What part of the world is she in? Â Mary in VA What part of the world is she in? Mary in VA...
6583
Spring Sunshine
springeedingee
Jul 1, 2012 3:36 pm
Colorado Sent from my iPhone...
6584
Lisa Simmons
girlinchair_...
Jul 2, 2012 6:41 am
Thanks everyone for the input here. I think I will first write an email to my geneticist to get his exact idea into writing (dumb brainfog) and what he feels...
6585
Jo Barlow
jcbcanuck
Jul 2, 2012 7:52 am
Lisa I think this is a brillant idea. It is one thing that frustrates me more than anything is the disjointedness of all this and lack of...
6586
jcbcanuck
Jul 2, 2012 8:10 am
Hello. Taken a while to update on us. My son went back to the allergist for blood results. Turns out he has egg, nuts, seeds, grass allergies. I also think...
6587
Lisa Simmons
girlinchair_...
Jul 2, 2012 8:26 pm
Were you positive for tenascin- X or just showing the article? lol. Lisa ... Were you positive for tenascin- X or just showing the article? lol. Lisa On Jun...
6588
Lisa Simmons
girlinchair_...
Jul 3, 2012 2:56 am
Hang in there! I know how hard the food trials can be- I have done them several times over and also been tested for eospinophilic disorders by my GI via scope....
6589
twodogs8us
Jul 3, 2012 4:40 am
Hi, Lisa! Just wondering if you have had varying results on allergy blood tests. Allison 's skin pricks are always wacky and differ from time to time....
6590
mgc0724
Jul 3, 2012 4:41 am
Lisa, I haven't been tested for TenascinX. I just wanted folks to know that there now seems to be a marker for type 3. Gail...
6591
Spring Sunshine
springeedingee
Jul 3, 2012 5:52 am
Mine sure does! Just sent hair out fir testing. Spring Sent from my iPad...
6592
Spring Sunshine
springeedingee
Jul 3, 2012 6:16 am
What. Where Sent from my iPhone ... What. Where Sent from my iPhone On Jul 3, 2012, at 12:41 AM, "mgc0724" < mgc0724@... > wrote: Lisa, I haven't been...
6593
Jo Barlow
jcbcanuck
Jul 3, 2012 7:56 am
Thanks Lisa It is another piece of the puzzle. We are continuing to figure him out slowly but surely. He is better now than even a few weeks ago.  I am...
6594
Jo Barlow
jcbcanuck
Jul 3, 2012 8:00 am
Christina From what I have been reading about eosinphillic stuff you can have triggers which show up as true allergies like on blood tests. Then others that...
6595
Josie
josieevans
Jul 3, 2012 2:09 pm
My name is Josie Evans ,My area of interest is Mast cells as I have a mast cell condition .I don't have EDS or POTS .I wanted to ask the lead if I could post...
6596
Jo Barlow
jcbcanuck
Jul 3, 2012 3:13 pm
Hi Josie Lovely to "see" you here. You sure helped me help my son. We are doing well. Jo ________________________________ From: Josie <josieevans@...>...
6597
elephantcej
Jul 3, 2012 4:05 pm
Sry if this is not posting correctly. Has some links that skirt the issues brought up here by some on allergy testing, digestive issues, and mast cell. You'll...
6598
sarah4_ep
Jul 3, 2012 6:26 pm
Thanks for that, I posted it in the Links section....
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sarah4_ep
Jul 3, 2012 6:28 pm
Hi Josie, Please do post links to your website. Although many of us have an overlap of these three diagnoses we are all keen to learn in general. If you have...
6600
sarah4_ep
Jul 3, 2012 6:31 pm
Thanks for the update, Jo. I am finding food issues to be the most frustrating part of this. I was feeling a little better for a few days and decided to see...
6601
Josie Evans
josieevans
Jul 3, 2012 6:33 pm
Hi Sarah, Thank you. I want to do an eds section so i would love to learn and understand so the information is current and correct While the research is...
6602
sarah4_ep
Jul 3, 2012 6:35 pm
I think that sounds like a great (but challenging!) idea and I would be happy to support you in any way I can, as I am sure would most people here. It would...
6603
sarah4_ep
Jul 3, 2012 6:40 pm
Sounds great, Josie. We have lots of articles in the Links and Files sections, but plain English is always nice! We are at the point here that we have a...
6604
Lisa Simmons
girlinchair_...
Jul 3, 2012 6:44 pm
I don't believe it works that way. Tenascin-X deficiency is a recessive gene so you would have to have it from both parents. And I know that this information...
6605
Lisa Simmons
girlinchair_...
Jul 3, 2012 6:59 pm
Christina, Everyone was way to afraid to do skin testing on me, since I am so easily pushed into anaphylaxis allergic response, so we only skin tested for Cat...
6606
Josie Evans
josieevans
Jul 3, 2012 6:59 pm
Hi lisa "girlina chair" Dream big hun ;-) i have finally done my mast cell site and i am so pleased with myself. Moonfruit is free website builder which i...
6607
Lisa Simmons
girlinchair_...
Jul 3, 2012 7:08 pm
Sarah, thank you for your support through this- and yes it will be challenging, and yes I would love to wait until they have a name. Any idea on his timeframe...
6608
Josie Evans
josieevans
Jul 3, 2012 7:17 pm
Hi Sarah , My view is that mast cells have many involvements in many conditions . They do affect collgen -I am reading more on this . i am yet to be convinced...
6609
mgc0724
Jul 3, 2012 7:22 pm
Lisa, I hear you, but there is that 'rare' word again. I am not supposed to have HPOTS because it is too rare. I do not have a Mast Cell Disease ... according...
6610
sarah4_ep
Jul 3, 2012 7:28 pm
" POTs may turn out to be a chronic manifestation of mast cell activation" - I would bet that's exactly what my POTS is, but it's interesting that so many with...
6611
sarah4_ep
Jul 3, 2012 7:33 pm
And thank YOU for your message about trying things and having adverse reactions. You made me feel much less stupid, and it helps me to be reminded that I'm not...
