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Member Since 27 Jul 2012
Offline Last Active Apr 08 2013 12:04 PM

Topics I've Started

Could Use Your Advice Regarding Body Aches And Vitamin D

14 November 2012 - 09:31 AM

I have been feeling VERY achey for the last couple weeks. I went in and spoke with my doctor and told her my concern about my vitamin levels. She warned me that my complaints sounded like I was being cc. She did run my vitamin levels. My B was fine. She just emailed yesterday my D was low normal at 31 with the reference range being 30-80. She suggested increasing my d supplement. But now I am left wondering if I am so achey because of my d? Is that level low enough to cause aches and pain and fatigue?

Newbie Here, 11 Months Since Going Gluten Free And Still Bitter?

08 November 2012 - 09:59 AM

My name is Amanda. I am married and have 5 beautiful children. I first want to tell you all that it is SO wonderful to feel like I fit in somewhere. I just read the newbie 101 post and was like, "oh really?" ," that makes so much sense" I am going to print it out and read it so I have the words to use when I see my Dr next and she tries to tell me I have IBS along with Celiac because I can't tolerate dairy. Call it what you want, just don't try to medicate me for it!:) Anywhoo, a little about me, I have been sick for the last 5 years. Lots of appointments, and I believe I nearly lost my mind. Okay who am I kidding, I have lost my mind a few times. However, what I am proudest to announce is that when I quit eating gluten and the brain fog lifted, I had a clarity I have never had before. But, the big BUT here is that the road was horrible to get here, I don't present like the most common celiac patients do so, no one ever thought to go down that road. I have seen every specialist that there is and suffered such chronic pain that I had been labeled a drug seeker in the E.R.'s. I could never explain exactly what hurt just that something was very wrong and I felt HORRIBLE! I have suffered horrible constipation since I was a child. Most doctors associate Diarrhea with Celiac not constipation. So long story, long.....I laid in the hospital 1 year ago today for 16 days. My body was done......I had become Adrenal Insufficient, they assume from the steroid injections they gave me for my belly pain. I had battled the AI for months. I was taking steroids, injectable and po. I was dumping my nutrients into my urine but they couldn't tell me why. I couldn't get rid of the i.v. delivering fluids, and potassium replacements. My heart rate had become horribly tacychacardic.... again they couldn't explain it but I couldn't walk up the stairs without being completely out of breath. My heart rate was always over 100. They put me on a beta blocker to lower my heart rate. I was in the hospital because I couldn't' function without the I.V. every time they would turn it off I would pee out 2 times what I had taken in and always ended up sick and vomiting within a matter of hours. I had been admitted multiple times for I.V. fluids because I just couldn't stay hydrated. I had doctor after doctor tell me they didn't know what was wrong or how to fix it . I was treated with medications as a band aid for the physical symptoms I was having and various sedatives for the my emotional symptoms. I once read in my chart that a nurse felt it was my anxiety that was causing a lot of my symptoms and I should take more lorazepam. After being in one hospital for 12 days, I asked them if they had any plan on getting me home to be with my family and they said the only thing they could think to do was put in a port so I could have I.V. fluids at home. I requested a transfer to the U.W Hospital here in Madison. After getting to the U.W. they helped to brainstorm ways to get me home....as it was quite apparent to me I wasn't going to get a diagnosis but if I didn't get out of the hospital they were going to kill me. The beta blocker had jacked my blood pressure and I still felt like CRAP! They adjusted my meds and told me to drink gallons of fluids a day to keep up with hydration and sent me home, I was to follow up with Endocrinology and Nephrology. It became my mission to fix me. I reviewed every doctors note I could and every lab post I could. I stumbled over some IGG and IGA test results that made me scratch my head. They weren't horribly off but I had also really reduced the amount of gluten I was eating and it just didn't make sense to me that they were bordering ab-normal. It was a Friday, I called my FP doc and said I suspected celiac and it being Friday she said I had two choices, 1 come in for blood testing, and wait to be referred back to G.I. or 2.stop eating gluten. I stopped eating Gluten that Friday and by Monday I felt like I was a new person. I started to have a clarity like I had never known. My heart rate and feeling of pounding had started to subside, and I started to pee yellow again, not gallons of non concentrated urine. I actually was feeling hydrated for the first time in a long time. It was clear to me I would never look back, I had missed so much of my children's lives and normal life I wanted the doctors office to stay FAR away from me. My PCP said she respected this. When I explained my thoughts she said I was saying the same things her other Celiac patients said. I felt like I had been given a second chance. However, I was badly scarred......I had been told time and time again, it was in my head but twice had been admitted to a psychiatric unit and no medicine they could give me would take away this FOG and anxiety and depression. So fast forward to today.....1 year after that final hospitalization, I am BITTER. I should be thankful that I have the answer. I should be thankful that if I eat no grains, or dairy, I feel better than I ever have. However, I have lost a lot of confidence in my self, in my ability to know my own body. I question myself continually and dread having to go to the doctor or even having to call the doctors office for ANYTHING. I have a really hard time with vitamin absorption, I take A LOT of B and D and after months of supplementation I finally got back to the low end of normal limits. I am bitter that I feel alone. My husband is not a big supporter of me needing to have gluten free. Well he says he is and makes me awesome gluten free fried pickles, but than I turn around and between him and the kids I have mountains of gluten crumbs on my counter, in my sink,, etc. I keep my head up and do so well but then fall off the wagon so to speak and eat fast food that is CC or take just a bite of something I know has gluten in it. I should know better, I should respect myself more than that.....but again, I question myself. After being questioned by everyone for so many years of illness, I revert back to that mind set. Don't worry, I am in therapy....:) We are working through this trauma. So yesterday when I stumbled upon this forum, I had a peace of mind, a familiar connection and everything made sense. It felt so good. I vow I am going to try harder to be my own advocate from here out. I am coming off a couple weeks of bad glutening of being careless. I actually had an allergic reaction after eating in a restaurant Monday morning and my throat started to get tight and I had to take Benadryl . I fear I pushed my body too far. I had been crying for 3 days, extreme fatigue, and started with severe joint pain last night and it dawned on me, this is how I feel when my vitamin B levels drop. I put a call into my PCP this morning and the anxiety started again when the nurse called me back....why do I care what they think? I asked her if I would be able to have a vitamin B injection versus upping my sublingual because of how bad the pain is. I guess we will see what the day brings. If you made it through this entire post, bless you!! Is anyone out there still bitter?

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