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PostPosted: Tue Jul 28, 2009 12:14 pm 
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Joined: Tue Jul 28, 2009 11:24 am
Posts: 2
I think, when I was told I had breast cancer at age 46, I was not as overwhelmed as I have been lately. I have a 17 year old daughter, who coughed/choked on every bottle as an infant, and was finally diagnosed with asthma at age 3. It's been a long road through many doctors and children's hospitals. We thought we figured out she was surely allergic to dairy (on our own...not ONE doctor mentioned it). And she abstained for 2 years. A TOUGH two years. Thinking she might have grown out of it, we reintroduced it and have just never had any type of CLEAR picture of what was causing all her problems. Winters worse, nights worse. But still daily and year round. Swollen lip, cough cough cough. Congestion, drip. She's such a trooper. SO much testing and never a clear picture. Her pulmonologist said she only had 50% of her small airway capacity. Yet she rarely missed school or ANY activity.

Finally, at age 17, my HIGHLY needle-phobic sweetie admitted she needed help when she couldn't get into the top school choir, and had a RAST test. Her vocal chords were drowning in gunk.

We knew she didn't really have the "normal/outdoor" allergies. Everyone kept saying "Oh, itchy eyes, hay fever, sneezing?". And she didn't react to animals, grasses, weeds, trees.

Unfortunately she reacted to nearly every mold...most of them 5 and 6 on the RAST test. Also, nearly every food. Fortunately they are only up to 4s.

We're in the 3rd week of a very severe Candida diet...and no change. I've stripped everything out of her bedroom on a quest for a "clean" / mold free environment. But she'll be going to college next year.

We're about to start reintroducing foods one by one. But I don't know that it will help, as she's NOT gotten better through this diet.

She's just started sublingual immunotherapy for the molds. And they had to issue an Epi Pen which scares me to death!

Fingers crossed that the mold allergy might be crossing over into the foods to which she's reacting. And fingers crossed tighter that it helps.

You know what it's like to see your kids miserable, and not know what to do. There just ARE no substitutes that she's not allergic to. She can eat beef (and HATES it, and is practically a vegetarian), and bananas (dislikes them), and chicken (which is OK...but not if you can't have ANYTHING except plain chicken...no sauce...no potatoes...no bread no dairy). Of course these are just the foods she HAS been tested on! There are SO many more they can test. Allergic to wheat, yeast, milk, tomatoes, corn, sugar, chocolate...what else? Everything.

I'm sure I'll get a better handle on this soon. But the immunotherapy and the epi pen have me scared. FAR fewer anaphalactic reactions with sublingual than the shots...and NO recorded deathes. But that's faint hope for a fearful Mom.

_________________
Mom of teen daughter FINALLY diagnosed.
Asthma dx age 3
Allergic to nearly EVERY mold and food tested so far.


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PostPosted: Tue Jul 28, 2009 12:46 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
im4fast.
Huge Hugs! You aren't alone in feeling overwhelmed. This forum has been amazing for support, recipes, ideas...all from others going through the same allergy 'maze' so to say. I really try to take one day at a time, not that I haven't had my meltdowns (well documented here :D ). But somehow it feels better to get things (ok very strong emotions) off my chest. When others reply with their own similar experiences and feelings I don't feel quite so crazy and lost.
I hope things turn around for your daughter. Maybe someone on the forum has recipe ideas she might enjoy. Good luck re-introducing foods, all the best.
You aren't alone.

= - )

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Tue Jul 28, 2009 12:55 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6492
Location: Ottawa
Wow, glad you found us. It's amazing that it's taken so long for them to clue in but...if you've lived with symptoms all of your life, you don't know anything different. It's only when it starts tio interfere with what she wants to do that it becomes serious enough for her to speak up about it.

That's the problem with kids, we can't read their minds (although they think we can) How much are they getting? Will they follow the advise? Will they tell us when it gets worse? How can we protect them and yet still let them find their way?

Don't be scared of the EpiPen. Think of it like a fire extinguisher/ fire hydrant. We've all seen them, we probably have them in our homes and yet how often do we actually have to use them? In the event of a reaction, an EpiPen or Twinject can stop the reaction from getting worse. It seems to reverse the reaction (I don't know the details on ow it works and it would probably just overwhelm you right now anyway). I do know from experience thatthe sooner you use the EpiPen, the better. It's like the less of a reaction you have to counter the better.

Do not read too much or too fast. use the search button (top middle of this page) to look up topics. Read a little at a time.

And breathe. Oh and tell your needle phobic 17 year old that my 7 year old says EpiPens hardly hurt. They are way better than a reaction! :)

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Tue Jul 28, 2009 10:22 pm 
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Joined: Fri Jun 05, 2009 4:22 pm
Posts: 79
Location: Houston, TX
Welcome! You aren't alone!

_________________
Daughter, 10 - NKA

Daughter, 3 - peanut, tree nuts, crustacean, dust mites, cottonseed oil, sunflower oil, mangoes, mustard, and very mild outdoor allergies, eczema, asthma

Son, 2 - asthma, mild eczema, peanut, mild soy, mild egg


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PostPosted: Wed Jul 29, 2009 10:25 am 
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Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2948
Location: Toronto
Hi IM4 - and welcome!

Hang in there, sometimes it's a process to figure out the offending foods - but once you do (I can say from personal experience), life goes on very well. And you quickly adapt to which foods are restricted.

I've got one big concern: is your daughter seeing a certified allergist?
Reading your story, I wondered if you've been seeing a naturopath because of the proposed tests for yeast, sugar and chocolate. Allergists don't test for those. (e.g. in chocolate, they'd be looking at peanut or soy as a culprit).

True allergies are to proteins - whether in foods, plants or moulds - so sugar, for instance, is not considered an allergen in medicine.

Should say: I'm not against naturopaths or alt. medicine per se - they can be helpful on certain health issues. But for allergy, and proper testing for IgE (the allergy antibody), I'd be sure to see a trained allergist. They'll get you and your daughter more quickly to the bottom of the true problem or problems.

Also, try to stay patient. At least the RAST shows allergy is a problem, now it's just narrowing down the extent of the problem.

My big health issue was soy - I became allergic to it as an adult. I had no idea before diagnosis that that was even a top allergen. It was a frustrating, scary period. I seemed to react to everything. But once we figured it out and I began label reading, it was like a light went on - and life was good again. Best with it!

_________________
Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Wed Jul 29, 2009 11:47 am 
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Joined: Tue Jul 28, 2009 11:24 am
Posts: 2
Yes, my daughter is seeing an allergist. She's been to SO MANY doctors. They all say something different "Well, she's obviously allergic, but we don't need to know to what, probably can't avoid it anyway"... "What do you want me to do? Order a CT to find out why she always has sinus infections!!!?"..."Nope...no reactions at all to any scratch test" (age 5), etc etc. GPs, pulmonologists, allergists, etc. We found a new allergist who does sublingual immunotherapy due to her needle phobic...ness. He's the one who did the RAST test. And, yes it did have chocolate and sugar on it. An odd combination for the "generic" food group maybe. But it also included "the usuals" that another poster mentioned. And, yes, she's allergic to ALL those. Fortunately mostly 3-4's (out of 6), whereas her molds are nearly all 4-6s. Yes to soy, wheat, peanuts, chocolate, sugar, dairy, egg white and yolk, potato, tomato, corn, etc. And those are just the ones they tested! Who KNOWS what else. We know she has minor reactions with some other "usual suspects" like shellfish, etc. There are no foods left to eat. When adding all her known food allergies to a strict Candida diet (5 out of 6 on her molds reactions)...she's had 4 weeks of rice and chicken. She's skin and bones and no healthier. As for saying we weren't really having to deal with it before now (forget the exact wording)...yes, we have. We've been trying desperately for an answer for 14 years. Her pulmonologist said "she is feeling MISERABLE". But she didn't know any other way of life and never complained. Bent over holding her side trying to breathe, swollen lip and we had no idea why. Coughing every 15 seconds her entire life. No sleep. It's been very traumatic.

_________________
Mom of teen daughter FINALLY diagnosed.
Asthma dx age 3
Allergic to nearly EVERY mold and food tested so far.


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PostPosted: Wed Jul 29, 2009 12:35 pm 
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Joined: Fri Sep 09, 2005 5:15 pm
Posts: 370
Location: Regina, Sask
You "can" be allergic to corn sugar...I KNOW I am...

im4fast...I'm so sorry to hear how badly your daughter is feeling. I see that corn is one of her allergens. Some people with corn allergy will react to almost all foods because corn is used in almost all foods. Please see the corn allergy section in this forum...hopefully it will be of some help to you.


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PostPosted: Wed Jul 29, 2009 5:05 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
I'm sorry to hear about your daughter's ill health. One question: are you suspecting that foods are the cause of her breathing difficulties? It may be foods, or it may be environmental allergies. It is pretty hard to avoid mould if you are severely allergic. The lip swelling does sound like a food allergy to me, though.

I guess what I'm asking is whether is it possible that she isn't feeling better because some of her problems are due to environmental allergies? Has the lip swelling disappeared on the new diet?

I have multiple, multiple allergies myself. I found the allergy tests useful as a guide to help me figure out some things, but in complicated cases where it isn't crystal clear, I believe that the best way is to figure things out on your own. My allergist supervised an elimination diet, but he is *really* busy and there is no way that I would expect him to have the kind of time it takes to sit down and figure out my diet. Fortunately, my mom went out and bought an excellent book which helped a lot on the elimination diet (the instructions were a lot more thorough.)

I'd highly recommend this book by dr. joneja:
http://www.amazon.com/Dealing-Food-Alle ... 241&sr=1-1

BTW, allergy tests aren't that reliable. There are false positives and false negatives. Some things are certain---i.e. if the RAST test is very high, there is little chance of a false positive. Huge welts on the SPT also = an allergy. So I take allergy tests as a guide. But the true test is through experimenting with one's diet (although this is not recommended in the case of severe allergies.) It is a long, frustrating process for sure.


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PostPosted: Wed Jul 29, 2009 10:42 pm 
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Joined: Sun May 25, 2008 4:27 pm
Posts: 300
Location: Montreal
Hugs from me too!!
I just wanted to agree with Helen. I have tested positive for things via scratch and/or RAST tests and I can eat them. They are definitely a guide and don't just start telling your daughter to eat whatever she wants but the results don't necessarily mean that all of those foods are an issue. A friend of mine actually is going through something similar, so did someone else I knew and I sort of went through something similar although not exactly as bad.
To be honest, I think that maybe it is the mould and/or environmental factors. It better explains her constant suffering. It just doesn't make sense that our body can reject sooo many foods, it just seems against our instinct to survive...kinda sounds stupid maybe but that's what I think.
Anyways, I'm really sorry you're going through this. I know it's excrutiating to watch her go through this...I saw the pain in my parents eyes too, even though they tried to hide it.
You WILL get through it though, that I promise you. You just need to find the right doctor who will LISTEN and give you and your daughter the time of day so that you can explain everything she has gone through and he/she can start brainstorming as to what the problem can be.
Chin up, my friend! You can do it...just think, after all you've already gone through, you're still going strong!!


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PostPosted: Fri Aug 21, 2009 9:33 pm 
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Joined: Sun Aug 16, 2009 1:28 am
Posts: 2
Location: Queensland, Australia
Oh my goodness - you could be talking about me!!! My poor mother went through all the terrible testing with me as a baby, and was ridiculed for her trouble!! I've been a severe asthmatic all my life and whenever she'd take me to the hospital the nurses would say "there's that strange hari-chrishner woman who doesn't feed her baby properly"... but it wasn't a choice, it was because I was allergic to everything, although nothing was ever officially diagnosed back then!!

As for the reaction to lactose - I am exactly the same, and yes it affected my singing and acting career too!!!!

I've just posted on this forum my history of late, but I did forget to mention I had a HUGE reaction to moulds (and dust mites - no surprise really!). The mould reaction in the skin prick test hung around for a week and was VERY painful!!

Does your daughter get an itchy throat when she comes home, or visits somewhere new? That's my biggest problem at the moment - the itchy throat, it drives me crazy!!

I hear you about not being able to eat properly - Mum had 4yrs of chicken, rice and pears - but she came out of it terrifically, although it was VERY tough for awhile. Now that I'm on it too (but can't have rice or chicken!) I'm wondering if I will make it... but then I see how healthy Mum is and how she is living a perfectly normal life - and I think, if she can then I can too... hopefully, maybe.

Good luck, and please tell your daughter she's not alone!

Katie

_________________
"Teaching is not filling a bucket, but lighting a fire!"


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PostPosted: Mon Aug 24, 2009 1:59 pm 
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Joined: Mon Oct 29, 2007 11:56 am
Posts: 120
Location: UK
i know its of no real comfort, but have met a adult with more alleriges than than your first list. ............its possible to still have a good life , even with multiple allergies.

i would stick , personaly to one good immunoloigst, have the common desentisation for environmental alleriges which will help over time to control the symptoms.

i wouldnt expect after years of damage to improve, instantly, nasal passages are damaged permenantly. so keep up the nasel sprays and asthma treatments of course.
so dont expect things to improve for a while , body still needs to recover.


get your child cooking together with you, look on this as a culinary challenge.
try and find a way for her to eat beef in a way she can tolerate it, iron is required and take advantage of the fruit and veg she can eat.


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PostPosted: Mon Aug 24, 2009 2:33 pm 
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Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2948
Location: Toronto
Im4fast - how are things going?

Hope your daughter is discovering a few more foods to eat. Gwen

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Allergic to soy, peanut, shellfish, penicillin


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