Introduce Yourself - We're Glad You Found Us!

Started by admin rebekahc, July 21, 2011, 10:35:46 PM

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Macabre

Welcome!  Glad you found us. 

The center of knowldge for the Alpha Gal  is at the University of Virginia.  Dr. Thomas Platts-Mills and Dr. Scott Commins have become the world experts on this.  If you are in the area at all, I know Dr. Commins sees patients--he saw my son for a food allergy. 

I know of two people in my church who have this.  I believe they both go to that UVA practice. One of these folks thinks he may be "outgrowing" it. Let's hope.

Here are some links:
http://www.aaaai.org/global/latest-research-summaries/Current-JACI-Research/Tick-bites--A-common-cause-of-IgE-antibodies-to-al.aspx

http://uvamagazine.org/research_and_discovery/article/ticked_off_carnivores#.UQv0QaV9KSo


This is a really helpful link. See the right side bar?  You can hear an interview with Platts-Mills on public radio  and for an extensive program on Alpha-gal IgE issues on an episode of The People's Pharmacy, also a public radio program. I remember hearing both when they initially aired.

http://allergytomeat.wordpress.com/alpha-gal-research-links/


I hope you find this a supportive and helpful community!
DS: 🥜, 🍤

CMdeux

Quote
I thought maybe this is what I need, to be able to talk to people who understand what it feels like.

It's one of the single most helpful things in adjusting well to life with life-threatening food allergies.   :yes:

I'm so glad that you found us!

  Alpha-Gal allergy (tick-meat allergy syndrome) is one of the least understood of the emerging atopic conditions, IMO.    It seems to be where the eosinophilic disorders were five to ten years ago.  I hope that you have good support from a physician.   :grouphug:
Resistance isn't futile.  It's voltage divided by current. 


Western U.S.

becca

Welcome!  I have not heard of this allergy!  Just read about it after seeing you speak of it here. 

I wonder if the study of a completely new(ish) allergy like this might shed light on the rise of allergies in general? 
dd with peanut, tree nut and raw egg allergy

rebekahc

TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

allergymom2t

I just found your website, I can't be more excited about finding others who share some of the the same feelings!  We live in the Rockwall/NE Texas area and can't find a support group in our area except over in Dallas.  We have a 6 y/o Kindergarten daughter with a life threatening peanut allergy and a severe tree nut allergies and have found it very difficult to find friends who understand the impact and severity of her allergy.  I am about to go nuts!  :insane: (No pun intended..hehe)  I feel it's my mission to start a new group in our area if the need is there.  Thanks for a great place for a place to vent and find resources!   :thumbsup:

GingerPye

Welcome!!  You are very welcome to vent here, and to ask questions, and to look for/ask about resources!!!  We all have been where you are.  How long has your daughter had the diagnosis?
DD, 25 - MA/EA/PA/env./eczema/asthma
DS, 22 - MA/EA/PA/env.
DH - adult-onset asthma
me - env. allergies, exhaustion, & mental collapse ...

Macabre

Welcome! 

There used to be a wonderful Dallas group when I lived there (moved in 2004).  We met at Presby in Richardson (of course driving on LBJ through Mesquite is not the most fun I've ever had, lol). The mom who was the center of it has a child in high school now, so she may have started doing other things.

We do have a few members here in the North Texas area. 

I hope you find this a supportive place!
DS: 🥜, 🍤

allergymom2t

Thanks for information!  We have had our diagnosis since 2008 (DD was 2).  At the time of our diagnosis, we didn't realize the severity of her allergy.  The only information we received was, "take out all the peanut products out of the house" and then given 4 websites to look at on our own.  That was it!  I am amazed how many people are not given more information or references to support groups at the time diagnosis.  Education and support groups are the key to safety and not feeling alone.  I so glad I found this site!   :happydance:

griffon89

Hi everyone,

I am newly diagnosed with allergies to all dairy, eggs, wheat, rye, gluten, almonds, peanuts, pineapple, gen beans, kidney beans and squash as well as brewers yeast. I am finding it very overwhelming trying to figure out whats left I can eat and how to modify my recipes to fit all of these restrictions. I also have some severe allergies to various medications like pennicilin, eurythromycin, codeine, gravol and am latex sensitive.

I have had digestive issues and some allergies all of my life. A failed back surgery 4 years ago and the accompanying medications seem to have thrown eveything into overdrive. I have gained 80lbs in 2.5 years and not from eating too much. I also suffer from adrenal fatigue from ongoing stress for a bunch of reasons. The multitude of regular Dr's I saw said there is nothing wrong with me, I just eat too much and tried to give me more medications for all of the side effects of the other pills they had me on which made me gain more weight. I was also trapped into following the dr's orders even though they were making me sicker as my job was dependent on following Dr's orders after my back injury. I felt trapped and was getting sicker and sicker as well as more and more overweight.

I finally found a Dr who was willing to recommend going off all of the ridiculous meds and am off of everything since last Nov. Then after I was clear of the pills, went to a Naturopath in Jan. Despite already costing me almost $2k out of my pocket(not covered by medical) I am finally getting answers. I am low in iron and vitamin D and taking those has help bring back my old energy. The naturopath also explained that all of my allergies are causing my body to react by retaining water, sometimes I would gain 10lbs in just a few days from something I ate or took a new prescription. He said that once I eliminate all of the allergens, the water/weight should start falling off. 

So I am looking forward getting rid of all of the bad stuff and feeling better. I have always been very active except for the past year or so and am looking forward to getting back to that as well.  I hope that I can find lots of ideas here in this forum and look forward to finding out how others cope with similar issues.

SilverLining

first, sorry to hear all you have been going through.

Second, did you see an allergist?  A naturopath is not qualified to diagnose allergies.  You may have some real allergies, and you may have some sensitivities, but avoiding all those foods if they are not reall allergies is not only very difficult but it's also not very healthy.

CMdeux

.... though it will SURE help you drop a lot of weight in a hurry to go on that kind of restricted diet.

While that might seem great at first, Silver has a good point that it may be pretty hard on your body otherwise.

It is really great to pay more attention to your diet and to have more energy as a result of correcting your deficiencies in iron and vitamin D, though!  Feeling better is always a good thing; we definitely have a lot of different allergy-friendly cooking tips and recipes here.   :)


  Have you ever been evaluated for Celiac disease, by the way?  That can result in some very distinctive mineral and vitamin deficiencies.  The reason why it is important to actually get a diagnosis rather than just "going gluten-free" on your own is that there are other regular screenings that should be on your radar if you've got it... and the only really good way to diagnose celiac is if you are EATING gluten at the time... so if you've been avoiding wheat, you can't get an accurate diagnosis.  (Bummer, that.)

I'm also (because I'm a mom) going to wag my finger at you and remind you that if you have severe allergies (to medications) then you need to be seeing an M.D. who can prescribe you epinephrine.   If you have a latex allergy, you need to be wearing a MedicAlert bracelet.  (Okay, lecture over...  ;)  )

Resistance isn't futile.  It's voltage divided by current. 


Western U.S.

PurpleCat


Twedra69

 :happydance:  Glad I found this site. I am Twedra69 and my ds has all the allergies. He is allergic to Peanuts, tree nuts, feathers,dust, cats, molds,trees,grass, Soy ,garlic, and alfalfa. 

CMdeux

A warm welcome to you, Twedra!

I hope that you will find this to be a welcoming place to ask questions and share experiences.   :heart:
Resistance isn't futile.  It's voltage divided by current. 


Western U.S.

rebekahc

TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

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