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[twinturbo]

So a negative casein but positive whey makes yogurt and cheese less allergenic for an individual? If so that could at least put DS1 back on cheeses and yogurt if not straight milk. Can anyone point me to a source on this we have an upcoming appt for both kids and I'd like to inquire about this.

[dmw237]

That is what our allergist suggested.....that a negative casein test could result in tolerating cheeses and yogurts.  The soft cheeses such as velveeta, ricotta, and cream cheese I am afraid to try because of the way they are processed I don't know if the whey is "out" of the product enough.  I feel like most of my education on this whole challenge has been based on many hours on the internet. I get so frustrated because there is not a cut and dry answer to anything that I am going through.  It is all based on trial and error which is scary. 

Anything you find from this please share with me.  I will do the same!

[twinturbo]

Definitely! I hate to get my hopes up because I hadn't even heard this while we were at Mt. Sinai itself. But... I just found and bumped an old post in "Main" that had some links to papers you can see them there. I'm going to print them out for the allergist appointment for my milk allergic child tomorrow. This is a kid who has historically tolerated extensively hydrolyzed casein formula and his test numbers reflect a much lower casein to whey. Unfortunately his first milk challenge was to straight milk--disastrous, near immediate anaphylaxis.

But what if we've been overavoiding based on total avoidance rather than protein specific forms that may be tolerated whether heat treated or not. This could make a huge difference in quality of life for us. I could even use sodium casienate again. Or bake with hydrolyzed casein.

I'll repost that link I mentioned. And I'll report any feedback from the allergist we get tomorrow including the papers I bring.

Here's the thread on protein subtypes, immunotherapy, challenges and tolerance. The last one I bumped are the papers I'll review tonight to bring in tomorrow.

SLIT and food challenges/initial threshold?

[twinturbo]

Well that was pointless. I made the effort to read the papers with someone who engineers proteins and whatnot. Interestingly, he thought the research techniques in the papers were quite primitive in the sense it was solid but not terribly informative because the work is on human subjects. The samples are smaller and you can't get very experimental so the methodologies were more 'tried and true'.

The allergist dismissed it all. He said pointless to worry about casein/whey because no product will be free of either. Cheese no matter how well processed of whey will contain whey. Same for yogurt. Dairy products will contain both. He's going for straight dairy testing.

[dmw237]

It is all interesting (not to mention aggravating) the difference in allergists theories.  My son will try the baked in milk challenge next week.  I will let you know how it goes.  Fingers crossed it will go well! 

I too had a hard time wanting to give casein products to my son last year but was hopeful.  It all went well until he tried ice cream.  My allergist suggested in this exact order food trials.  Only to go on to the next if he did well with the one before.  Each trial was a 2 week span.  1.Baked cheese on pizza 2. grilled cheese 3. uncooked cheese 4. yogurt 5. butter 6. ice cream (in which he failed so we did not continue to the last) 7. baked milk.

Over that year's time he has kept 1-5 in his diet on a regular basis.  When he was tested again the other day his rast test numbers went down slightly and so did the scratch test.  Not enough to feel extra confident on baked in milk but enough to give it a try.

[klasnick]

Hi my name is Nicole and I am 38 years old and trying to figure out all my alleriges!  I competed in fitness competitions and while I was zeroed in on my diets I really starting noticing my body reacting to different foods.  I feel like I have an allergy to oils, nuts, milk, egg yolks, casein and I am still learning.  I do have a severe allergy to bees and I do get shots to help desensitize me so I wanted to ask my allergist to test me for foods.  Can anyone give me any insights on how they do the blood testsfor a lot of different foods?  Also dows anyone break out on their face from certain allergies?

[CMdeux]

What kinds of responses to those things led you to conclude that you might be allergic to them?

I'd discuss your symptoms with your allergist.  It's great that you have a relationship with an allergist already-- that will really make things easier.

One thing I'd point out is that NOT ALL adverse responses to foods are "allergic."  That is, you may not have any food allergies--- but it still doesn't mean that you can eat everything with impunity.

By "breaking out" I assume that you mean acne?  Or did you mean something else?

In general that is not related to an IgE response to foods, no.  Generally, IgE-mediated (allergic) responses to foods are quick-- within an hour, nearly all of the time-- consistent (that is, rotation diets don't really 'work'), and allergic responses to foods can be life-threatening.  They may produce immediate/acute symptoms in the mucosal, cardiac, gastrointestinal, neurological, or pulmonary systems of the body.  If you have a beesting allergy-- then you know what I'm talking about.   Same exact constellation of symptoms.

Things like acne, bloating, smelly feet, or a feeling of malaise that lasts for days.... probably not allergy in the technical sense of the word. 

A final word of warning--

'fishing' for food allergies without specific reaction history is NOT currently accepted best practices in allergy treatment.  The reason is that testing often results in false positive results-- as much as half the positives in a random sample are false positives, in other words.  Don't do it-- if you have food allergies, you KNOW... you don't need anything but confirmation of it, usually, or a way to determine which of two or three possibilities it is in the case where it would be dangerous to try the foods in question.   

It's like the difference between asking your doctor to test you for "insect bites and stings" when you get an itchy bump from-- well, something... that you think is an ant, but hey, maybe it was a mosquito or a biting fly...

and testing for "some kind of wasp or bee" when you've landed in the ER after a sting at a picnic.

The former isn't (probably) a reason for a broad fishing expedition testing-wise, and the latter is quite targeted.  The former is also not a reason not to wear insect repellent, though... just because it isn't "allergy" doesn't mean that avoidance isn't a good idea. 


Okay-- PSA over.  LOL.


I'm assuming that since you were controlling your diet fairly rigorously, you have a good record of what you were consuming?  And symptoms that correlate?  That will be VERY helpful in terms of figuring out whether/what to test for.

[Sara Phillips]

Hey everyone! This is my first time on here and I am hoping to get some fellow food allergy suffers point of view/advice/help..whatever I can get! I have recently (within the last year) been diagnosed with the following allergies after seeing an allergist as to why I always feel so crummy: Chocolate, Bananas, Salmon, Beef?!, cabbage, chicken egg WHITE, casien, cows milk, wheat, and yeast ...

Being a 26 y/o active and busy girl, I like to be able to eat what I can...but my body say otherwise. In fact my FAVORITE things are some of the worst I can put in my body which  is a super cheesy thick pizza and craft beer....   

For the last 10 days I have been doing really well at eating only what I am allowed and working out. As I am sick and tired of being sick and tired! And I am getting married in two months!!  I have felt so awesome, it is a wonder why I ever go back to eating and drink the stuff I can't handle.

I would like to know who else may have these same allergies, and/or reactions.

My reactions are; throwing up, pain, SWELLING and I mean all over like someone has plugged me into an air pump!,  tired, sad, depressed, cranky, foggy mentality, trouble remembering things, either quick BMs or none at all, irritability, nausea, gas, rumbling tummy, heart racing...this seems to be it. Pretty much it is hell!!

Anyway, thank you for reading this and I look forward to hearing back from ya'll!

Oh, and when I got my list of allergens, they told me to DO NOT have celiac....

[Jen Stohr]

Hi!  I am totally new here.  I found you through twitter.  I currently manage I believe 25 different food allergies in my family (that changes often as my daughter keeps adding them), asthma, celiac disease, reactive airway disease, and too many medication, chemical, and environmental allergies to count.   
Here's our breakdown:
~J (me): horrid asthma, ANA to dairy (including airborne) and chamomile; SERIOUSLY gluten reactive (likely celiac but never been tested), allergic to sulfa drugs, walnuts, soy, latex, adhesives, wool, lanolin, down,  maple pollen, ragweed, all molds, cats; OAS to bananas, kiwi, all melons; very chemically sensitive.  I take Claritin D, Flonase, Advair HFA 120/30 daily; albuterol via inhaler and neb as needed (especially before workouts); and twice daily Pataday eye drops during spring and fall pollen season.

T - (1/03): asthma; intolerant to dairy & soy; allergic to sulfites and walnuts, malignant hyperthermia susceptible ; outgrown severe allergy to mosquito and spider bites.  Takes daily Zyrtec to manage enviros.

H -  (6/05): ANA to bees and chamomile;  celiac, seriously allergic too dairy, ANA to chamomile; ok w/dyes as long as he's dairy & gluten free; severely contact allergic to latex and adhesives, enviros; malignant hyperthermia susceptible.  Takes daily Zyrtec year round to manage enviros.

M -  (3/07): reactive airway disease; celiac; ANA to dairy, shellfish, mollusks, wheat, sunflower, safflower, palm, coconut, almond, chamomile (all contact/ingestion/airborne); allergic to soy, peanut, corn, honey, oat, mustard, chocolate, olive, bananas , rosemary,  lanolin, wool, lidocaine, latex (contact and airborne), adhesives, grass, mold, dust mites, ragweed,  dandelions, grain dust,  Midwest trees; malignant hyperthermia susceptible; outgrew strawberry, cats, dogs, cottonwood. Takes Periactin twice daily for enviros, and albuterol as needed; looking for something safe for her to replace the Singulair that she is now reacting to.

Newlywed wife of  S - on Claritin for enviros, has eliminated all knee pain, joint pain, & chronic headaches by going gluten and dairy free for us, and has confirmed his own dairy sensitivity!

I am looking forward to connecting with others who deal with this crazy life, as well as helping with recipes/substitutions/cooking..    I have been on this journey since M was born, though I've dealt w/my own undiagnosed issues since birth (my darling mother never believed that anything was amiss with me, in spite of repeated ER and doc visits, chronic ear infections, chronic sinus infections, rashes, and digestive issues til I started giving up foods to nurse Mandie.

[kim helseth]

Hi Everyone this is my first time at this site.

Travelling with a person with an allergy to a  country outside of Canada or the US is difficult. I find the worst part is the flight...as you never know what is being served. We were told (and filled out a special form) that no nuts were served on board..but on the flight back they served a Satay! Of course we provided our son with his own food on the plane.

Our son, 19, has a peanut allergy, last year we went to Amsterdam and had a fabulous experience. Firstly, almost everyone speaks English fluently in the Netherlands. We rented a (permanently moored) boat on the Amstel River, which had a kitchen. We were also in a more non-touristy part and all of the restaurants were great. Only in the core of Amsterdam (near Dam Square) did we find an issue when we asked a restaurant if they served peanuts (I even said it in Dutch) they said no but the menu had many items with nuts!

I'm now searching for a warm spot to go, I have been told to avoid spanish speaking countries as they don't understand the peanut allergy (that is the may contain factor and cross contamination in the kitchen).

If anyone has any experiences they'd like to share that would be great!

k!m

[rebekahc]

Hello to our new members!  We're glad you've found us.  Feel free to jump in anywhere. 

[susieque47]

Hi - Just came upon your website while I was looking for some information on how to store epi-pens in severe heat.  I have a 15 year old with a severe peanut allergy and am always looking for allergy support. 

[hezzier]

Hi and welcome.

Here are some threads for you to check out...

Re: Insulated Epi Pen case?

How do you carry your epi pens when out and about and it is 100*?

Re: Epi's at the beach

[allergygirl1978]

Hi im glad I'm here I recently found out over easter I have an egg milk wheat and red meat allergy along with very bad ibs IBS I have to eat organic allergy free food it has been really hard my family trys to understand I'm so frustrated glad to have found food allergy support

[CMdeux]

Welcome!

I hope that you find our community helpful, allergygirl.

Please be aware that "organic" foods are by NO MEANS any "safer" than conventional ones when it comes to food allergy.

This is probably one of the most dangerous myths out there.

  If you have a life-threatening food allergy, it is critical to avoid that food, and organic or not makes no difference at all.  This  IS, however, often a red flag when deciding whether or not to trust someone else to prepare food safely for you-- if they believe this, they probably do not have a great grasp on what IgE-mediated, life-threatening food allergy actually means.