JoyMurphy
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by JoyMurphy
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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....
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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...
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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...
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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...
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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.
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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...
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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...
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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...
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I know.. I think you may be right...
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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...
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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...
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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.
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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...
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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...
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Reaction To Buckwheat?
JoyMurphy replied to sandsurfgirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
i have heard of celiacs reacting to buckwheat. I've been fine in the past using it. Someone had mentioned a gluten-free bakery that they can't go to anymore b/c they are so sensitive and the baker started using buckwheat and they were reacting to it. -
irish, i'm back b/c I miss you. yes it's me. The exposures...one last November...I used the wrong seasoning packet in my crockpot...I bought it w/o double checking the ingredients b/c I thought I used it before and it was fine. WRONG....within 45 minutes I started to get sick. The stomach issues subsided within the first few days and I was left a waste...
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Nicole, I asked to see the endocrine doc, I was worried that my blood sugar seemed a bit low, my PCP wasnt concerned, but she did give me the referal. The ED was not thrilled to see me and wanted to know why I was even there. Again, everyone tells me that my high ANA means nothing. He did check a few thyroid labs, and my cortisol. He called and said...
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SkyBlue, have you felt in inside your head?
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Hi Arlene, These things definately were present and worse at the time of a gluten reaction. But they continue when there is no gluten reaction. My gluten reactions are pretty severe and last approx 5 weeks. I haven't had one for a while. That's not to say that there couldn't be traces that get through in a restaurant here and there, but I don't really...
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I have been gluten free since Feb 2012. Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted. To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease. Now I'm not sure. The dr.s have no clue and I believe they are ready to send me for a psych consult...