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Monday, May 10, 2010

Monday Moxie: Food Allergy Awareness Week & The Journey of 9 To Their Diagnosis


Monday Moxie: Food Allergy Awareness Week
& The Journey of 9 To Their Diagnosis
by Alice Shaffer

( Please be sure to read the second comment in the comment section as Shannon shares her journey with her son's Celiac's disease)

Food Allergies are becoming more commonly diagnosed everyday. The week of May 9-15, 2010 is Food Allergy Awareness Week (FAAW). This week was created in 1997 to educate the public about the severity of food allergies as well as potentially life threatening.

Many states have officially recognized Food Allergy Awareness Week. If your state has not formally recognized FAAW, then you can speak with your state governor to get this changed.

The Food Allergy & Anaphylaxis Network has developed some wonderful brochures, fliers and posters for FAAW week. There are also many activities, presentations, and PAL Hero awards that you can use with your children and their friends to teach them about food allergies.

PAL Hero Awards are used to help encourage children to be safe with their friends who have food allergies. You can read more about this on the FAAN Kids site.

Regarding Nannies will be bringing you a week of Food Allergy Awareness and today I share with you several people's account of how they have been diagnosed with an allergy from the time they suspected something was wrong. Some suffer from diary, milk & soy allergies, preservative allergies, Celiac's disease to a Red Dye Allergy. All their stories started with them realizing that something was wrong with their body. They all had to do their own research to help further their diagnoses of their food allergies. They have all been able to maintain a balance with their allergies in their daily life.

Preservative Allergy & Angioedema

This story of Christi T's allergy is of her battle to figure out why she went into anaphylaxis shock.

Well, for me, it's a preservative. For me, I suspected it after having asthma type reactions every time I ate certain foods. I had to read a lot of food labels and finally was able to put two and two together. I later got allergy tested (years later) and had my allergies for cats, dust, mold and cockroaches confirmed, tho they can't confirm allergies or reactions to what they call 'irritants' like smoke or chemicals. For the preservative I'm allergic to, the only option to get a definitive diagnosis would be to allow the doctors in a hospital setting to administer the offending agent to me in increasing does and wait for a reaction since I have anaphylaxis to it (it's sulfiting agents that I'm allergic to). I don't swell up like people do when they get stung by a bee, but I start having a severe asthma attack and it gets harder and harder to breathe and my chest/lungs just ache. I get nauseated, my face gets red, heart beats faster, I get an instant very bad headache - all signs of anaphylaxis.

I keep it under control by avoiding the offending agent and knowing what it is typically in, tho every now and again I'm surprised by a reaction. When I first discovered this reaction I was in my early 20s and it took a good couple months to pin down the reaction to the cause. I do also carry two epi-pens for emergencies tho thankfully I've been fortunate to avoid having to use them, tho I've come close at least twice.

I also have another allergic reaction that is related to anaphylaxis where I do swell up (angioedema) that has been triggered by stress (physical or extreme emotional stress) and other unknown factors. it is believed tho, that it may also be triggered by a lot of dust/mold exposure (hey, at least I don't have to dust my house myself, that's my husband's job now). 6 years ago I suddenly had my lip swell up. My mouth went numb and stayed that way for weeks. After three weeks of repeated bouts of swelling in my face, my dr sent me to an allergist for the first time ever and he's the one who dx'd me with asthma (that I've had since a kid but didn't even know it!) and confirmed my reaction to sulfites as anaphylaxis. He put me on Zyrtec and Zantac (which is also an antihistamine) and allergy eye drops as well as allergy nose spray. He also gave me an inhaler and the epi-pens to carry at all times.

It took several months to get over that bout of angioedema, and since it's caused by environmental triggers that I can't typically avoid and of course the physical stresses like getting sick. If I have a flare-up I take benedryl on top of my regular allergy medicines and wait til it stops.

This past December I was allergy tested again and from there made the decision to start allergy shots. I have been doing twice a week to get shots since January and will soon be going only once a week. After another 4 1/2 years I hope to be free from a lot of the reactions that I have to some of my allergies.

My biggest piece of advice is to keep a food diary and note whenever you have an unpleasant reaction that is making you suspect allergies. And visit an allergist/immunologist. They are far more equipped to handle allergy issues than just a general practitioner. Allergy testing gave me answers that I didn't have before, and helped complete the puzzle of my troublesome symptoms. And don't be afraid of the commitment to allergy shots if it's recommended. It does take time, but it's far better to go for five years getting allergy shots and stop taking meds eventually (or a lot less of them with less severe reactions) than to go a lifetime taking meds daily just to see if you can possibly avoid suffering from the allergies.

Antibiotic Allergy

Christi's daughter Savannah had suffered from hives after receiving a Rocephin shot.

For Savannah, she's got an allergy to antibiotics-Cephalosporins. After she had an antibiotic shot of Rocephin, she broke out in hives all over her whole body. She was on benedryl for a week after that and the hives finally went away all the way and she now has to avoid any type of antibiotics in that class of meds. There's no cure for it that is known at this time, she simply can't have them.

Soy & Milk Allergy
The next story is from Kathy mom to Ryan who was having major breathing problems:

Ryan was having major breathing issues at night around the age of 1. It wasn’t to the point that we were afraid he’d stop breathing or anything. He was just very congested all the time and had to sleep upright. Small children are NOT good at keeping their heads on their pillows.
The side effects to Ryan's allergies was that the allergen accumulated in his body and his body responded respiratorially. He was always congested, wheezy and had troubles getting to and staying asleep. In addition, he has psoriasis and it would periodically flare up more than usual. We searched for a diagnosis and his pediatrician recommended that we take him to an allergist. At that age, he had to endure the back rack of pain. They had a wooden contraption with several needles in it. They pushed it into his back and we waited to see his reactions. They had to do that because little ones will not let you repeatedly poke them with a needle and wait patiently for results. It was torturous, but worth having answers.
Ryan's allergies are under control now. He is now able to eat as much milk and soy as he wants. Although, I do find myself limiting how much he gets. We were very strict with prohibiting either ingredient for a little over 2 years. Each year we had a retest of his sensitivities. Eventually, the doctor gave the go ahead to slowly incorporate both back into his diet.
It was about six months from when we noticed his symptoms to pinpointing an actual cause.
To control Ryan's allergy we use to severely restrict what he could eat. It was difficult, especially when we were not in our own home.

Milk, Eggs & Corn This is from Kathy mom to Sofi who suffered from eczema, skin rashes and horrible diaper rash.

Sofi developed eczema, right around 1 year old. The dermatologist said it was just eczema. I suspected a food allergy because at 1 year Sofi was given eggs and milk. I eliminated egg and milk from her diet. I reintroduced egg once the eczema went away. She was fine. When I reintroduced milk, the eczema came back. I switched her to soy milk, but found that gave her eczema too. She got horrible diaper rashes sometimes. I figured out it was corn after she broke out after eating corn on the cob for the 3rd time.
For the diagnosis of the milk, egg and corn allergy was a time frame from six months to a year to identify all three of Sofi's allergies.

However, when she was 3, we did 2 allergy tests. A blood test at the pediatrician, and a skin prick test at the allergist. They all came up negative! The allergist said to slowly reintroduce the foods again. I gave her a little bit of milk for 3 days, and she broke out again. Real life reactions trump lack of test reactions. Sometimes eczema is just eczema. But sometimes it's not. With Sofi, it is an allergy, I firmly believe that, no matter what the doctors tell me. Sofi's different than most kids though. Because she actually tested negative to 2 tests. But reacts in real life. It is now under control, as long as I'm careful about reading ingredients on EVERYTHING.

Celiac's Disease

This is Amanda's story of her lifelong battle with GI problems

I have always had GI problems (constipation, gas, bloating, etc). Since I was young. The major side effects were bloating, weight gain and I was exhausted all the time. Because when you have allergies it stresses your adrenal glands. I was diagnosed through an elimination diet. I removed all highly allergenic food for 3 weeks and then added one food at a time to see if it caused symptoms. If it did, It ment I was allergic. I have it under control now for the most part. I try to avoid the food (gluten). However, Gluten and dairy (which I also suspect an allergy too) are in EVERYTHING. So it is not as easy to avoid as say peanuts. It took me 24 years to figure out I had a food allergy. I control my allergy by avoiding the food that I am allergic to. My advice if you suspect a food allergy is to do the elimination diet, because food allergy tests are generally not super accurate where the elimination diet is based on physical reaction.

Red Dye and Annetto Extract

Lyssa's battle with hives, burning skin, itching skin, headaches & sinus allergy issues

It started with itching for a few months. We changed shampoo, laundry detergent, and other house hold items. Then the itching became hives and they got worse and worse and worse. I did all of the prick tests and it came back with lots of allergies, but we knew it was more then that. So they put me on a bland diet for two weeks (chicken, pears and rice). Then we added foods back in slowly and wait for the reactions to start. We discovered I was allergic to red dye and an extract called Annetto Extract. Which is an organic alternative to red dye. That was is in all cheese that isn't white. This process took about a year to diagnosis. I was in my late 20's when I discovered that I had this allergy.

To control my allergies I use dye free Benedryl and stay away from RED DYE in food and household products.

If you have similar symptoms I suggest you keep a log of everything you eat, use on your body or come in contact with and when you have a reaction. looking back at the log can give you a good idea of what is causing the problem.

Another story of Celiacs Disease

Dawn's battle with GI problems

I was told I had Irritable Bowel Syndrome. I found myself running to the loo after every meal. Even something so mild as chicken Teriyaki would make me ill. I googled my symptoms and Celiacs came up. This was confirmed with a blood test. I had been suffering for 2-3 years before being diagnosed at age 39.
Side effects are nausea, diarrhea, also infertility and recurrent miscarriages. Long term side effects include intestinal damage and low iron levels.

I carry Benedryl and Immodium to help in case I consume hidden gluten when dining out. Sadly, its common to receive misdiagnosis, because Celiacs isn't a money maker for the drug companies. I stopped eating gluten and within a few days felt better. Then went to a holistic physician, who has been very helpful.

Tree Nuts -Brazil Nuts, Almonds, Walnuts, Pecans etc

Angie's lifelong battle with the Nuts!

My allergy is to certain kinds of tree nuts-Brazil Nuts in particular, but also more mildly almonds, walnuts, pecans, etc. My allergy has actually gotten slightly better over the years.

We actually had no idea that I was allergic to the tree nuts. It was the Anaphylaxis at age six after eating a Valentine's Day chocolate that had a Brazil Nut in it.

Angie also shares with us her physical and social side effects of her allergy:

Physically? Anaphylaxis is scary, scary, and deadly. Some tree nuts, though, I only have mild reactions to-I can eat a little tiny bit of walnuts and only get hives in my mouth and on my skin. If I handle them, I break out in hives where they've touched.

Social side effects-it was tough as a kid because back then, not many people had heard of deadly allergies to food, let alone nut allergies. I was constantly having to explain. It's a LOT easier these days!
Yeah. I feel very fortunate that I lucked into the tree nut version of this allergy. It's a LOT easier to manage than most other food allergies-even ones that are less severe in reaction. And these days, no one looks at me funny in restaurants if I ask if a certain dish has nuts in it. I haven't had a close call in a long, long time.

My allergic reaction was pretty instantaneous. Since they'd not seen a lot of cases like mine, I spent three days in the hospital while they made sure That was the problem.

My advice for those with my kind of allergy-be proactive. Anaphylaxis is nothing to mess around with, and it's very, very, VERY scary for a small kid to go through. Others need to understand the severity of the small things with nut allergies that can cause huge issues. One more thing I'd have as far as advice goes. Food allergies are particularly hard on kids from a mental perspective. It's tough being different, and tough when you have traumatic hospital stays as a result. I think, if I were talking to a parent of a newly diagnosed child, I'd advise them to make absolutely certain to talk to their child in clear terms, and allow them to ask any questions they might have. And not to pull any punches and be honest with them about the social challenges they may face as a result (I'm speaking here mostly of severe allergies that are tougher than mine to control, like peanut allergies.)

And also, growing up and even as a college student, it was helpful for me to educate a few very close, trusted friends on the symptoms of my reactions and how to treat it when it happens. It saved my bum on a couple of occasions.

Dairy Allergy-Class 6

A Nanny shares her story of S's allergy to dairy Age 5

Side effects that S can suffer from her food allergy are Anaphylactic shock, severe vomiting, closing up of windpipe and hives over entire body and swelling of the lips.

Her allergy was apparent when her mother tried to switch from breastfeeding to formula bottles. This was around 8 months of age. They went to an allergist at some point and was diagnosed. She is class 6 allergy to dairy, previous to last time she was off the charts her numbers where so high, they where trying to get her in a study in NYC and they would not take for the trial because she was too allergic. Last time she was tested she moved down a class and is now in Class 5 which still doesn't mean much improvement since she needs to be class 1 or 2 in order to reintroduce the food back into her diet.

It is under control because we are very careful in what she eats and are very aware of cross contamination. Which means cooking fresh food, getting organic food, kosher Parve food and constantly reading labels, since manufacturors like to change the ingredients in their products. I bake all her cupcakes and muffins so she can also have treats especially for birthday parties and special treats at school. When the teacher asks for food related contributions to school we always give enough for the entire class so everybody can eat the same safe 'S' food. The health food store is our biggest friend and I think it's easier now as there seems to be alot more products out there now that she can have since people seem to have gotten a little more healthy. She had outgrown her egg allergy which added a lot of foods back to her list. Her younger sibling and I have the same food as S. I didn't want to give the little one diary in her cup since it's so easy to drink out of the wrong cup. I have even switched to soymilk as well. 'S' used to get a rash if I kissed her after drinking my coffee (with milk) and I'm not talking about a wet sloppy kiss just a peck on the cheek. She is a very healthy little girl 90% in height and weight on the doctors charts.

It was alot easier to deal with then I thought in the beginning, and I think she is healthier for it, no Mc donalds ever, she calls it the yellow M store since she started reading! We control it by making sure she eats what we give her, and she will now say to others when somebody offers her something "I have a dairy allergy ask my nanny if I can have that" We trade out candy from parties and Halloween. She knows that there is a S version of everything that comes in diary so she is not missing out.

Advice for others is to get tested and research your particular allergy as there is a wealth of information out there. For diary allergies, anything that is labeled Vegan does not have diary and there are some really good cook books out there. I love Vegan with a vengeance. and there is the FAAN network and newsletter which has a lot of info and keeps up to date on new research that is going on.

3 comments:

janstclair May 10, 2010 at 6:21 AM  

Thanks for this helpful article! It was much easier to read and absorb the information from these accounts than from dry facts and symptoms. It seems that so many more kids have allergies these days, too.

I was particularly interested to hear that sometimes the scratch test doesn't confirm the allergy, and that sometimes the elimination diet is the only way to know the real issue.

Thanks for all this important information, and in such an accessible form!

Development Team of Regarding Nannies May 10, 2010 at 10:09 AM  

Celiac's

This is a story from Shannon mother of 2 with her battle with her kids' celiacs

I started suspecting my oldest son had food allergies when he was about a year old. He had chronic diarrhea, that was extremely foul smelling and tore up his bum (he constantly had open sores), he was constantly hungry, and yet he looked malnourished (he had a pop-belly and yet you could see every rib). The doctors kept telling me had was constantly getting stomach bugs, but that just didn't sit right with me. We had an allergy skin test done him, which came up negative on everything. Then we got a referral to a gastroenterologist. While he was great to work with, he was unable to provide us with any answers. I kept food journals which didn't seem to give any answers. By the time he was three, he was still not talking, showed signs of autism, screamed every time he used the bathroom (potty training was virtually out of the question - he just did not have any control), and was under weight - yet ate all the time. I tried taking him off of various food groups (we tried no red meat, no milk, no nuts, etc). He had two colonoscopies and endoscopies before he was three! Finally, we went guten-free. All of a sudden, he had normal bowel movements. The sores on his bum healed. He started to talk. We also started seeing a chiropractor. At the age of three (I was 29), we learned he was gluten intolerant :( We now have his allergy under control, with close monitoring on my part. I am stil learning all the various things that have gluten in them (I just learned that candy canes do). Fortunately, I was never one that cooked boxed foods very often, so I have just had to alter what I cook with. We have tested different flours, falling on love with some (almond and coconut), while detesting others (garbanzo). When he goes to birthday parties, I bring along gluten-free cupcakes. He has already learned that some foods are not gluten free and will hurt his stomach. He has been diagnosed now for about a year and a half, and now if he gets something with gluten in it, the diarrhea and sore bum starts within 6 hours, along with severe stomach cramping. We can only assume that he had that when he was younger, as well, but he was so use to it, that he didn't complain... it was all he knew.

I think the best piece of advice I can give, is to follow your instincts! Many times our doctors told us there was nothing wrong with pour son, but I knew that was not the case. Celiacs do not usually get diagnosed until they are in their 20s or 30s... because it takes that long for the scarring to be evident when biopsies are taken during colonoscopies. His "tests" always came back relatively normal - yet his symptoms screamed otherwise... and the results of putting him on a gluten-free diet really spelled things out for us! Our entire family now eats gluten-free. It was just easier to transition all of us then to make something different... what child wants to eat something different then everyone else. Thankfully there are restaurants out there that have gluten-free selections - even Olive Garden!

Petra May 10, 2010 at 10:31 PM  

Hi This for Shannon, I don't if you know but on the iphone there is an app that I believe is called "does that have gluten". One of my bosses uses it all the time, you type in the food name and the brand and it tells you. Works for a whole of boxed food at the grocery food. I'm just waiting for them to make one for that does dairy since my charge has a severe dairy allergy.

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