Last year my daughter was misdiagnosed with Molloscum Contagiosum.
Then we went to a dermatologist who told us she was surely allergic to berries and citrus.
Then we went to an allergist who said no, actually, she was she was allergic to peanuts.
And then her rash cleared up when she stopped eating peanut butter. That was back in September.
A few weeks ago she started being all rashy, again, and because I’d had some success going wheat-free for some skin issues, we decided to take her off wheat as well to see if it helped. It seemed to help, though it wasn’t the solution.
So we went to the allergist, and he tested her for wheat and peanut allergies.
They called yesterday to tell us that she isn’t testing allergic to either of those, and I should certainly put her back on wheat, and if that goes okay, try peanuts again. Bonus: The allergist suggested we take her to see a dermatologist. Probably because that went SO well, last time.
Okay, then.
So Chickadee had a bowl of pasta last night.
And woke up covered head to toe in rash this morning.
You know, because she’s not allergic.
THIS IS WHY I HATE DOCTORS. THE END.
That just stinks! I really hope they find something and it is an easy “something” to deal with! Sorry you are going through all of this.
Argle. And I have no assvice because, while they would probably produce mystery rashes simply to watch the resulting parental angst, my Children have managed to miss out on the hives-for-no-reason thing. Hope the cause is discovered SOONand that it doesn’t limit the MirHouse diet any more than has already happened.
Oh no! Is there something else in wheat products that could be the cause?? Or maybe its not an allergy but something else that maybe an internist could figure out? I just feel so bad for y’all.
Poor Chickie!!!!!!!!! No advice, just commiseration. Hang in there, Mama!
This may be a completely silly idea, but could she be allergic to some type of additive that is in wheat or peanut butter products? I know you mostly buy organic/clean food options, but it was just an idea….
Whatever it is, it must be incredibly frustrating and I really hope you find the answer soon!
I have to say that I went through this very thing with my son. He was tested for lupas (yes, lupas of all things) and all sorts of things. I thought the doctors were nuts also (still do). To this day, at certain times of the year he gets the rash. Poor Chickie– I hope it gets better, faster!
Sounds like my life. I hate being a medical mystery. I need to convince myself that doctors DON’T know more than they DO know so I won’t have such high expectations that they’ll actually be able to diagnose and treat me for something.
So sorry she’s having a hard time. Can you give her Benadryl for the rash? She could be allergic to gluten and not allergic to wheat. She could be allergic to wheat and not allergic to gluten. If they tested one but not the other on an IgE it wouldn’t show up. Also, she could be intolerant of either (or both) and it would not necessarily show up on the allergy tests most pediatricians use but still cause her no end of grief and discomfort.
I wondered about the gluten/wheat connection too. No advice here, just sympathy!
Well, that blows! So sorry.
Can you walk her rashy self into the doctor’s office and ask them to explain how she isn’t allergic to wheat if this is what happens after she eats it? Because…ugh.
I have no ideas (and no kids) but am praying for the both of you!
Mir, maybe a holistic doctor (or a naturopath) is in order?
http://www.holisticmedicine.org/displaycommon.cfm?an=1&subarticlenbr=118
I’ve gotten more useful information from the nutritionist at my natural health food store than at a traditional doctor’s office.
could she possibly haveCeliac Disease? It is a gluten allergy and not a wheat allergy at all, I know several people that were misdiagnosed for months (some years) before they figured out it was. It may be something to talk to the Dr’s about.
That is just awful. It is so frustrating to go back and forth with doctors and their differing diagnosis’. I hope that whatever it is gets figured out and cleared up for your sake and hers alike.
Argh! I’m so sorry you and Chickie are having to deal with this.
Mir, if you would just stop FEEDING that child, you would not have these problems. I mean honestly, how complicated is that?
(Kidding, of course. Didn’t Monkey have some sort of wheat/gluten sensitivity awhile back?)
Durr! Sux!
Ok, a nurse friend had major issues with so many things, finally got healthy after a loong time and now swears her life on Mangosteen juice. It’s expensive, but the results are phenomenal. Other than that I have nothing.
Oh, I have hugs. HUG!
Mir, you’ve probably already considered this angle and ruled it out…but, just in case. I noticed that the not-really-molloscum diagnosis was also in June. If I’m following the timeline correctly, this eventually died down with minor flares of rashiness but has now come back with a vengeance…also in June.
Is there any possibility of an environmental/weather/sun connection? Pool chemicals? Lawn chemicals? Mosquitoes or other varmints? Something happening in the neighborhood or general area in the way of bug spraying or grass treatment?
It sounds really, really frustrating…praying for patience for both you and Chickie.
BTW, that was totally not meant to be assvice. Do what you want! :)
Ah, doctors…so human. And to think I used to assume they had all the answers. So disappointing.
WTF…really. I hate when I get these types of answers from doctors. I had something similiar…and then I just took the advice of the one tha said do nothing, and you know what…I am feeling fine. All I am saying, is how frustrating, especially when the something icky is covering Chickadee.
Most allergists are intelligent enough to realize false negatives happen and symptoms are the most important thing in diagnosing an allergy.
Hang in there.
I’m going to play doctor internet here too and guess that it might be environmental rather then a food allergy. Just the timing of it seems to point to that. Maybe she’s allergic to summer break and should start attending school year-round! :)
I had an allergy test done through a whole health office that tested for the top 200 most common food allergies. It wasn’t cheap by any means, but how else would I have figured out brewer’s yeast and baker’s yeast were off the charts for me? The results showed how allergic you were to each thing – small reaction to blueberries, medium to lactose, wicked bad to yeast, etc. It was a simple bloodtest. (it also tests for immediate reactions and delayed reactions. Mine were all delayed reactions which made diagnosis that much crazier.) Best of luck to you!
UGH! My baby has horrible eczema and his allergy test came back positive for allergies but he tested negative for all of the things they tested him for both blood test and skin test. So freaking annoying. I’m sorry that you are getting the runaround on this.
My daughter used to break out in a horrible rash- especially on her neck and in the creases of her arms and legs. She would also develop what allergists refer to as “an allergic shiner” – an extra crease under her eye that would puff up when she was reacting to something. Being a terrible mom, I never took her to the allergist, and instead treated her as needed with allergy meds. She was always worst in the spring and summer. It has tapered down over the years, but this year when she went to college it was terrible. I thought she might have psoriasis, but the derm said it was allergic eczema. She got ointment that has helped but not cured. I think I may finally break down and put her through allergy tests this summer.
Mir, I’m am not going to diagnose your daughter here. Sorry if it sounds like that. But I will give you some information to do with as you please. A common symptom of Celiac disease is Dermatitis Herpetiformis. It is a severe itchy blistering rash that shows up when ingesting gluten. If your daughter has Celiac, an IgE allergy test to wheat will come back as negative because it’s not an IgE reaction. It’s an autoimmune reaction. If you remove wheat from her diet, then you will see an immediate improvement in the rash (which you did). If you introduce gluten again (Often called a gluten-challenge) symptoms will return almost immediately.
If this is a route you wish to pursue, you need to have a blood test done testing for Celiac while Chickadee is still eating gluten. If you take her off gluten, the test will possible come back negative because she doesn’t have gluten in your system. Feel free to email me if you have questions about this. I don’t want to write a book here if you are pretty sure this isn’t the issue.
Good luck finding answers. And if she does need to be gluten-free, it’s really not the end of the world. I promise. : )
Good Grief!!! I went through something similar when my son was finally diagnosed with severe GERD and an allergy to dairy. At only 7 weeks old. Ugh.
Poor sweeties.
Small glimmer of hope… if you go off of wheat for a while, you may be able to add it in on a rotation basis after her body processes whatever it needs to do. After a year or so.
Has she been eating pasta all winter/spring? If so, it is most likely not the culprit. Given that this started last June it sounds like something seasonal therefore, I would be thinking along those lines. It could be from Chlorine/sunscreen if she is outside/in the pool quite a bit? There are a number of viruses that you can pick up from working with dirt (although I can’t imagine she is doing that with any kind of regularity ;))that present as a rash. I would recommend a second opinion with a dermatologist that comes recommended or is at a well known university based facility.
These situations are so frustrating – I hope you find resolution soon.
Mama always knows best!
My friend’s son was in a similar predicament. He’d test allergic to something, then not allergic. It was insane. She made every freakin’ thing from scratch for him.
Then she found a new, better allergist. Turns out it wasn’t allergies at all but his immune system. He’s on a series of shots – I think he goes every week for awhile – and can eat everything. He’s like a totally new kid.
did you try alternative methods of diagnosis and treatment? best of luck!!
Could there be something in the sauce? tomatoes? Poor kid. Poor mom!
When I was a kid every so often we would go visit my grandfather in Florida. Every time we went, I would break out in horrible hives. We thought it was the intense sunburn I always got. He had a lot of citrus and fruit trees in the yard. It turns out I’m highly allergic to mangoes. One of the trees in the yard. Oddly enough, my mother has the same skin reaction, but can eat mangoes if someone peels them for her.
My point? It could be something topical rather than something ingested. Maybe. I will now stop giving unasked for advice.
Oh, dear. I hope you find an answer soon. Does she eat peanut butter now? Our vegetarian 8 year old practically lives on it some weeks.
For what it’s worth, another alternative medicine route is NAET (see naet.com). The downside is that it’s VERY alternative and I’m way too much of a hard scientist to believe in anything so ridiculous, but… I started bringing my younger daughter to a practitioner when she was a newborn because she presented as allergic to dairy, soy, corn, nuts, and peanuts. She was colicky, she regularly had blood in her diaper – it was bad. NAET is totally non-invasive and I was willing to try almost anything to stop the screaming. She’s now 16 months old and doesn’t seem to be allergic to anything. So when my older daughter started throwing up every time she had beef (and she was a BIG steak eater before) I brought her in, and after several weeks of treatments she no longer has a problem.
The diagnosis and treatment in NAET continue to seem very odd to me and my personal experience with both alternative and conventional medicine is that your willingness to believe in it is a huge factor. On the other hand, neither of my daughters has any idea what’s going on when they get treated and I’ve seen marked results with both of them.
I will also say, though, that I’ve gotten several treatments and I haven’t noticed any appreciable difference in how I feel. They would probably tell you I haven’t gotten enough treatments. I would tell you that no allergy treatment I get is going to make my kids sleep at night, so no matter what they do I’m not going to feel human again until the kids are teenagers and I can’t get them OUT of bed.
Also, in case you were hoping for MORE advice, there’s the Robyn O’Brien book “Unhealthy Truth†(http://www.amazon.com/Unhealthy-Truth-Food-Making-About/dp/0767930711/ref=sr_1_1?ie=UTF8&s=books&qid=1243995119&sr=8-1) which I’ve heard really good things about and am about to read.
Sorry for the long comment! Good luck and I hope you find a solution soon!
I had success in the last 10 years addressing food intolerances (slightly different from allergies) with the ALCAT test. It was not covered by insurance (argh!) but it changed my life.
On the other hand, my sister was intolerant of most food additives and preservatives as a child (BHA, BHT, TBHQ, Yellow #5, Polysorbate 80, etc etc etc). My mother had to cook everything from scratch for our family, but my sister was a different creature once she was off the chemicals.
Wishing you success in solving this mystery.
Oh, Mir. That sucks. A lot. I don’t have any answers, but I know how frustrating it is to watch your baby suffer through something those silly doctors can’t get right.
Hope she gets some answers soon!!
Big hugs all around. I will say it sounds a LOT like Celiac. I have several friends who are Celiac and they experience these rash symptoms too. Because it’s a gluten allergy it doesn’t show up as Wheat on the test, I think. But I’m just a lay person. Hope you figure it out with minimum co-pays!
Ah, the joys of mystery rashes and allergies! My son has food allergies so I’ve been dealing with stuff like this for the past 5 years. Here’s what I’ve learned: you can have conflicting test results (blood test or skin test), but the gold standard in food allergy testing is the food challenge. If you react, you react! Sounds like you did a food challenge & got a reaction – no matter what the other test result was. I’m guessing it was a blood test, given that they called you with the results. They may have decided not to do a skin test because she was already rashy.
Also keep in mind that sometimes rashes show up immediately, and sometimes they are time-delayed – just to add a twist to the detective work!
Hang in there, go with your gut & know you’re not alone!
Poor Chickadee! From what I’ve heard, I think asking about celiac makes sense. It could be that. I hope you get it cleared up (the rash, and the mystery) very soon.
Here was one article I found interesting on how often allergies are mis-diagnosed. It said the only way to truly know is actual visible reaction which is what Chickadee seems to have (hoping you find out why):
http://www.nytimes.com/2009/02/03/health/03well.html?_r=1&em
Oh, the all-knowing attitude of doctors who get it wrong! My faith in the infallability of medical folks developed from age 13-18, where *every* ailment other than an ingrown toenail I presented got a ‘huh. we don’t know what that is.’ As frustrating as it was, it was *infinitely* preferable to the false diagnoses and ‘you must not really have a problem’ approaches of the docs I saw after 18. I get that docs are under pressure to provide The Answer, but I have oodles more respect for my pediatricians now, since they were comfortable enough to admit that they were stumped.
Esp. with allergies, there’s a LOT that isn’t known, and trusting what happens, rather than what docs say, is the best approach. Now, if only insurance companies would support that …
Good luck to you and the itchy Chickadee!
I am so sad for you and Chickie!! I can’t believe the doctors told you to go ahead and put her back on wheat. CRAZY. I am also curious about other factors, like Beth said, but I’m sure you’ve wracked your brain to death about all the possibilities.
What I’m trying to say is I feel for you. HOpe you get it figured out soon.
Wow. I am learning a lot and I will see if I can pass medical boards after reading all these comments! Smart readers you have Mir! Good luck!
So sorry for Chickie, and I totally agree about doctors. Ugh. Just a thought, but my sis has terrible Crohns disease that the best specialist in the country couldn’t do much for (he basically told her to live with it – it being intense joint pain and bleeding from her – well, you get the picture). She saw a naturopathic doctor who tested her for food allergies and is now on a no wheat/diary/gluten/eggs diet. Also ugh, but she is feeling so much better. I’m mentioning this because when they tested they tested for EVERYTHING – from individual fruits/vegs (she’s sensitive to cranberry but no other fruit for example) to every grain you can imagine. She has 4 pages of info, and I was thinking it might be something this specific you need for Chickie. Good luck and just a side note to say how I envy your garden from up here in the middle of the North Atlantic. (I just paid $1.99 for an avocado. One. Avocado. Sigh.)
I agree with some of the other posts that perhaps it may be environmental. Or perhaps a combination of food and environment. My son’s skin seems to be sensitive as well; I can expect a rash whenever the seasons change. Good luck on finding what the real issue may be.
WARNING: More uninvited suggestions coming…I still think you should have her checked for Celiac, I’m sorry. :-( I’m also sorry for everything she (and you) are going through, trying to determine the problem. Hang in there.
Hey – I’m trying a new allergist for my daughter and thought I’d share the website: http://foodallergyatlanta.com/
They have a location in Lawrenceville which isn’t close to you but its not far either….
Just felt like they may be more open and comforting than the one we were seeing. keep us updated!