Jump to content

helen albanese

Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About helen albanese

  • Rank
  1. 2kids for me; It was encouraging and sad to hear from someone with children that have similar problems. My older girl: dx with adhd however had shades of aspergers and still does, repetitive language, obsessive behavior but all are marginal. glutengirl: she had the ct with contrast, definitive test is an mri to check for microadenomas: her insurance didn't approve it. I looked up acquired cutis laxa: thank you for the info; thankfully it doesn't fit. Lately, my daughter has stopped lactating and has amenorrhea. she is scheduled for cornell in nyc on 3/7 with endocrinology and bld work next week before she goes to check the prolactin levels. her headaches stopped and she says she feels her mind has cleared, I'm sure we can all relate to that. I just had a "bout" of gluten contamination at a favorite restaurant with a new waitress. When I sent back "the wrong order, waitress informed me that I had ordered just that- I told her she was wrong and I had actually pointed to my order on the menu-I'm pretty sure she transferred the toppings to the new order and it was a heated item. I shared the dish with someone else and he didn't get sick but he is gluten tolerant.I got two days in bed doubled over with swollen joints and cramps not to mention the, ahem, "loss of electrolytes" and muscle spasms. this is day3. Having run several marathons, I can actually say that I feel like I am recovering from a marathon, got the empty unfocused feeling in the front of my head and the slow moving muscle response. I called the restaurant and spoke to the manager and asked her if that was what actually happened and she said she was there 11 years and has never seen anyone do that, the answer I got was not the one I wanted, all she was interested in was absolving herself of responsibility- i'll never go there again.... the food world gets smaller.
  2. My 17 yr old is at issue with celiac which at this point of her life seems like a mild issue. Since the celiac dx, she is also Factor 8 hemophiliac w/the advent of her period( as a child I just thought she was picking at scabs and bruising easy-"delicate child" syndrome,as we Italian see it), Van Willebrand Disease and Ehlos Danlos syndrome (non-vascular). She was on suppression therapy for three years- Loestrin bid produced gluten free, and then started having headaches june of 06, vision problems, mood swings, overactive libido 12/06. She has developed amenorrhea 12/06 also and started lactating-prolactin spiking from 35 to 80. Lactation stopped about two weeks ago and clumps of her hair fell on Sunday- now there are stomach pains and gi gurgles constipation
  3. My older daughter seemed to be headed to Autism- she was becomming withdrawn, sensitive to sounds, touch, rocking, violent outburst, her speech was disappearing. She had been a normal, active child until I weaned her from breastmilk at 12 mos, that's when the symptoms became more overt. That's the time my ex inlaws decided to fatten her up with pasta. By eighteen months,the celiac dx was made in NYC at St Vinny's. Thirty days later, I had my daughter back.... She has ADHD, dyslexia, shades of AS, however: she is mainstream- college, career, independant, driving, reading incessantly-I refused to accept a dx of emotional disturbance and special ed classes. I was fortunate enough to be in a position to dedicate time and energy and patience to her. My younger girl manifested differently, testing neg on the duodenal bx-eventually tested with bld test and coming up positive.Raised in a gluten free environment, gluten came into her life at her dad's house and again at my ex in-laws on visits. she assumed that she was gluten free, however because she fell off the growth curve, i had her to every dr. to find out before puberty. She was dx with celiac 16 mos before the onset of puberty-she was a size 6x at 11.5 yrs old and still had all her baby teeth. after dx, she grew to 5' in 16 mos and went to almost normal body size although she has a size 4 foot. Does a dx of AS/autism need gluten-free diet, would it hurt? Why do we have to have a cut/dry answer to our medical issues, since we are random genetic variables, shouldn't our medical care be tailored to our genetic differences PS:i was dx with cs @ 45 yrs old after mis dx all my life-different symtoms
  4. I have been in the gluten free environment for 25 yrs since the birth of my first daughter and lost a world that I felt everyone could live in except my daughter. Since that day, I have been diagnosed, my second daugher, their father, grandparents on both sides, friends have sprouted the condition and now more people live in our world. I am of the ilk to encourage pre conception counseling, seeing a geneticist pre pregnancy and talk about autosomal genetic transmission. We are fortunate enough to live in an environment that provides alternative venues and is receptive to testing. Receptivity to celiac issues and tolerance to the domino of symptoms is encouraging compared to when my daughter was excluded from sleepovers and play dates, parents were afraid to have her over so avoided her and her issues. While in Europe this past summer, I was amazed at the availability of products and knowledge that everyone seemed to have about gluten (I visited 4 countries). My daughters and I felt so normal there. America is catching up. Testing is only as good as the provider and there in lies the problem, get the right doctor-we are now at Cornell in NYC at the pediatric gastro center. Helen
  • Create New...