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Guhlia

New Update On Annika

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We finally got referred to an allergist by our dermatologist. I really didn't like her, but the nurses were great. She tested her for soy, egg, milk, wheat, and corn. She tested negative for all of those. They couldn't do any others because there was only a small patch on her back that was clear. I was SSSSSOOOOOOOOOOOOOOOOOOOOO pissed they tested for wheat fully knowing that I'm Celiac. Obviously that's not what was causing the rash so WHY would they test for that when they knew they could only test for a few things?!?!?! Anyway, they sent us for bloodwork to confirm the scratch test results. That was more than horrible. It took three women and 9 tries to finally get blood. All I could do was stand there and cry listening to my baby girl screaming for almost half an hour. I was ready to just grab her and run out of there. I really didn't want to have to go back though. We are still back on the elimination diet because her rash got so bad it was bleeding. I'm having a problem though keeping my milk supply up while on the diet, even though I'm adding coconut oil to everything and eating like a horse and drinking water like crazy. I don't know why my milk is effected, but it is. Anyway, her rash is clearing up very quickly and I'm hoping they'll do the scratch test for some other things at our next appointment.

What do you guys think? I really thought that she might be intolerant to milk or eggs and now we got negative results... Is it possible to react like this to something you're not allergic to? For the sake of argument, please just assume the results were accurate. Is that possible? Could an intolerance, not true allergy, cause this?

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Hi Angie,

I don't think I have any information that can help you. I just wanted to let you know I am keeping you guys in my thoughts. Love the new avatar, she is so cute!

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My son reacts to different foods and all allergy testing came back negative. The best way to test is to do a food trial, leave the food away for a while and then introduce one thing at a time every 7 days. That way you can make sure what she is reacting to. We are gluten, soy and nut free but also have restricted his diet from corn, tangerines, blueberries and many other foods because of reactions. He would also break out in rashes/eczema when he couldn't tolerate it.

So yes this absolutely possible for her to react to food even if the tests show up negative.

We finally got referred to an allergist by our dermatologist. I really didn't like her, but the nurses were great. She tested her for soy, egg, milk, wheat, and corn. She tested negative for all of those. They couldn't do any others because there was only a small patch on her back that was clear. I was SSSSSOOOOOOOOOOOOOOOOOOOOO pissed they tested for wheat fully knowing that I'm Celiac. Obviously that's not what was causing the rash so WHY would they test for that when they knew they could only test for a few things?!?!?! Anyway, they sent us for bloodwork to confirm the scratch test results. That was more than horrible. It took three women and 9 tries to finally get blood. All I could do was stand there and cry listening to my baby girl screaming for almost half an hour. I was ready to just grab her and run out of there. I really didn't want to have to go back though. We are still back on the elimination diet because her rash got so bad it was bleeding. I'm having a problem though keeping my milk supply up while on the diet, even though I'm adding coconut oil to everything and eating like a horse and drinking water like crazy. I don't know why my milk is effected, but it is. Anyway, her rash is clearing up very quickly and I'm hoping they'll do the scratch test for some other things at our next appointment.

What do you guys think? I really thought that she might be intolerant to milk or eggs and now we got negative results... Is it possible to react like this to something you're not allergic to? For the sake of argument, please just assume the results were accurate. Is that possible? Could an intolerance, not true allergy, cause this?

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Just wanted to suggest mothers milk tea or something similar for milk supply, and make sure you're still taking a (allergy-free) multivitamin. Is she nursing any less often, being so miserable?

Also, sorry if you've already posted this, but if her rash is clearing up (due to your diet, or medication or what?), then what are the other symptoms you're trying to help now?

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Im sorry you had to go through that with no answers still. I know from personal experience scratch tests are not a good indicator for the most part of food allergies. My daughter came up as negative with a dairy allergy through blood and scratch test even though her bright red cheeks went away when she was off dairy. Im guessing that maybe your milk is drying up because of the stress.

A corn allergy might be a possibility also if eliminating soy, dairy, and egg do not work for helping her reaction. A corn allergy is not nearly as simple as one might think. Delphi avoiding corn forums is a good place to start if the other foods being removed does not help.

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The skin tests are only for IGE allergies not IGG. Ige are the ones that cause you to break out in hives, stop breathing, swell, hay fever type symptoms - that sort of thing. You can be allergic to wheat and have Celiac. Eggs, soy, milk, wheat are the major allergens and the most likely to cause trouble. Apparently, they have to rule out IGe reactions first and then move onto the IGG which cause tummy troubles. IF I remember right the blood work is to test for the IGG reactions and that will tell if she is allergic to any of them. From what I understand, IGG cause the tummy troubles - eat mushrooms die in bathroom within a couple of hours- and IGE cause the rashes and such.

She may very wel have the IGG reaction to food and that is causing her problems or it may not be. At her age , the elimatnion diet is the only way to know for sure what causes it. we have just done that so I can tell you that story if you want to hear it.

It is important to know if it is allergy (which type) verses disease and it can take awhile to figure that out.

As to the blood draw------ do not be intimidated by blood draws. I have had tons done on my baby and I walk in with the same request each and every time. And I say it like this----- You only get one chance to stick her. Screw it up and you won't get another chance. You need to call the best you have in the building in here to do this blood draw or else you will not be allowed to do another. If no one in here feels they can do a blood draw in one stick, then you need to call the pediatric physical therapist in here to do a line. Do not send in a trainee, as you will not be practicing on my child today. If you can't accommodate this today, then we need to arrange a time when you can.

Only the first time did she get stuck twice. She stuck her once and failed and I said Got your chance get someone else. IF they can't do it, we will leave. Since then, they know me well and only send in the most confidant and experienced person. They did try one draw of sticking in the needle and then wiggling it around until they hit the vein and I chewed them up for that and just as I was about to remove the needle from the nurse, she got it in. They didn't do that again after a few choice words. Don't be afraid to refuse someone who looks nervous or looks inexperienced or you just get bad vibes from. It's your baby. They can't stick her until you give them the okay. Even putting in ivs, I do this. Only the best and no one else. There are other ways if they have to and trust me, I have made them do it other ways.

Stacie

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Is it possible to react like this to something you're not allergic to? For the sake of argument, please just assume the results were accurate. Is that possible? Could an intolerance, not true allergy, cause this?

Oh, absolutely. There are different types of allergies and intolerances - and most doctors reserve the term "allergy" for IgE-mediated allergies - the ones that cause hives and, in severe cases, anaphylaxis. IgE is short for immunoglobulin E. Celiac Disease is not an IgE-mediated allergy, but instead has to do with immunoglobulins A and G - IgA and IgG. IgE allergies are easy to test for, but other types of intolerance are harder.

Board-certified allergists are specialists in IgE allergies. They don't really even think of anything else as "allergy." So they will look you in the eye and tell you your child is not allergic to ____ if your child does not show IgE antibodies for that thing.

My oldest son has a very severe IgE allergy to peanuts - anaphylaxis, etc. He also has Celiac Disease. They could run all the tests they want in an allergist's office, and they will not show him to be allergic to wheat.

I went through this frustration when my youngest child was having a problem with cereals causing eczema-type rashes and vomiting. I took him to our (very, very good children's allergy clinic) and had him tested for a variety of allergies - wheat, oats, rice, etc. I told the doctor his symptoms and even told her I thought it might be related to my own problems at the time - I showed her my rashed up elbows, etc. She said, oh, looks like some type of eczema. When the tests came back mostly negative (except one skin prick test for rice turned up mildly positive, which she dismissed because it's rare) - she did not offer me any advice that would have pointed me toward Celiac Disease.

There is a problem of "specialty blindness" - physicians get trained in their specialty and know little to nothing outside of their specialty. This wouldn't bother me so much if they tended to tell you this so you can keep talking to other physicians. But too many times they just act like your symptoms are no big deal if they can't make sense of them themselves.

Sorry for ranting a bit - I really still go to my good allergist's office for allergy advice. But I stay far clear when it comes to intolerances.

My pediatric GI has been really wonderful - he's in the same children's hospital. When I told him what had happened at the allergist's office, he rolled his eyes and said something like allergists don't believe that intolerances exist, or something like that. He's part of a group researching IgG and other types of food reactions that cause eosinophilic disorders.

If you find a doc who knows about eosinophilic disorders, they might be willing to do what's called a "patch test" on your daughter. That's where they apply foods and leave them on the skin for a longer period of time (like a day or two), covered. My doc said this area of testing is not that accurate yet - and new tests are needed. Apparently there are many different SUB-classes of IgG - and only some of them are responsible for these types of reactions. We haven't done the IgG testing because he has not strongly recommended it - but next time we go in, I may ask about it again.

I apologize that this is long. If you can't find a physician knowledgeable about this emerging area, your best bet is to use elimination diets and your own eyes to figure out your daugther's intolerances.

It's hard!

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IF I remember right the blood work is to test for the IGG reactions and that will tell if she is allergic to any of them.

I just wanted to comment from my experiences with allergists...any blood test a board-certified allergist gives is likely to be for IgE allergies as well. My sons have these blood tests regularly for their peanut and soy allergies - tests with names like RAST, CAPRAST, ImmunoCAP. They have all been for IgE allergies.

Some really englighted allergists might consider testing for other antibodies.

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I couldn't remember what he said the blood tests were for. I thought they were for IGG's but he may have been talking about another test. He just said they were really expensive and too new to be highly realiable. My allergist didn't want to do blood tests because the diet trials were cheaper and if done right, 100% correct where as the blood test have a lot of false and positive results. He does believe in intestional allergies and intolerance just not that they take 2 weeks to show up like the ped gi thinks they do. And that they won't take weeks or months to straighten out. If you find the food causing the allergy reaction ,then removing it should remove the symptoms. that's why the ped gi and him are at odds. THe ped gi says taking a month or two to get a normal stool is normal for an allergy after removing the food and the allergist says it shouldn't take but a couple of days at most to show up in the stool and a no more than a week or two at most in extreme cases to clear up. Couldn't say who is right or wrong about all of that. But it does make it difficult to decide if you have an allergy, intolerance, or gut issue when the experts having conflicting opinions.

Stacie

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I just wanted to add that my son's allergist told me that the skin testing was only about 85% accurate and that it is seldom done on children under 2 because it is even less accurate for kids that young. My son was skin prick tested at the age of about 15 months for food allergies and came up clear. He is now just over 2 1/2 and was tested again using the same test but had a reaction to soy this time. He did not react to dairy but he gets hives from dairy and all of his skin problems cleared up once we took him off of dairy. His allergist decided that the skin test for dairy was likely a false negative even before we had any positive dietary response to show for it just based on the hives that we could only explain as being a dairy reaction. So don't put all your faith in the skin testing.

I also see the same allergist and only react to the skin test for dairy products but did an elimination diet to determine that I am also allergic to soy, corn, and yeast as well as intolerant (meaning I can cheat with a little bit once in a while) to egg yolk and peanuts. I have had a positive reaction to these foods on skin prick tests in the past. My allergist told me that the reason for that is the allergies can clear up and come back in certain circumstances (like a change in hormones during pregnancy) but that intolerances tend to last a lifetime. He also and that if you avoid a food you are allergic to for long enough you will not have a positive skin test response to it because the body will stop reacting to the food the same way a person who has never been exposed to a food will not react to it (but if you start eating the food again the allergy is likely to come back).

You may already know a lot of this but I thought I would post anyway since I have been dealing with food allergies all my life and some of this was new info to me. I have only been seeing this allergist for a little over a year and I found that he is very willing to take the time to explain the why behind what he is testing for or asking about, which is very refreshing.

As a mother whose son just now finally went 2 full weeks without scratching his dry rashy skin in his sleep until he bled, I can understand the frustration you are experiencing looking for those answers. Good luck with finding the answers for your daughter. I know you will eventually figure it all out.

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GARLIC?!?!?! I haven't added anything else back into my diet. I just realized that the only time (generally) that I use garlic is in conjunction with tomato products which I've cut out or with cheese which I've also cut out. Today I made tuna salad for lunch and then something else with garlic in it for dinner and bingo, she had a couple of little welts pop up. Its not a full body rash like before, but it also wasn't a whole lot of garlic. That would make sense as to why we kept thinking it was dairy or tomato or egg. All of those things I eat with garlic on them. I don't know why I didn't put two and two together before. Is it possible to be allergic or intolerant to garlic? I literally have pictures of her at 2:55 this afternoon and her skin was CLEAR. By 7:00 her eyebrows were red and dry looking, she has a little bit of irritation on her head, and a few small welts on her back. I am praying that this will be our answer. I've felt confident before though that we solved this thing and we didn't. I guess I'll just eliminate garlic and start adding other things back in two weeks at a time after she's completely clear. Unless of course someone has a better idea. I'll also be calling our allergist tomorrow.

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Angie,

Yes it is possible to be sensitive to garlic. When I had my blood drawn for the 96 foods garlic was one item that showed positive. I rarely ever have garlic now. Also now that I have been away from it for so long the flavor is almost too strong for me now. I also can't eat onions. Hope that helps. Hope she gets better.

Susan

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If garlic does turn out to be the problem, be careful with all members of the Allium genus of plants including onions, leeks, chives, and shallots, as well as garlic. Also watch out for all kinds of lilies - same family. My mom was so allergic that not only could she not eat onions, garlic, etc., but she had to avoid church and grocery stores around Easter because of all the Easter lilies. :(

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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