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emma6

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emma6 last won the day on January 25 2017

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  1. emma6
    emma6 changed their profile photo
  2. emma6
    same stairs and squatting are the absolute worst for me. for pain relief ice and ibuprofen gel are the most helpful for me. for me exercise wise, i've given up on most of the physio exercises and am doing the most i can of movements that don't aggravate the pain. walking as much as i can and exercising as much as i can but stopping a soon as im in pain. im...
  3. emma6
    Yes i have celiac been gluten-free for 10 months, had an iron deficiency (was hoping that was the cause of knee pain) and am being treated for suspected sjogrens syndrome. im surprised they didn't do other bloodwork for you, one of the first tests i had in relation to joint pain was for rheumatoid factor, ANA and a few other arthritis type diseases. ...
  4. emma6
    i have a very similar experience i never injured my knees. started getting mild joint pain in 2012 was told it was PFS and given exercises, they didn't help and caused me alot more pain. then in late 2015 its started to get worse saw a new doctor, got xrays and an mri and said PFS and sent me to a physio. the physio pushed me extremely hard on the first appointment...
  5. emma6
    thats so funny i can imagine you walking through the store haha im very over sensitive to alot of smells like paint, perfumes, candles which make my allergy symptoms worse but it still persists 24/7 regardless of where i am or what im doing. that's very interesting yes i'm still hoping i will have some improvement from treating celiac even if its minor...
  6. emma6
    @Jmg thanks for the link, i didn't know you could have refractory celiac even with normal antibody levels. i thought i was out of the danger zone with that one. i've already taken eating whole foods while avoiding gluten and cross contamination to the absolute extreme because with every month i wasn't getting better i thought there must be a tiny...
  7. icon emma6 reacted to a post in a topic: advice for autoimmune immunologist appt
  8. emma6
    thank you so much Gemini, my appointment went really well, he straight away suspected sjogrens syndrome before i even had a change to bring it up!! he found markings on my legs called livedo raticulitis which i was unaware of and the rash i assumed was DH, he thinks is something else although i didn't catch the name of it. he also thinks my poor circulation...
  9. emma6
    thanks i've been tested for vitamin deficiencies recently and am still taking vitamin supplements. i had very low iron and borderline vitamin d last year, they are in the normal range now but that hasn't changed any symptoms, if only it was that simple.
  10. emma6
    thank you! thats so true. the written referral is only two sentences which barely describes 5 percent of whats wrong. they wouldn't let me make an appointment for months because the referral listed fatigue first and "they dont see people with chronic fatigue" but my fatigue is so mild its the least of my problems. thats good to hear im dairy free aswell...
  11. emma6
    thank you for the suggestion. i will definitely ask the specialist about that, i actually asked a doctor about sjogrens testing a few months ago but since i don't have dry eye symptoms they dismissed it right away. thank you so much i'll definetely look into it
  12. emma6
    does anyone know what to expect from an immunologist appointment? i can't seem to find much information about what they do besides allergy testing. are there any questions or blood tests i should ask for? it took months to finally get an appointment and i'm so nervous its going to be a waste of time like every other specialist i've seen. especially...
  13. emma6
    did they check your total iga to see if you were deficient? that might explain having normal ttg iga and high ttg igg. it might be worth asking for the hla gene test as well
  14. emma6
    i don't see the point of posting this. you don't know their life and making snap judgements when someone is asking for help is only going to make them feel worse. honestly eating gluten free is the easiest part. what sucks is the horrendous symptoms and associated diseases that have made me being unable to work, study, drive, exercise, travel and socialise...
  15. emma6
    yes i understand. i chose not to have an endoscopy as my blood result were extremely high, positive gene test and i have no Gastro symptoms. i personally don't think there is anything wrong with going gluten free first and then checking if blood tests nomalize as the pros of an edoscopy don't outweigh the cons for me but thats just me, everyone is different...
  16. emma6
    i would ask for an EMA blood test at the same time that might provide some more information what are her symptoms?
  17. emma6
    hey, i'm vegetarian and gluten free as well have you tried making any recipes with cashew nuts like cashew cheese or pasta sauce? they're really good, easy to make and an excellent way to get more protein/iron i can send you some of the easy recipes if you like
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