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 Celiac.com!
    eNewsletter
    Donate

Other Hypermobiles Anything I Can Do?


ravenwoodglass

Recommended Posts

ravenwoodglass Mentor

Hi, I have posted before about benign hypermobility or Ehlers Danlos. I have the latter. I was glutened last week which causes my joints to swell with fluid. Anyway I have dislocated my feet and/or ankles every night this week. Night before last I had a hard time getting my ankle back in place so had a pretty miserable day yesterday. It finally snapped back late yesterday evening. Does anyone know of a way to prevent this other than the obvious avoidance of the demon gluten? Is there anything I can do to quicken the dispursal of this fluid. I am kind of grasping at straws here. I don't sleep well wrapped up like a mummy in ace bandages :(

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



sillymomx3 Newbie

Just posted to your other post about EDS. I have no connection that I have noticed to gluten & dislocating. However, my son has to wear smo & dafo braces to keep his knees from dislocating. I have been so used to it all my life I just pop myself back in & go. Best of luck & as I have to tell myself on many days... Don't get glutened!

Christi

Link to comment
Share on other sites
nogluten- Newbie
Hi, I have posted before about benign hypermobility or Ehlers Danlos. I have the latter. I was glutened last week which causes my joints to swell with fluid. Anyway I have dislocated my feet and/or ankles every night this week. Night before last I had a hard time getting my ankle back in place so had a pretty miserable day yesterday. It finally snapped back late yesterday evening. Does anyone know of a way to prevent this other than the obvious avoidance of the demon gluten? Is there anything I can do to quicken the dispursal of this fluid. I am kind of grasping at straws here. I don't sleep well wrapped up like a mummy in ace bandages :(

Hi. Sorry you're having troubles. You might want to see a podiatrist to see if you would benefit from orthotics for your shoes. They really help keep everything supported. Once you're doing a little better it's important to have very good posture and to strengthen the muscles supporting your joints. I had physical therapy to show me the correct postures and exercises. You have to be careful about stretching, as I'm sure you've discovered. Good luck and get better soon. x

Link to comment
Share on other sites
Guest Robbin

I'm sorry you have had such a bad time. I hope you are feeling better. I get a lot of fluid retention around my joints. I always thought it was from the fibromyalgia. Anyway, when it gets bad I guzzle iced tea or hot tea--maybe 4-5 glasses/cups ( or more depending on how bad it is) in the morning/afternoon and by evening after all the bathroom trips, it goes down. I know tea is a natural diuretic and if you're like me, you don't want anymore drugs than necessary. I hope that helps. I usually drink decaf or 1/2 and 1/2 to avoid too much caffeine.

Link to comment
Share on other sites
tarnalberry Community Regular

edited 2/22/06 - deleted post because it was bad advice. ;-)

Link to comment
Share on other sites
ravenwoodglass Mentor

Thank you all for your replies. Things are finally getting a bit better. I did up my fluid intake a bit it seems to help clear the toxin out a bit faster and keeps my pee from burning as much. I also decided to see if my orthonics people can make me soft braces to help keep my foot and ankle bones in place. I switched GP after my diagnosis and haven't seen him since I 'introduced' him to celiac (my gosh 3 years with no dr. visits!), can't wait to see his face when I ask for this referral. Guess I'll wear a dress so I can demonstrate the backward bending knees easier :D .

Thanks again everyone.

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
      121,091
    • Most Online (within 30 mins)
      7,748

    Grammar B
    Newest Member
    Grammar B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...