Introduce Yourself - We're Glad You Found Us!

[SilverLining]

Hi Jennifer, welcome to the forum.  Sorry to hear about the challenge.

I also have an allergy to sesame seeds.

[rebekahc]

  Welcome! 

[Beth Turner]

Hi! I'm Beth. I have a 13yo dd with a LTFA to peanuts, and I have one to cucumber. (Unusual one, I know!) I actually just found this forum because I was googling to see if anything would come up about a report we made to the Office for Civil Rights a few years ago regarding my daughter and a charter school, and someone had posted something about it on your old site. That's a very long story so I'll save it for another topic!

Anyway, glad to be here. My dd is in 8th grade at Kunsberg (National Jewish Hospital's school) but we're looking for a high school for next year. Being at Kunsberg has allowed her to feel like a normal kid; it's going to be hard to go back to carrying her meds all the time, being conscious of not using the water fountains, washing hands often, etc and so on.

[creativebeth]

Oops. Apparently I wasn't logged in.

[CMdeux]

Welcome, Beth-- it's great to have you here with us!   

[rlschell]

Hello everyone! As a new forum member, I'd like to share a bit about myself and see if other members can suggest ways to best address my concerns.

I feel like an oddball even among others with food allergies because I don't have "typical" reactions. I have multiple food allergies that cause delayed reactions. Although I used IgG test results as a guideline, I confirmed everything by food challenges. My reactions usually show up within several to 12 hours after eating and may even take a couple of days to hit me. I get severe digestive upset, body aches, fatigue, headaches, canker sores, feverish feeling, sinus/ear problems and arthritis flare-ups. Basically, my whole body responds with systemic inflammation.

I've had this problem since I was about 20 (after several years on constant antibiotics) and I'm now 45. My life was often a fog of nausea, fatigue and achiness. I wasn't diagnosed with food allergies until 2003 and then only to dairy. I gave up dairy and was somewhat better for a few years until I went downhill in 2010. The dairy allergy was just the tip of the iceberg and I didn't realize how sick I had become until I stopped eating many other foods. Now (since late 2011) I'm down to eating only non-reactive foods and feel much, much better. But I lead a very food-excluded life where I have to drag my "safe" food with me everywhere and avoid vacations and social events that center on foods.

To complicate matters slightly, I also have IBS. But I usually know what triggers that and can avoid or resolve problems quickly.

Aside from dealing with the alienation from our food-obsessed society, my other questions relate to if/when I will get better. My doctor thinks that if I give up the allergens for a few months, my guts will heal and I can occasionally eat stuff that I can't now. My fear is that I go back to being able to eat more and then gradually, or suddenly, slip back into serious illness that takes weeks to pull out of. The alternative is that I play it safe and live the rest of my life with a very limited diet. Please, tell me how this works for people in my situation? What is the chance that I will "recover" from adult-onset allergies that have become worse as I age?

[SilverLining]

My sister outgrew adult on-set allergies, I didn't.

~~~

I am NOT a doctor, so take this as the opinion of a total stranger on the internet.   

Maybe some of those reactions are intolerances as opposed to allergies.  If so, I would think the doctor may be right....after giving your body time to recuperate, you may be able to tolerate some of them in limited amounts or on a rotating basis.

Allergies can cause non-traditional reactions, but sometimes it's not actually allergies.  kwim?

[rebekahc]

Yes, I agree with Silver Lining.  If you're having symptoms of food intolerance very often it is possible to give your body a chance to rest and then gradually reintroduce your triggers.  However, and I can't stress this enough - if you have true allergies, you should NOT attempt to reintroduce foods without your doctor's advice and monitoring in the office while you do so.

Often those with food intolerances are able to use a rotation diet to keep symptoms at bay.  Generally, a rotation diet follows an every third day pattern.  So, if you are intolerant to chicken and tuna, you might have chicken on Monday and then again on Thursday.  You wouldn't want to have tuna on the same day as chicken so you could have it on Tuesday and Friday, etc.  Many times, this rotation diet and finding a toleration threshold allows those with food intolerances to reintroduce foods with little to no symptoms.

IgG testing is notoriously unreliable.  I would suggest finding a doctor familiar with ALCAT testing and their rotation diet.  I know several people who have had really good results isolating which substances are actually problematic for them and  using the rotation diet they provide to alleviate symptoms.

The ALCAT Test is NOT an "allergy" or IgE test. The ALCAT is the most effective and comprehensive sensitivity/intolerance test available. The ALCAT differs from other food allergy or intolerance tests as it accurately and objectively measures leukocyte cellular reactivity in whole blood, which is a final common pathway of all mechanisms. The test utilizes electronic, state of the art, hematological instrumentation. Standard allergy tests, such as skin testing or RAST are not accurate for delayed type reactions to foods and chemicals. They measure only a single mechanism, such as the effect of mast cell release of histamine or the presence of allergen specific IgE molecules. Delayed reactions to foods and chemicals are NOT IgE mediated.

The ALCAT Test also differs from standard IgG tests in that they rely exclusively on one immune pathway, serum levels of immunoglobulin G (IgG). In fact, high food specific IgG titers are indicative only of exposure, not necessarily intolerance.

The ALCAT Test reproducibly measures the final common pathway of all pathogenic mechanism; whether immune, non-immune, or toxic. It is the only test shown to correlate with clinical symptoms by double blind oral challenges, the gold standard.

I don't normally put much (well, really any) faith into tests that claim to diagnose and/or treat all kinds of conditions.  However, several years ago my DD nearly died from an anaphylactic reaction to a food.  We never did figure out what caused the reaction.  Our allergist finally asked us to run the ALCAT test on her.  Not because our allergist believed a food intolerance triggered my DD's reaction, but because she hoped that we could prevent DD from having a near-death reaction if she ever encountered the allergen again.  Since we had no way to know which food to avoid, she felt that if we could reduce other types of irritation to her system that perhaps DD would not react as severely to her actual allergen.

Our experience with the ALCAT test and results was that it really did highlight some foods that caused DD intolerance-type reactions.

[cho1973]

Greetings to all.

I just found this board!

I'm Steve, a 38 year old male living in Central Virginia. In May of 2009 I awoke late at night with terrible stomach pain, numbness in my extremities, rapid heart rate followed by a plummeting pulse, difficulty breathing, and eventual near LOC. Some seven months and tend of thousands of dollars in medical tests later I discovered I was the latest member of the "allergic to mean thanks to a tick bite club". Fortunately I am in contact with one of the key researchers working on this allergy at the University of Virginia on a regular basis. I travel extensively for work which makes thinks tough but I've only had one reaction in the last year, thank God.

Anyway hoping for a useful exchange of information.

Moderator(s): Is there any possibility of a subtopic specific to the alpha-gal meat allergy?

[AdminCM]

Welcome!     I'm sorry for your unexpected and terrifying entre into anaphylaxis, but VERY glad that you found us here.  It's terrific that you have a good physician to help you.  That makes such a difference in one's quality of life and ability to manage well.

In answer to your question-- 

Probably, though you should know that you're one of the first people we've had on the boards with it, so it may not (yet) be very useful to have a section of your very own.  If you look down in the allergen-specific portion of the board, you can see that some topics are much more active than others, and the reason is generally to do with the number of members who are dealing with a particular allergen. 

Subjects like EE and non-food allergies do come up from time to time, and we very definitely discuss those things like asthma and eczema, seasonal allergies, etc.  But those are things that most of us have in common since we're a pretty atopic bunch. 

  There is an "other" category down at the bottom of the individual topic boards for allergen/allergy-specific threads.  My advice to you would be to ask whatever comes to mind up in the regular portions of the board (I know that we have one other member, perhaps even two, who have immediate family members who have developed tick-mammal alpha-Gal sensitivity, so it has been discussed before), and let moderators worry about whether or not it goes elsewhere.  In other words-- don't stand on formality-- ASK away.  If we don't know, we can at least offer some addtional perspectives and maybe help YOU to an insight or lead to a question for your doc.

  We generally leave threads in the general portion of the boards if they are likely to be of use to people with other allergies-- for example, posts about methods of cross-contamination in restaurants, tips on travel and food carriers, when to use Epi, dealing with unhelpful or hostile friends, family, or coworkers; that kind of thing.

For specific research articles, etc. you may want to start your own "clearinghouse" thread down in the "other" allergy category-- that way that stuff is easily accessible in one location over time, and we can all add to it when we find things that relate directly to alpha-Gal allergy.  That way, the thread(s) can easily be moved over to a new subtopic if it looks like there are a few members who would find it useful.

Does that help??   

[cho1973]

Makes sense to me. I did a cursory search on the board and realized there wasn't much, if anything, being discussed about this particular allergy.

[CMdeux]

Not yet, anyway.  But then again, eight years ago, there was only one or two sesame-allergic folks on the boards, too, and now there are a lot more of them.

If you give us a chance, trust me, if it's allergy-related, we're avidly curious and enthusiastic about it!  We're mostly very eager to learn and help, and my husband (and other spouses) sometimes refer to this place as the 'fount of all knowledge' for pretty much anything, allergy-related or not.  LOL.

Be sure to search "tick mammal allergy" on the archive site-- I'm not sure where that older thread is, and I can't quite recall who it was that posted initially about it, but there WAS a pretty substantial thread on the subject less than two years back.

I'll see what I can dig up for you.  That thread had some recent research articles and such in it, too, as I recall.

Here it is: tick related meat allergy!

[portia101]

I started reading the board, in one of its previous incarnations, in 1999.  I was looking for information on peanut allergy because a friend and colleague of mine passed away after an anaphylactic reaction some years previously and I wanted to know more about it.  I also have a DH who has had anaphylactic reactions to bee stings, requiring one emergency trip to the hospital. (He insists now that he has "outgrown" the allergy and no longer needs an epipen.) 

I was a member of the previous boards.  I was BigGreen on the last one but had  problems moving my screen  name over here. I'd have to call myself a lurker.    I never posted more than a handful of times on the other boards, mainly because I don't have any substantive information to contribute, but I have learned so much here and my DH and I have both modified our behavior as a result of the things I have learned here.  I am happy to be a member. 

[CMdeux]

Oh, I am so glad that you made it over with us.  I remember you very well from the, um... OLD old place, if that makes sense.   

If you didn't have a lot of posts, we probably didn't automatically register your username here during the move-- so you can always change your screen name to the familiar... or we can get to know the new you, if you like.

 

[portia101]

I'll probably just stay portia.  It's easier. 

Thanks for the welcome