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?

Link to comment
Share on other sites

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!

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,075
    • Most Online (within 30 mins)
      7,748

    Connie Conner
    Newest Member
    Connie Conner
    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

    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
    • trents
      As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.
    • trents
      10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.
×
×
  • Create New...