Jump to content

JoyMurphy

Advanced Members
 View Profile  See their activity

  • Posts

    46

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by JoyMurphy

  1. JoyMurphy
    steph, I didn't grind it myself...I stayed away from it completely until the past month. It was bobs red mill. I just remember even on the diet, I was having more severe neuro symptoms...they were bad the past few days, along with the stomach issues...It may be a huge coincidence...but it's very suspicious to me. when i was so sick a few years back....
  2. JoyMurphy
    colleen, I have been tested for so many AIs. Nothing has come up possitive...I actually had a Rhuemy tell me that my high ANA meant nothing. That it was a phenomenon. I am a 640.....it has dropped to 320 but has gone back up and never goes below. I don't believe that it means nothing. If I was healthy and it was high, I could see that....but there is...
  3. JoyMurphy
    kareng I ate the rice cakes almost two years ago when I was severely ill. I haven't touched them since then. On the Fasano I ate only 100% natural foods, fruits and vegtables. Nothing with a wrapper, nothing touched by man. The one thing that increased was rice...it became the main staple. The rice was plain and prepared in the rice cooker with...
  4. JoyMurphy
    I have been trying to put all the pieces together since my diagnosis 1.5 yrs ago. I have been having lingering neuro symptoms that no one can figure out. I have been checked for seizures, all other autoimmunes etc...and of course, my file at the hospital needs it's own zip code. I know there is something else wrong....could it still be the damage from...
  5. JoyMurphy
    I am obsessed with their lipsticks. they always look so good! the hibiscus grew on me.....it's dramatic
  6. JoyMurphy
    I love nuts.com They are so prompt! I order and it seems like I turn around and it's there! mmmm pistachios! And they have gluten free almond paste for holiday baking.... can never find that anywhere...last year I had to make it myself
  7. JoyMurphy
    oh, I have said some very inappropriate things.....Oh my.....afterwards I just think about it, and think....omg what did I do? It's just very odd. The frustrating thing with this disease is there is no certainty...no exact manual...no one path.....we all have different and overlapping symptoms and severity's. support groups like this keep me grounded...
  8. JoyMurphy
    Steph, unfortunately for me, I bought my truck load of glutenberg 2 weeks before they put me on the Fasano. Sadly, it has all sat there in the fridge alone. I came to the end of the Fasano a few months ago. Since then I have been very careful about bringing things back. I have though enjoyed a couple glutenbergs since then, with no problems. Sadly for...
  9. JoyMurphy
    daura is delicious but it gave me an instant headache...too many ppm.
  10. JoyMurphy
    you can get glutenberg in boston. New England def has it. Other areas not so much yet. Not a fan of the American Pale Ale, but I don't like IPA and the red...it;s an aquired taste....but the Blonde....YUM!!!!!!! And a cool oil can too! I drove from Plymouth to Stoneham the day they got it in and cleared them out. Now a lot of places have it. Some...
  11. JoyMurphy
    hi, you don't have diarrhea, just constipation? That still can be a sign. I had diarrhea, bad...but my daughters, both of them had severe constipation. The one with the less severe symptoms tested high on the blood test and had a lot of damage in the endoscopy. The one with the worse stomach problems tested fine on both, but has the gene. They told...
  12. JoyMurphy
    I have actually been gluten-free for one year and nine months, but who's counting. I was diagnosed one year and five months ago.... I have recovered to some extent. I can function better. But I am not the same person I was. I am hoping that will come in time, or if there is something else wrong, some doc will figure it out....I have a lot of neuro symptoms...
  13. JoyMurphy
    I was worried about the coffee too. I know I am supper addicted to it, and I have actually increased the amount of coffee I drink. Good lord, there goes all the fun! TBH I would rather do things I can control rather than trying different types of meds.
  14. JoyMurphy
    I had a 55 lb weight loss in about 2+ months. I was losing a lb a day. Previously I had to be on weight watchers to loose anything. I was fit, did zumba and weight training almost every day. At my worst I couldn't lift the brush to brush my daughters hair. I would force myself to eat every day. All I could manage was a rice cake w/ PB, a small piece...
  15. JoyMurphy
    steph, I have found this to be true. Since getting so sick, I have been forced to be more creative in my cooking. I have always loved to cook. Always a cook, not really a baker....Now I'm a great baker too? My cooking has definitely evolved. Even with the Fasano, it forced me to be more and more creative. Some of my best recipes came out of cooking...
  16. JoyMurphy
    I just don't quite know what to do with the pcp right now. I feel like she is against me. Right now, I'm putting everything back into the celiac "basket" and looking into the restaurant possibility. The fact is that right now, none of the bloodwork is showing another AI..though I know that it can take up to seven years even to get an accurate celiac diagnosis...
  17. JoyMurphy
    You know, it's funny.. That was my second biggest fear next to losing the other grains.. It wasn't as bad as i thought. I will give it a try. Irish, i know what u mean about pursueing the ai.. I know there are dozens of ai's not just the main ones covered by the rheumy...but my pcp just throws up her hands and says she has no idea.... It makes sence...
  18. JoyMurphy
    I know.. I think you may be right...
  19. JoyMurphy
    I dont eat out very much anymore.. The restaurants that I tend to trust are far away. There is a burger place near us that has a dedicated fryer but im Very careful there. I wont even get the gluten-free bread... Its not worth it. The least amount of movement from grill to plate the better. I want to say maybe 2/3 x a month. Thats between maybe a...
  20. JoyMurphy
    Yes, i would be interested to hear what you have found with other sensitivities and low level exposures... I think that there is no way there could be contamination in the products that i use daily.. But how do i know that for sure? Because a list or a company said so? A list once said i could drink omission...lol.. Not so much. I need to look at this...
  21. JoyMurphy
    Irish.. I'm not sure... I feel like most drs try to downplay the seriousness of the infection.. But peoe die from it all the time.. And my friend had two daughters who developed autoimmune diseases after the infection. Maybe they are afraid of law suits maybe they are told to downplay.. Who knows. Its too logical to me.
  22. JoyMurphy
    He is.. I have a repeat endoscopy scheduled in jan. An yes that was the drug.. I did read that about the antacids so i dont think it would be good. So frustrating.. Of course, i know the mrsa was the infection that threw everything into play.. Dont know why they dont want to discuss that. I think it makes them nervous...pcp told me to stop throwing...
  23. JoyMurphy
    yes, I don't love the steroids. Dr. Leffler prescribed to help with the severity of my gluten exposures...I saw him friday, and asked him about a lot of this stuff. He did say that he has patients with the brain fluttering sensation. Not a lot, but some. Which thank god...b/c they neuro guy kept saying, what is that? I have never heard of that. Maybe...
  24. JoyMurphy

    ARCHIVED Doctors In Boston

    JoyMurphy replied to AJC's topic in Doctors

    I love dr. leffler. I am not to pleased with the other drs at BIDMC right now. He is the only reason I am staying.
  25. JoyMurphy
    hi, I too have high ANA. Mine is 640. I have been tested for everything under the sun. The Rheumatologist says, stop coming back here! You don't have anything in rhuematology.....They said sometimes people can have a high ANA for no reason. I don't buy it at all. It has gone down to 320 and now is back up....I don't know if that means there is something...
×
×
  • 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.