ALCAT vs ELISA vs TED - Page 2 - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#31 of 47 Old 05-04-2009, 03:54 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Just back from the GI. My head is spinning. : This post probably won't be very coherent.

Basically, he didn't want to talk about food intolerances at all. He was surprised to hear that DD reacts definitively to soy AND milk and wondered what in the world I feed her. He avoided all my attempts to discuss additional intolerances and finally said he didn't think her growth (or lack thereof) is explained by the protein intolerance issue. And he did say, when I asked, that he does not order food intolerance tests - but he didn't explain why or why not. He said she's already been RAST tested (as in that's all the testing she needs) and he didn't really respond when I pointed out that her reactions are IgG, not IgE, and so wouldn't show up on RAST.

Ah well, moving on to the bigger issue - her growth. He did blood, urine, and stool tests - I guess anything he could think of that hasn't already been tested. I know he's looking at nutritional deficits like Vit D and Zinc, but I'm not sure what else he's looking for. The blood tests was horrible - they had to do 2 pokes and she struggled and screamed bloody murder. She bruised badly on the second and she almost couldn't get enough blood and had to do a 3rd, and her petechiae, which showed up randomly last week and had started to fade, is now much worse again on that arm. He said essentially he doesn't expect to find anything from the tests but wants to rule things out. Then he feels the next logical step is to do an endoscopy and colonoscopy - there are apparently a few things involving malabsorption issues that would come up on a scope (the names I can't recall) that are easily treated if you know about them. But again he thought the liklihood of it being something like that is low. So he's not adament about the scope.

She's still congested - though she's had a bad cold that is lingering. If that cleared maybe the chronic congestion would be better off the lactose, IDK. Her stools are a bit more solid off the lactose but still alternate between soft and formed. Her face rash is looking good the past few days, though.

One thing he did say to me is "Ya know, kids with Turner Syndrome are little." Of course I know this, but the endocrinologist feels she should be growing now and maybe slowing down her growth in a few years. But I can't help but wonder if she's just little because she has a genetic disorder that affects growth - we know that. We've known that since she was 3 days old. Maybe it goes no further than that???? But the Endo is supposed to be the TS expert on our team, so she should know. My friend said "how much money and time and stress do you feel like putting in to figuring out why your baby with a firmly diagnosed growth disorder isn't growing well?" Good point, I thought. On the other hand, if now is when she's supposed to be growing I don't want her to get way behind (although she already is so it's not about what I want ).

He also wants to see DS back, since I mentioned his anemia. DS was worked up for every possible explanation for the anemia when he was a toddler, so I imagine the next step would be to scope him too.

I'm thinking I need to jump ship, and swim to the alternative health one. Hard to do, since my insurance doesn't cover anything alternative and we don't have a lot of extra money, and we need to have a team of mainstream docs for DD b/c of her multiple health issues. So I can't jump ship altogether. I don't want to do another blood test for awhile now since this one was so horrible.

Sigh... Guess I'm back to an ED.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#32 of 47 Old 05-04-2009, 04:29 PM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,761
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
I know it seems like other people on this board have had trouble with GI docs. But the two I saw were really good about intolerances. For a GI to say that RAST tests everything and intolerances are rare is just absolutely ignorant to me. I feel badly that you didn't get a good GI doc!!

When I mentioned all the intolerances to DD2's GI doctor, she said "We could scope her, but I know what I would find, so why would you want to put her through that?"

I would think if your doctor who knows about TS, thinks that the little growth is bad even for TS, then yes, you should be following it up. I just don't understand doctors. Really. At least her face rash is better!


Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#33 of 47 Old 05-04-2009, 07:40 PM
 
WC_hapamama's Avatar
 
Join Date: Sep 2005
Location: California
Posts: 1,672
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
If her last round of RAST were done before age 2, you might want to have her retested after age 2... or have an allergist do SPT.
WC_hapamama is offline  
#34 of 47 Old 05-04-2009, 09:57 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by WC_hapamama View Post
If her last round of RAST were done before age 2, you might want to have her retested after age 2... or have an allergist do SPT.
Thanks Cheryl. Her RAST was done at 6 months, and her SPT was done at 11 months.

Kathy - Thanks for the support. I'm feeling a little insane at the moment, but I know most of the Mamas on this board have felt this way at some point, so thank goodness you all are here.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#35 of 47 Old 05-05-2009, 12:42 AM
 
WC_hapamama's Avatar
 
Join Date: Sep 2005
Location: California
Posts: 1,672
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by LaurieG View Post
Thanks Cheryl. Her RAST was done at 6 months, and her SPT was done at 11 months.
RASTs aren't terribly reliable to begin with, but even less reliable when done on children younger than age 2.
WC_hapamama is offline  
#36 of 47 Old 05-05-2009, 09:31 AM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by WC_hapamama View Post
RASTs aren't terribly reliable to begin with, but even less reliable when done on children younger than age 2.
Good thing to keep in mind in case we still haven't figured things out when she's 2. Thanks.


I'm going back to the original question again. Can we think through the theory behind each test to try to figure out which one would be more accurate. Here are my thoughts...

ELISA looks at IgG responses. E's rxs are mostly IgG I think - GI issues (reflux, tummy ache, diarrhea). But she also has some skin and congestion rxs. Would those be IgG mediated?

ALCAT looks at inflammation, which seems on the surface like it would pick up IgG and IgE and any other type of rxs. But from what I've read I'm less convinced of the science and reliability of ALCAT.

Kathy, why did you choose ALCAT? Anyone have other thoughts on this?

After a terrible night sleeping trying to work this through in my head today I'm thinking I'm going to ban all medical professionals from our life for the next 12 months, with the exception only of E's Endocrinologist who needs to keep an eye on her thyroid. I'm going to get one of the testing methods done (I think, I really can't stand the thought of putting her through another blood draw, but she needs her thyroid levels checked in a few weeks and maybe, though I doubt it, the phleb would be willing to do an extra vial for ALCAT testing. If not I don't know what I'll do). See if eliminating those foods helps clear her congestion, and watch her growth. I'm not convinced her growth is out of the rhelm of "normal" for a girl with TS based on conversations with other mom's of TS girls.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#37 of 47 Old 05-05-2009, 09:48 AM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,761
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Quote:
Originally Posted by LaurieG View Post
ALCAT looks at inflammation, which seems on the surface like it would pick up IgG and IgE and any other type of rxs. But from what I've read I'm less convinced of the science and reliability of ALCAT.

Kathy, why did you choose ALCAT? Anyone have other thoughts on this?
ALCAT does not pick up IgE. It does look for an inflammatory response to the food. I chose ALCAT because at the time I did a lot of reading on the various ones, and it seemed the best fit for us. It covered a lot of foods and I already knew that DD2 reacted to a lot of foods. I was using DS as a test case because I thought I knew all his foods (milk, soy, peas, green beans, white potatoes). So I only did 50 foods for him. And he came out positive to a lot of them. But I took him off of the positive foods, and his personality changed. He stopped being a whiney, tantrumy, crying, clinging 8 year old, and became a happy, patient, sweet 8 year old. I was amazed. So then I got him additional testing (so he could eat more) and got DD2 tested as well. There were a couple of false negatives on each. But for the most part, when we took all the "positive" ones out, there was a huge difference. I also talked to my pediatrician before the test (who wrote out a prescription in case that would help insurance cover it, which it didn't) and he said he'd talked to the creator of the test, because another patient wanted to do it. And it sounded like it was accurate. And he's pretty mainstream (but open minded). So that's my background. I ought to do it for me, but I just don't want to spend another $500 right now.

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#38 of 47 Old 05-05-2009, 10:53 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by kjbrown92 View Post
ALCAT does not pick up IgE. It does look for an inflammatory response to the food. I chose ALCAT because at the time I did a lot of reading on the various ones, and it seemed the best fit for us. It covered a lot of foods and I already knew that DD2 reacted to a lot of foods. I was using DS as a test case because I thought I knew all his foods (milk, soy, peas, green beans, white potatoes). So I only did 50 foods for him. And he came out positive to a lot of them. But I took him off of the positive foods, and his personality changed. He stopped being a whiney, tantrumy, crying, clinging 8 year old, and became a happy, patient, sweet 8 year old. I was amazed. So then I got him additional testing (so he could eat more) and got DD2 tested as well. There were a couple of false negatives on each. But for the most part, when we took all the "positive" ones out, there was a huge difference. I also talked to my pediatrician before the test (who wrote out a prescription in case that would help insurance cover it, which it didn't) and he said he'd talked to the creator of the test, because another patient wanted to do it. And it sounded like it was accurate. And he's pretty mainstream (but open minded). So that's my background. I ought to do it for me, but I just don't want to spend another $500 right now.
Kathy, every time you talk about your DS and the changes going off these foods made I get inspired to test all my kids. DS1 has such a challenging personality and I really wonder what would happen if I did the same. But it's a lot of money to spend for an experiment. Still - tempting.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#39 of 47 Old 05-06-2009, 09:57 AM
 
kjbrown92's Avatar
 
Join Date: Dec 2007
Location: CT
Posts: 10,761
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Quote:
Originally Posted by LaurieG View Post
Kathy, every time you talk about your DS and the changes going off these foods made I get inspired to test all my kids. DS1 has such a challenging personality and I really wonder what would happen if I did the same. But it's a lot of money to spend for an experiment. Still - tempting.
It was a lot of money. But personally, I don't think the healing could start until we got off all the foods AND did the healing measures. I know others here don't agree with that route. And SLEEP is worth it to me, and DD2 reacts to all of her triggers with night waking. You could call and ask about your insurance. They said that some are better than others.

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
kjbrown92 is offline  
#40 of 47 Old 05-06-2009, 12:58 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,802
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
DD's insurance did cover her ELISA (which is a good thing, since it was $2800!!), so you might check into that. I'm not sure if they would have covered ALCAT or not. hmm... I should check on that. It would be interesting to compare the two.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#41 of 47 Old 05-06-2009, 01:37 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by changingseasons View Post
DD's insurance did cover her ELISA (which is a good thing, since it was $2800!!), so you might check into that. I'm not sure if they would have covered ALCAT or not. hmm... I should check on that. It would be interesting to compare the two.
My insurance won't cover either for sure unless I can find a doctor to order it, which to this point (5 specialists in) I haven't found.

But, there's hope on the horizon. I just found an ND who works in a practice with an MD and because of state law everything she does is "supervised" by the MD (meaning if she orders something it would be like him ordering it insurance wise). Even better, the clinic is an In-Network provider with my insurance. AND the ND apparently has a particular interest in pediatrics, allergies, and gastrointestinal disorders. I made an appt for DD for Monday. And if things go well I plan to take DS there and not even bother with the f/u appt with the GI for his chronic anemia. Very cautiously :, and keeping my fingers crossed.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#42 of 47 Old 05-06-2009, 02:37 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
BTW - CS, was the ELISA test you did the standard test or did you do one of the premium kinds of test? My insurance will only cover 1/2 of the cost of an out-of-network lab, which all of the options are. So even if insurance does cover it $1400 ain't happenin'. If that's a standard cost for ELISA I'm thinking we'll be going ALCAT.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#43 of 47 Old 05-06-2009, 02:51 PM
 
changingseasons's Avatar
 
Join Date: Mar 2008
Location: Seattle
Posts: 8,802
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by LaurieG View Post
BTW - CS, was the ELISA test you did the standard test or did you do one of the premium kinds of test? My insurance will only cover 1/2 of the cost of an out-of-network lab, which all of the options are. So even if insurance does cover it $1400 ain't happenin'. If that's a standard cost for ELISA I'm thinking we'll be going ALCAT.
No, that's not the standard at all. I just decided to go for the most expensive test ever. My ELISA (through Meridian Labs) on the other hand was $125 (for the basic food panel; full panel would have been $250.)

DD's (the expensive one) was through Sage Labs- they are out of network, but they are the ONLY lab that does that particular type of ELISA, so you can often file an appeal with your insurance company to cover them as in network. Of course you'll still probably have a big chunk to pay since it's such an expensive test.

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
changingseasons is offline  
#44 of 47 Old 05-06-2009, 04:47 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by changingseasons View Post
No, that's not the standard at all. I just decided to go for the most expensive test ever. My ELISA (through Meridian Labs) on the other hand was $125 (for the basic food panel; full panel would have been $250.)

DD's (the expensive one) was through Sage Labs- they are out of network, but they are the ONLY lab that does that particular type of ELISA, so you can often file an appeal with your insurance company to cover them as in network. Of course you'll still probably have a big chunk to pay since it's such an expensive test.
Okay, so this brings up the point of the various ELISA tests. So you can get ELISA tested through Sage Labs, Meridian Labs, US Bio Tech. Those are the only ones I know of. But I'm not clear on the differences between them, or why you might choose one over the other specifically. Anyone want to comment?

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#45 of 47 Old 05-06-2009, 06:26 PM
 
chlobo's Avatar
 
Join Date: Jan 2004
Posts: 4,741
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by LaurieG View Post

Ah well, moving on to the bigger issue - her growth. He did blood, urine, and stool tests - I guess anything he could think of that hasn't already been tested. I know he's looking at nutritional deficits like Vit D and Zinc, but I'm not sure what else he's looking for. The blood tests was horrible - they had to do 2 pokes and she struggled and screamed bloody murder. She bruised badly on the second and she almost couldn't get enough blood and had to do a 3rd, and her petechiae, which showed up randomly last week and had started to fade, is now much worse again on that arm. He said essentially he doesn't expect to find anything from the tests but wants to rule things out. Then he feels the next logical step is to do an endoscopy and colonoscopy - there are apparently a few things involving malabsorption issues that would come up on a scope (the names I can't recall) that are easily treated if you know about them. But again he thought the liklihood of it being something like that is low. So he's not adament about the scope.
Wow, this part sounds like my GI visit for my 5 yr old DD. She's not small but has other issues. After doing *only* blood tests he now chomping at the bit to do an endo & a colonoscopy. And he talked about possibly finding inflammation (you think?) and treating her with anti-inflammatories for 6-12 months or maybe even life. It was so discouraging. I so feel your pain.

It seems like all they want to do is fish. Well I can tell you what's going on. Inflammation, potential malabsorption (although she's not small). Duh. But she's not suffering from a lack of anti-inflammatories, I can tell you that.

My son is supposed to see this same GI in June. I'm thinking it will be more of the same. HE is small.

I am seeing an ND/classical homeopath tomorrow for me & DS. I'll let you know how it goes and maybe it could be something for you to consider.

Mom to DMI & Silly Apple
chlobo is offline  
#46 of 47 Old 05-06-2009, 10:24 PM - Thread Starter
 
AquariusHome's Avatar
 
Join Date: Aug 2007
Posts: 1,235
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by chlobo View Post
Wow, this part sounds like my GI visit for my 5 yr old DD. She's not small but has other issues. After doing *only* blood tests he now chomping at the bit to do an endo & a colonoscopy. And he talked about possibly finding inflammation (you think?) and treating her with anti-inflammatories for 6-12 months or maybe even life. It was so discouraging. I so feel your pain.

It seems like all they want to do is fish. Well I can tell you what's going on. Inflammation, potential malabsorption (although she's not small). Duh. But she's not suffering from a lack of anti-inflammatories, I can tell you that.

My son is supposed to see this same GI in June. I'm thinking it will be more of the same. HE is small.

I am seeing an ND/classical homeopath tomorrow for me & DS. I'll let you know how it goes and maybe it could be something for you to consider.
Definitely post an update. I can barely wait until our ND appt Monday. I'm so done with allopathic medicine. I can't even stand to think about how many unneccessary invasive procedues I've subjected my baby to in her short life.

Good luck tomorrow!

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
AquariusHome is offline  
#47 of 47 Old 07-17-2014, 12:29 PM
 
Join Date: Jul 2014
Posts: 2
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Immuno Labs is using the ELISA method

Immuno Laboratories is the only lab with three independent studies published in peer review journals that validate the clinical relevance of outr testing. We are CLIA certified. We use the ELISA method and conduct intra-lab testing each week to ensure our 100% reproducibility. We also have 37 point quality control process to ensure consistency and reliability. Our library of testimonials exceeds more than 400 physician and patient testimonials attributing their health improvements to the Bloodprint® testing and support provided by Immuno Labs. These testimonials can be seen at www.immunolabs.com.
Immuno Laboratories is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off