Welcome => Welcome and Introduce Yourself => Topic started by: StephanieAc on February 23, 2015, 09:38:58 PM
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Title: Please help!
Post by: StephanieAc on February 23, 2015, 09:38:58 PM
I need some input. I just found out today, at 25 years old, that I'm allergic to peanuts via a RAST food panel blood test. I didn't ever have any symptoms other than a stomach ache for a few minutes after eating most nuts, which started pretty recently. I also have an allergy to wheat, which I eat every single day, corn, and milk. It's all very odd to me. Does anyone know about these tests and their rate of false positives or have any suggestions as to what I should do?
I'm also penicillin allergic, which worries me about meat, soy sensitive…and I have an allergy to the mold that grows on fruit and veggies lol. I'm going to the allergist for further testing tomorrow, I'd just love some input! Thanks! :bye:
Title: Re: Please help!
Post by: Janelle205 on February 24, 2015, 01:58:17 AM
The rate of false positives for RAST and skin testing as well, is pretty high. I don't have the exact statistics, but I know that there are other members here that can point you in the right direction. If you are eating something every day without having issues, the likelihood that you are actually allergic to it is very, very low.
I have a number of food allergies, but there are things that I skin test positive to, and things that I RAST test positive to that I eat frequently with no issues at all.
If there is an allergist in your area that specializes in food allergies, I would try to see that doc for another opinion. Docs that do mostly environmental allergies are often not as good, or as up to date on the particulars of food allergies. It is really, really important to get a good allergist. Before I got my current doc, my previous allergist gave me advice that I am nearly certain would have killed me if I had followed it.
Title: Re: Please help!
Post by: GoingNuts on February 24, 2015, 05:53:15 AM
Welcome Stephanie!
I second Janelle's suggestion about being certain that you see a Board Certified Allergist who is knowledgeable about food allergies, not just environmentals.
RAST testing alone means almost nothing; it has to be considered along with a clinical history. As my old allergist always said, he doesn't treat test results, he treats patients and symptoms.
Who has been doing the testing? And what made you seek it in the first place? Those answers may help us help you. :)
Title: Re: Please help!
Post by: PurpleCat on February 24, 2015, 07:13:42 AM
What they both said.
Reactions trump testing.
False positives are common.
My DD tests positive to apples but eats them often. She tests positive for shellfish and can not eat lobster or crab, however, she eats shrimp all the time!
Title: Re: Please help!
Post by: StephanieAc on February 24, 2015, 10:11:56 AM
Thank you so much for all of the replies! I'm gonna try and answer all of them. Well, I had some skin prick tests for only environmental allergies done by someone who I THOUGHT was an allergist, she was just a tech, as it turns out. I came up positive for a lot of molds, pecan trees (and thus fresh pecans) and trees. Molds that grow on veggies and fruits, as well…anyway… after that test I got a fever, which …was odd (Has that happened to anyone else by the way? I get fevers from a lot of things like colonics, colonoscopies… gross I know, sorry) Anyway, back on topic. Then I had the RAST test done by my GP. They told me they didn't know how to interpret the numbers, so they weren't sure just how severe my allergies were. They just saw that it came up as abnormal.
The reason I went for testing is because I started to feel odd after eating certain foods. Sushi (even just avocado rolls with no fish) started to make my heart race. I thought it could be a soy allergy (someone also told me that wheat allergies make you very sensitive to soy…) or it could be the high amount of salt. Benedryl wouldn't even really work, which was scary,so I cut out the sushi all together and much chinese food, although I recently had some with oyster sauce and I was fine…weird.
I also started to break out randomly. I broke out twice when I had some coconut milk ice cream… half of my face broke out…and once when I had some mayo and organic chicken with a little bit of vinegar and oregano. That's something I eat all the time, so it struck me as odd. The hives on my face actually occurred after I took benedryl because my tongue felt strange, so I took it. I was told that this was REALLY BAD by my GP, which scared me even more. So he took the test.
I'm going to a specialist today for skin prick tests (I'm guessing because they told me not to take any benedryl, etc. for 24 hours…) and I'm going to see if he can either give me another blood test or get the results from my GP so that I can have him interpret the numbers.
The other thing is that I have severe anxiety and panic disorder. I was hoping the hives, etc. were all results of me panicking from slight reactions, but now that I got those results I became extremely worried. I'm honestly too nervous to eat anything because, as it is, I was living off of crackers and now… they said wheat. Oy… It's weird to have your life turned upside down at 25, but honestly, I'm so glad I found this forum!
Title: Re: Please help!
Post by: StephanieAc on February 27, 2015, 06:10:19 PM
Update! Sorry! So I got the results back. Highest was wheat at .77. Moderate. I always eat wheat, so does this mean I can continue to do so? It's such a low number. Everything else was .15-.33... All low and then the rest were negative or under .10 which was I think called equivocal/low. So I'm wondering... Can I eat wheat? It was smack dab in the middle of moderate. The first specialist I went to said I can't have allergies that I didn't have as a kid and sent me home lol so I'm going to another specialist Tuesday.
Title: Re: Please help!
Post by: PurpleCat on February 28, 2015, 07:45:38 AM
I don't know much about wheat allergy and the potential for celiac disease.
I can tell you that in our experience, nothing about allergies is black and white. Nothing!
What I do know is if my DD tests positive to a food she eats, her allergist advises her to continue to eat that food. Her allergist does not believe in eliminating a food that is not a true allergen.
Apples and shrimp fall into this category for DD, although she will react to other foods in the same family for both such as pears and lobster. There is no explanation as to why she can eat shrimp and not lobster or crab. Makes no logical sense.
They are also both "cousins" to some of her environmental allergies which may be another reason why she tests positive but can eat them. Apple/Birch Trees. Shrimp/Dustmites.
I suggest waiting to decide until you see the next specialist on Tuesday.
Title: Re: Please help!
Post by: GoingNuts on February 28, 2015, 07:52:28 AM
We had also received the same advice - when he was younger DS tested positive on a few things he ate all the time, so allergist said to continue eating them. At the same time he tested negative to something he was clearly allergic to (milk), so allergist said to disregard the test results and avoid milk. He was eventually able to consume baked milk, and then ultimately uncooked milk. :)
Title: Re: Please help!
Post by: YouKnowWho on February 28, 2015, 08:58:30 AM
I would run screaming from any health care practitioner who left you to interpret results on your own. I would also be wary of any provider that did a blanket food allergy test.
You need an allergist that specializes in foods and not an environmental allergist who will tag on food allergies.
Title: Re: Please help!
Post by: guess on February 28, 2015, 09:14:13 AM
I don't mean to be harsh but you need a solid health care professional who can and will help you move from vague queasy tummy feelings and vague test results to (a) determination if your life is at risk (b) determination of how much of your quality of life is at risk.
This will require an experienced and well qualified board certified allergist whose true depth of knowledge and practice includes IgE-mediated food allergy and anaphylaxis management. If you see this as a game with 'lol' that means the needle has not moved at all towards such a professional that would lead you reliably with tests results, history of reaction or lack of reaction, and what is key here: in office food challenges preferably double blind.
Too many doctors or alt med or dermatologists, etc., try to play in the sandbox of food allergy and anaphylaxis. Either you are in danger of anaphylaxis, or you are unnecessarily endangering your quality of life by assuming by test results alone that you are allergic or not allergic.
All assuming we're having a conversation about IgE-mediation and not EoE, non IgE-mediated, or potential celiac which requires an experienced GI doctor who can administer up to the gold standard for celiac diagnosis and proper lifetime care treatment for all potential health risks of celiac.
Try AAAAI.org for their provider search. Find one that lists a specialty in food allergy and anaphylaxis. We can't medically advise you but have sort of a group experience as informed patients. Although it would not be unreasonable to carry an EpiPen on you just in case until you have this sorted out. Better safer than sorry.
Title: Re: Please help!
Post by: Macabre on February 28, 2015, 10:13:15 AM
I'm going to suggest we merge this thread with the other one in Adults--and keep the subject line of the Adults one, as it will be helpful for finding this info.
And I believe we should remove the posts of the OP that have the same information. There is a lot of good informaton in both threads. It would be helpful for it to be in one place. :yes:
Title: Re: Please help!
Post by: guess on February 28, 2015, 11:17:14 AM
Double post.
Title: Re: Please help!
Post by: StephanieAc on February 28, 2015, 03:18:50 PM
Thanks for being rude, guess. I said LOL bc it was so ridiculous that he just sent me Home. Thanks for the advice, I guess.
Title: Re: Please help!
Post by: StephanieAc on February 28, 2015, 03:20:13 PM
And I had a celiac test. Negative. But wheat came back positive. They said its two different things.
Title: Re: Please help!
Post by: YouKnowWho on February 28, 2015, 05:49:16 PM
DS1 has anaphylaxis to wheat and barley (and all likelihood rye but he hasn't had to test that one in real life yet, just has numbers that are off the charts). He does not have Celiac.
I don't see Guess as being rude, maybe I missed a post or maybe I am just used to her posting style. She was just saying what the rest of us have said that a good practitioner is what you need to see. Many alt med professionals (ie chiropractors, naturopaths, etc) will test for foods based on IgG testing which have no true meaning (despite them telling you otherwise). And as I posted before, even all allergists are not created equal which is why I mentioned finding an allergist that specializes in food allergies than environmental allergists. I question any doctor who wants you to interpret results rather than interpreting them for you.
Title: Re: Please help!
Post by: StephanieAc on March 01, 2015, 07:40:28 PM
I'm seeing an allergist Tuesday. The GP took the blood tests, they said they didn't know how to interpret them, but it was pretty simple by the chart that was given. That's all I really had to go on. I'm going to give the test to the allergist. I'm assuming he's going to do a skin prick test and possibly some blood work of his own. He specializes in food allergies and asthma. He came highly recommended. I just thought that assuming that my saying "lol" means I don't take this seriously was pretty rude. I haven't eaten anything but one baked potato a day in weeks because my GP scared me so badly. I don't take this lightly at all…for myself or anyone else. It's extremely serious and I find it rude to assume otherwise. I lost 25 lbs in a month… I'm exhausted…and the fact that the other allergist that i went to (who was certified and had all types of certifications, diplomas, etc.) said that it's impossible to develop a food allergy and then told me to go home and eat whatever I wanted… he wouldn't even LOOK at the test results from the GP or take any tests of his own… I just thought that was absurd, so I wrote lol. I am getting another opinion from someone who, again, came highly recommended. I'm praying he gives me some actual answers…
Title: Re: Please help!
Post by: StephanieAc on March 01, 2015, 07:42:26 PM
Side note: the new allergist is also certified and is part of a "group" of specialists I guess you can call them. I apologize if I'm coming off high strung, but when you're scared to eat anything for weeks, I guess that does that to you… :-/
Title: Re: Please help!
Post by: StephanieAc on March 01, 2015, 07:46:36 PM
I don't "see this as a game" either… why would I see something life threatening as a game. That…is what was rude. Okay, I'm done now. Thanks.
Title: Re: Please help!
Post by: YouKnowWho on March 01, 2015, 10:18:48 PM
Believe it or not - there are many of us here who can understand. We have pulled back and held with baited breathe when ourselves or our kids took bites. And were horrified when our allergy lists grew, not shrunk. Last November, I thought my 4yo escaped the curse of food allergies - she was 4.5 and had no issues, she had anaphlaxsis to macadamia nuts. And a few weeks later, to Nutella.
And many of us unfortunately have dealt with professionals that are tools. My ped told me kids don't develop allergies until the age of 2 - when DS1 was failure to thrive, covered in a rash, while I was breastfeeding. When I pushed for a second opinion, he reluctantly gave me the name of a clinic who just ran basic tests, told me to get rid of the dog and sent me on my way. DS1 had anaphylaxsis to barley and when I called them they told me barley couldn't have caused it, it was clearly nut contamination. I drove to the ER regardless.
Another allergist decided my son was too skinny and he was clearly eating foods he was allergic to so she went through with testing - wheat, rye, barley, corn, rice, oats, eggs, dairy, soy, peanuts and tree nuts. Why? Because she was an enviromental allergist who thought she could handle food allergies.
It's why I was urging you to find someone who would not blow you off and direct you in a better direction :grouphug:
Title: Re: Please help!
Post by: GoingNuts on March 01, 2015, 10:23:54 PM
Good luck Stephanie, I hope this new allergist knows their stuff and takes the time to help you figure it out!
Title: Re: Please help!
Post by: Stephanie on March 03, 2015, 03:52:30 PM
That's awful!! I'm so sorry about your experiences. I can't imagine going through this with a child. You're babies are so lucky to have someone as diligent as you and who cares so much. Thank you both so much for your kid words. I went today. I got some tests done and I think I finally found my guy. He is a specialist with food allergies and asthma. He told me a lot of my symptoms could be from panicked breathing, which, could close one's throat! Believe it or not. I also Habe very fair and sensitive skin. He told me a lot of other stuff, but we are moving towards food challenges. He said he needs me to eat and get back to a healthy body. Again, thank you for your support. I truly hope you and your children all have found or find people who can help you in every way you need. This support system has been invaluable to me! You guys are great!
Title: Re: Please help!
Post by: Stephanie on March 03, 2015, 03:53:47 PM
Ps: that was me. Idk why I'm coming up as a guest? I'm logged in... Odd.
Title: Re: Please help!
Post by: GoingNuts on March 03, 2015, 07:57:53 PM
Stephanie, I hope this doc is "the one"!
And FWIW, many of us here seem to have that fair, super sensitive skin. Sometimes it reacts for no apparent reason, and it's easy to assume it is FA related when it's really just irritated.
It can get pretty confusing, even after years of dealing with FA's. :dunce: :insane:
Title: Re: Please help!
Post by: YouKnowWho on March 06, 2015, 08:25:33 AM
I keep checking in for an update - I hope you found some answers at your appt.
Title: Re: Please help!
Post by: StephanieAc on March 07, 2015, 07:42:16 PM
Hey guys! You're so sweet for checking back, I'm so sorry it took me so long to update everyone. I've literally been at his office pretty much every single day for testing and then food challenges. I went in on Tuesday and had skin prick tests and for him to look at and interpret my RAST test results. Then he told me that the rast test results were super low, which is great, and he told me that he wanted to do the skin prick test. None of the foods that showed up on the RAST test as abnormal came up on my skin prick test! Now I know that neither of these is definitive. but that was enough for him to want to do some food challenges. He actually saw that a big lump came from clams and smaller ones came from crab and walnuts, so he took more blood for a shellfish and tree nut pane;l, ill get the results next week some time… anyway he is an AMAZING doctor! Like one of you said, he said, I treat symptoms, not the tests lol anyway so i went in in wednesday and did a milk challenge (I haven't had milk in a year and a half because I am lactose intolerant so I brought lactaid, which I haven't ever had either ) Anyway I passed! When I got home I was sick to my stomach a little bit and my tongue felt a little bit tingly a few hours later, but he also works ith a lot of people with anxiety and asthma and breathing stuff, so he said it was probably my nerves and it's nothing to worry about because it was so long after the fact. I also went in for peanut (I only ate like 5 peanuts bc I was so scared, but he said that was enough to tell that I'm not allergic bc of how severe pent allergies are) ad a wheat food challenge, passed both! Super excited ! He basically told me that, like I said earlier, my skin is prone to be irritated and my panic and anxiety disorders probably caused a lot of my breathing issues. He taught me breathing techniques and said that you can actually make your throat close from breathing in a panicked way through your mouth! YIKES! anyway, I have been doing everything he said to and he did mention a daily antihysthemine, but he didn't bring it up when we had our last weekly meeting. Well, our last meeting, actually, for a while. He's going to mail me my RAST results (the new ones) and then i will call him and we will go over them. I'll ask him about the daily medication when I talk to him for that. I am really happy because he totally listened to me and he was SO sweet and kind,. I'm thankful I found him I'm sorry if there are tons of typos. For some reason, my computer won't let me see what I'm typing until after the fact an then I can't correct it? It's just really slow right now, but I wanted to update you guys! :) (hope I didn't offend anyone with my haha's or lols… I assure you i am still taking this very seriously! I am just super relieved to have passed those tests. I had my first full meal in 3 weeks tonight and I am so energized, it's really insane. how much you feel better with a good meal in your system!)
Title: Re: Please help!
Post by: PurpleCat on March 08, 2015, 06:55:50 AM
That all makes much more sense and your quality of life is improved which is fantastic! The less allergens you end up having to deal with the better! Hoping you have some more passes.
Title: Re: Please help!
Post by: GoingNuts on March 08, 2015, 07:55:40 AM
Here's to more passes! :cocktail: So glad to hear you're feeling better!
Title: Re: Please help!
Post by: ninjaroll on March 08, 2015, 12:48:14 PM
:thumbsup: I am so, so happy to hear the great news. It's a hard road that we would have helped you if you needed it but enjoy the resulting freedom!!
Title: Re: Please help!
Post by: StephanieAc on March 08, 2015, 09:34:47 PM
Thank you all so much for the support and for being so nice! I really appreciate it! :heart:
Title: Re: Please help!
Post by: spacecanada on March 09, 2015, 04:27:03 PM
This is so fantastic!! Finding a good allergist who will listen and explain things is HUGE. Congratulations on the passed challenges. Hoping for more good news!
Title: Re: Please help!
Post by: StephanieAc on March 09, 2015, 05:27:23 PM
Thank you so much! It really was a huge deal for me. He's literally my hero. My life was being controlled by anxiety about food and my breathing etc. and he just pulled me right out of it. I told my mother that most doctors were saying (without actually saying it) "I'm right because I'm a doctor, so believe me." Instead, this doctor said (without saying it lol) "I'm right because I'm a doctor and I will show you I'm right". He told me from the start that he was going to prove everything to me and not just make me believe him because "he said so." Which was SO helpful because it helped me to trust him. Now I honestly trust him completely.
Title: Re: Please help!
Post by: YouKnowWho on March 10, 2015, 09:42:20 AM
Now you know why we were pushing for you to see someone who had a clue, who didn't leave it up to you to figure out, etc.
A good allergist is worth their weight in gold.
Title: Re: Please help!
Post by: StephanieAc on March 10, 2015, 09:42:41 PM
You're right. More than right. And I'm thankfu for you all and my in-laws who suggested my current doctor. He really is a gem!