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#1 of 44 Old 06-27-2008, 10:37 PM - Thread Starter
 
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I was just wondering which allergy test seemed to be the most helpful/accurate for your families? SPT, RAST, ELISA, SAGE, ALCAT, CRYSTALS? i would have liked to do a poll, but i dont know how
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#2 of 44 Old 06-27-2008, 11:00 PM
 
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Good question!

As testing goes, SPT was most accurate.

Least accurate (and by that, I mean, inaccurate) were the RAST and Muscle Testing.

This wasn't part of your question, but the *best* thing we did was a food journal. That helped us identify more allergies/sensitivities than anything else. Although, I don't think I would have figured out corn on my own because it's in so many foods (spt identified it).
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#3 of 44 Old 06-28-2008, 10:59 AM
 
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interesting on the spt being most accurate for you. everything i've read recently says that SPTs are not appropriate/accurate for food allergies... DD1 is over 3 now (she was 20m when we began the allergy-figuring-out-process/mouse wheel), so maybe it's a better option for us now than before. We are still figuring things out after RASTs, ELIZAs, elimination diets, Body Ecology Diet (most successful, but I couldn't deal with the food-related tantrums and the increased expense), as well as extensive food journaling (5 months worth). All we know FOR SURE are: dairy, soy & green peas. We suspect/are avoiding much, much, much more. Food = scary right now.

Nessa, DD1 (5) DD2 (3) & expecting again in late February/early March!
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#4 of 44 Old 06-28-2008, 11:56 AM - Thread Starter
 
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I hear ya loud and clear, menomena! I feel like I have elim so much that i dont have enough left to rotate at all. I was asking about the testing because I am really desperate right now and feel like. I didnt want to do the spt because I have read 2 books that mention the concern over spt causing allergies. what a kick in the pants, right?! The eliza didnt work that well for you either? I have heard that the RASTs arent great. I know there is prolly no really good one, but I just figured i would ask. I trust the opinions of these mamas more than the docs, kwim?
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#5 of 44 Old 06-28-2008, 01:08 PM
 
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Just FYI, my dd was 15 mths when she had the SPT. It obviously only works for IgE/histamine-mediated allergies, so it's not going to pick up all the other intolerance and sensitivities. And the panel we did only had the Big 8 allergens+ corn. The RAST had many more, but came back negative (inluding neg for corn and dairy which we'd identified with the SPT).
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#6 of 44 Old 06-28-2008, 03:31 PM
 
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We did a RAST, and it showed nothing except a slight allergy to peanuts (which may or may not have been a false positive, since RAST is notoriously unreliable for kids under 1yo.) We didn't do the SPT because it's not recommend for kids with eczema- since their skin is already so reactive, you have the potential of getting a lot of false positives (the skin will swell and get red when you poke it, whether there's an allergen there or not.) I also wasn't comfortable with her getting SPT for foods that she hadn't been exposed to yet, because there is always the risk of sensitization to new things on first exposure. And.. since she reacts through my BM, I didn't want to see what kind of reaction she would have with a direct exposure test like the SPT. (I know that the amount of allergen they expose you to is really small... but so is DD.)

We did the ELISA, and it came back with 30 positive food intolerances for DD, and mine came back with about 10 (we also did our ELISAs through different labs, with different testing methods). We have found quite a few false negatives so far. But there were SO many foods that DD was reacting to, it was nice to have a big list of things NOT to eat, rather than just continuing to take things out one at a time.

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#7 of 44 Old 06-28-2008, 05:07 PM - Thread Starter
 
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I really appreciate the input girls! It is really getting impossible to wean out her allergic foods now. I was thinking of just starting with an eliza or possibly alcat? It seemed like a good idea to not do a spt yet and I had to really convince my allergist that I didnt want my lo having that yet.
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#8 of 44 Old 06-28-2008, 08:41 PM
 
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We didn't do the SPT because it's not recommend for kids with eczema- since their skin is already so reactive, you have the potential of getting a lot of false positives (the skin will swell and get red when you poke it, whether there's an allergen there or not.)
Ahhh. Now I remember why the SPT is not recommended for us: DD1's primary symptom as a toddler (and currently) is bloody, scabby eczema. Right.

Our ELISAs (for both DD1 & myself) came back totally negative. Well, mine came back *slightly* allergic to sesame. However, I am 100% for sure, resulting in past hospitalization allergic to cashews and it didn't even register. *shrug* So, I don't put much stock in the helpfulness of the ELISA in our cases. DD1 has responded very poorly to food challenges for dairy, soy and green peas. Also, the RAST came back only mildly allergic to cats (which have been cat-free for over a year now).

Nessa, DD1 (5) DD2 (3) & expecting again in late February/early March!
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#9 of 44 Old 06-28-2008, 11:34 PM
 
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For us the SPT wasn't useful, and my allergist doesn't RAST except for 4 or 5 foods that test positive through SPT. We have had the best luck with crystal and muscle testing, and the APT (atopic patch test) completely reflected the crystal results- though it also gave us corn... which we hadn't figured out yet (we just knew the derivatives were off limits). HTH!

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#10 of 44 Old 06-29-2008, 09:05 AM - Thread Starter
 
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Originally Posted by mtn.mama View Post
For us the SPT wasn't useful, and my allergist doesn't RAST except for 4 or 5 foods that test positive through SPT. We have had the best luck with crystal and muscle testing, and the APT (atopic patch test) completely reflected the crystal results- though it also gave us corn... which we hadn't figured out yet (we just knew the derivatives were off limits). HTH!
do you mind explaining a bit how the crystal and muscle tests both work. did you buy the crystals yourself or did you take your lo to someone? what is it that makes them work? ( I didnt know anything about them so I was trying to look up info on them per your recommendation. is it the dowsing crystals you mean?)

thank you so much for the input
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#11 of 44 Old 06-29-2008, 11:20 AM
 
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That ALCAT test says it's 85% accurate as compared to double-blind placebo-controlled studies. That being said, I have found one false-negative on each of my kids' results. I guess I'm not finding out false positives because I'm too chicken to try those. My DD has been off of a ton of foods for about 18 months and I haven't wanted to try things that I knew she reacted to because it took so long to get each thing out of her system. Now, in the last two weeks, she's tried lots of new foods (that they said were safe for her) and she's been fine. It's been wonderful!! And they both showed intolerance to gluten/gliadin which I thought they could have, but I'm now eliminating under the assumption that maybe that's why we haven't gotten total healing.

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#12 of 44 Old 06-29-2008, 02:28 PM
 
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do you mind explaining a bit how the crystal and muscle tests both work. did you buy the crystals yourself or did you take your lo to someone? what is it that makes them work? ( I didnt know anything about them so I was trying to look up info on them per your recommendation. is it the dowsing crystals you mean?)

thank you so much for the input
I know the search function isn't working, so I just dug through my subscribed threads and found mtn.mama's thread about this. I bumped it up to the top of the Allergy forum, so it should be easy to find now.

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#13 of 44 Old 06-29-2008, 05:49 PM - Thread Starter
 
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you're awesome, thank you!
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#14 of 44 Old 06-30-2008, 12:39 AM
 
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ImmunoCAP-RAST and elimination/observation.

SPT was less sensitive than the RAST.
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#15 of 44 Old 06-30-2008, 09:14 PM - Thread Starter
 
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i called alcat today and they are not sure if they can do the test on ella because she is only 8.5 mos and they need to get a pediatric phlebotomist: they also want me to add a bunch of foods to my diet before they do the test because they are seriously concerned with the dietary restrictions.
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#16 of 44 Old 06-30-2008, 10:03 PM
 
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Well that's a bummer.

Who wants you to add foods to your diet- the ALCAT people?? Why do they care what you eat?

I don't know much about the ALCAT... do you have to eat the foods first before they will show up as positive on the test?

Have you looked into the ELISA?

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#17 of 44 Old 07-01-2008, 08:33 AM - Thread Starter
 
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yeah, the alcat people were really upset and are putting me in contact with their nutritionist today ( even if i dont decide to have the test done, they still wanted me to speak with this person for free). they do a whole nutritional overview and plan a rotation diet for you leaving out the foods your lo reacts to. Kjbrown92 recommended them to me and they gave me the same person to work with that she worked with.
You dont have to eat any of the bad foods. the test is a blood test and then they test the blood against the questionable foods ( they have panels from 50 foods to 150 with dyes and molds and stuff). this way you dont have to introduce anything into your lo:. it is about 85% effective.
I have looked into eliza, but this test seemed to be really interesting as well. the alcat tests for short term and long term reactions and does a huge list of foods ( if you pay an arm and a leg for it ).http://www.alcat.com/
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#18 of 44 Old 07-01-2008, 11:46 AM
 
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Actually that's very responsible of them to offer their nutritionist for free for you! Both my kids reacted to foods that we've never had. One of mine had a severe intolerance to okra, which I wouldn't touch with a ten-foot pole. I will tell you that the blood-taking was the hardest part. I took DD to our doctor, who poked her three times and said that her veins were too small (she's 3). Then I had to drive 45 minutes to another lab, where she tried both arms, severeal times, and then ended up getting it from the back of her hand (very slowly). DD was a trooper, that's for sure. But ALCAT isn't saying that they "can't" do it, right? They're just saying that you need to see a pediatric phleb, which you'd want anyway.

ALCAT tests for inflammation. They don't test for an IgE response at all. Just inflammation. So you could still have an anaphylactic response to a supposed "safe" food, because they're only testing for an inflammatory response (though that could be eczema, intestinal, etc.).

So far I've been introducing all sorts of food to DD, that I didn't think she could have. She's loving it (though she doesn't understand the rotation part, so she wants to have all the new foods all the time) and not reacting to any of the ones they deemed safe (I immediately took corn off the safe list because I know she gets eczema from that one, so there was a false negative).

Anyway, they sounded really knowledgeable and helpful to me. But yes, it was expensive. I'm still hoping that my insurance will cover part of it.

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#19 of 44 Old 07-01-2008, 01:45 PM
 
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I will tell you that the blood-taking was the hardest part. I took DD to our doctor, who poked her three times and said that her veins were too small (she's 3). Then I had to drive 45 minutes to another lab, where she tried both arms, severeal times, and then ended up getting it from the back of her hand (very slowly). DD was a trooper, that's for sure. But ALCAT isn't saying that they "can't" do it, right? They're just saying that you need to see a pediatric phleb, which you'd want anyway.
That was the hardest part for us too (for the ELISA). We went to 3 labs in one day... DD was a mess. So by the time someone actually got her blood, it was a 'traumatic' blood draw and the lab couldn't use the blood. : So we had to do it all over again.

ellasmama2007 - do you have a Children's Hospital near you? That's where we ended up (after 3 other labs couldn't do it), and they got DD's blood no problem- she didn't even cry. I will never go anywhere else again to get her blood drawn. And they drew it for free- and then just gave it to us so we could mail it in to the ELISA lab.

BTW- is insurance covering the ALCAT for you? Just curious... I wouldn't mind doing that one too, but no money to pay for it myself... but the ELISA was covered under our insurance (we just asked our ped to give a referral for it.)

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#20 of 44 Old 07-01-2008, 03:27 PM - Thread Starter
 
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I dont have a childrens hosp near me, but I would drive to the ends of the earth to find one and avoid a traumatic blood draw for my dd. you went to the childrens hosp and asked if they would draw lab work for you and they did? you dont have to be admitted or anything? did they use your insurance or just free as in totally free? i didnt know that you could do that, but i would be so thrilled if my nearest one would do that for us. I am so terrified of a horrible time with lab work. my lo is a chubby bunny and I know they would have a miserable time getting her veins.
The alcat peeps said they have a lot of luck with my insurance normally, but the tricky part is getting my ped or allergist to write for the test. it is considered alternative medicine and not main stream yet. I called my ped office and the nurse never heard of it and suggested i try my allergist first ( but i didnt talk to my ped yet). I have an appt for my dds allergist on 7/11 so I will ask her too.
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#21 of 44 Old 07-01-2008, 03:46 PM
 
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Well... the big Children's Hospital here in Seattle said they wouldn't do it unless they were processing the blood themselves, or through one of their labs. I was begging. I kept calling labs and asking if they had anyone that specialized in babies, and they all said, "yeah, we can do that." I'm like- no, you don't understand. I don't need someone that can do that, I need someone that does it on a daily basis so they know what they're doing!! We had already tried 3 places, DD had been poked in both arms numerous times with no luck... she was a mess, I was a mess... it was a bad day.

Then finally someone told me that we have another children's hospital here (in Tacoma), so I called them and they said no problem. They have a lab (run by another company, but it's in the actual hospital). We literally walked in, told the receptionist our name, sat down and waited for them to call us... we went in, got the blood draw, they handed it to us, we left. No insurance, nothing. I don't know how normal that is... but we ended up doing it twice at that hospital, and they never asked us for any information. Totally free.

I would say don't even bother asking your allergist... most don't believe in any kind of alternative testing. Our ped was willing to write the referral for the test- I just brought in all my research and said this is what I want to do, and this is the lab I want to do it through. He was very cooperative- I think partly because he felt bad that he's been SO little help through this struggle... he doesn't know anything about babies w/food allergies.

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#22 of 44 Old 07-01-2008, 03:52 PM - Thread Starter
 
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mine too! he's a doll except that he doesnt know a thing about this stuff. he thought my daughter was going to fail to thrive when i first told him about all of her allergies. how are doctors so clueless about this?
thanks for the advice. i cant believe that worked but i will certainly give it a try. it makes me sick just thinking about what's going to happen when she has this done!
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#23 of 44 Old 07-01-2008, 04:02 PM
 
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She will be ok. It does suck having it done, but if you can find someone who knows what they're doing, it shouldn't be too traumatic.

The first 3 labs wanted me to hold DD down on the table. I was like, NO WAY!! She will flip out! So they finally agreed to let me hold her... and then couldn't get her blood. The 3rd lab said that holding her wouldn't work because they needed the counter-pressure of the table behind her arm. I said ok, that makes sense, so I laid on the table with her. Then they did get her blood, but the nurse was holding her arm so tight it left a bruise (not to mention all the skin they took off by putting on that rubber tourniquet so many times and that ended up being the 'traumatic' blood draw and the lab couldn't use the blood (because in a traumatic blood draw the blood cells can burst or something...)

So when we finally made it to the children's hospital, it was such a different experience. They let DD just sit next to me on the table (she was comfortable there, otherwise I could have held her). They were really friendly, and obviously knew how to keep a baby's attention and keep them calm. They still couldn't get a vein in her arm, but didn't try to dig around for it. They used the butterfly on her hand with a REALLY tiny needle. So the blood draw took probably 10 minutes. And DD didn't even start to whine until about the last minute or so. She didn't even flinch when they put the needle in. AND they put the tourniquet on over her sleeve, so that it wouldn't totally pinch her skin. I was like WOW- you guys ROCK.

I will never take DD anywhere else to get her blood drawn. ever.

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#24 of 44 Old 07-01-2008, 04:20 PM
 
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We have had blood drawn about 15 times for DS so far, not counting surgery and NICU stay- last week, we had to finally resort to his scalp. I wear him in a ring sling and basically papoose him in as tightly as possible. We have had some success with his feet using this method, although I always use EMLA (didn't have his scalp prepped last week because they ASSURED me they could find a vein in his feet).

He is anemic and usually dehydrated somewhat, and he got my invisi-veins. When he had surgery last month, they put his IV in after he was under anesthesia- he came out of the OR with 14 IV sites, and they eventually had to use a radial artery. That hospital will never stick him again unless it's an emergency (they are the closest place with a ped unit).
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#25 of 44 Old 07-01-2008, 06:00 PM - Thread Starter
 
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changingseasons, it is so awesome that you've found them for your lo. It is just priceless to know that you can take her there and they know what they're doing!!
pree... I am so sorry that your poor little ds has been through all of that. it really blows my mind that that has happened to him. he was 33 weeks...was he in a level 3 nicu? i am just curious, i dont want to be nosey. Do they use a transilluminator when they stick him? I ordered one for my dd already so that i would have it to bring with us if she gets bloodwork ( is that pretentious?). that is really helpful for those little dehydrated veins. Do you have a Rx for the emla or is it otc?
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#26 of 44 Old 07-01-2008, 06:30 PM
 
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pree... I am so sorry that your poor little ds has been through all of that. it really blows my mind that that has happened to him. he was 33 weeks...was he in a level 3 nicu? i am just curious, i dont want to be nosey. Do they use a transilluminator when they stick him? I ordered one for my dd already so that i would have it to bring with us if she gets bloodwork ( is that pretentious?). that is really helpful for those little dehydrated veins. Do you have a Rx for the emla or is it otc?
not nosy at all! yes, he was in a level III NICU; we were fortunate he only stayed for 15 days. He wouldn't eat orally, and I basically had to beg the neo to let me take him home (I am a former PICU nurse, so I am totally ok with NG/OG tube feeding). He did have some respiratory distress for the first few days, as well as pretty severe jaundice, but after the first week he was just a feeder/grower. He grew like a champ for six months, right at the 50th percentile for term babies, so his recent FTT has been a horrible experience all around.

I definitely should get a transilluminator! I could never get a vein on him even if I tried- we had a team who did all our pediatric sticks at the hospital where I worked, specifically so no child would ever get stuck repeatedly because of an inexperienced nurse. (The down side is I never got very good at IV starts on infants!) This would be great, though, to have on hand.

I have a tube of EMLA I made his ped prescribe when I got him home from the NICU. The nurses at National Jewish in Denver think it's cute that I carry it with me, as they would never dream of sticking a kid without offering EMLA. (They have done DS's only painless blood draws because of this, too.)
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#27 of 44 Old 07-01-2008, 07:55 PM - Thread Starter
 
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wee site at 866-208-4016, option 3. $63 with shipping. tell them you're a nurse ( dont tell them it's for personal use)
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#28 of 44 Old 07-02-2008, 11:06 AM
 
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My regular old allopath doctor wrote a prescription for the ALCAT test. He said that he had called for another of his patient's who wanted the test, and spoke with the guy who developed the test, and it sounded really good. So I have the paperwork, I just have to send it in to insurance. I'm hoping they pay whatever the out-of-network amount is.

They had me hold DD on my lap when they drew her blood. ALCAT actually called around for me to find a lab, after my doctor's office struck out trying to draw the blood, then called me back when she found the lab, and gave me directions and everything. They were really good.

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#29 of 44 Old 07-02-2008, 11:59 AM - Thread Starter
 
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they seem really professional. i am kinda getting my hopes up ( just a little). Jean (from alcat) said she was going to call around and see if she could find a ped phlebotomist. I really hope she can find someone...

pree, how long did it take ds to take all of his bottles by mouth after you took him home ( it's awesome they let you do the ng feeds at home, it could have dragged on in the nicu forever if they made him stay!). is he still not taking solids again ( I know he was, but then stopped)?
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#30 of 44 Old 07-02-2008, 03:34 PM
 
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We use RAST and SPT in tandem. My kids issues are all IgE mediated, so ELISA doesn't do us much good.
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