea, dizziness, or skin sensitivity to sunlight. While these effects are often manageable, there are rare but serious risks including dapsone hypersensitivity syndrome (with fever, rash and organ inflammation), liver problems, or severe anemia that require immediate medical attention. That's why doctors typically monitor blood counts and liver enzymes regularly during treatment. A crucial tip: proton pump inhibitors like omeprazole can interfere with dapsone's effectiveness, so discuss all medications with your doctor. If you develop fever, unexplained fatigue, yellowing skin/eyes, or a spreading rash while on dapsone, stop taking it and contact your healthcare provider right away. For celiac patients specifically, remember that strict gluten-free eating may eventually reduce or eliminate the need for dapsone to control dermatitis herpetiformis symptoms over time.
×
×
  • Create New...