just did the ALCAT -- results are in!

[riomidwife]

after much deliberation (uh, over a year's worth!) I decided to go ahead and do the ALCAT for my son, 3, who has been GFCF for two years, and various other "frees" during that time. we've still been struggling with some remaining signs and symptoms that we have not been able to sort out despite all our diet and supplement compulsions. i'm hoping that the results will be helpful. we'll see! i chose to do the 200 food panel + enviro chemicals + mold + food additives/colors.

[kjbrown92]

Just remember that you're supposed to have been exposed to the food within 6 months for it to read accurately (so if milk and gluten come back okay, it doesn't necessarily mean they're safe). My DS had been off milk and soy for a couple of years before his test. He still came back severe to milk but only mild to soy. We got the rotation diet with ours, and did it for 6 months, then started adding back in yellows/milds. We stopped rotating at about a year. It's been 2.5 years. Anything that's been added in the last year is still is rotated. We still haven't gotten everything back yet. But DD2 had about 30-40 foods to avoid at the beginning and she's down to 5 foods avoiding. DS also had about 30-40 foods to avoid, but he's been slower at getting them back. He's still avoiding more like 15 foods. Also for some of ours, if it was a mild, but they'd have a ton of it that day, they'd react much worse. So when we add things back in, we also put a limit on how much they can have in one day of that food. I hope you get some good information!!

[riomidwife]

Thanks for your input Kathy! I became a ALCAT provider so that I could test my family at a more reasonable price, and if the results and subsequent dietary changes lead to a dramatic improvement in symptoms then I will offer the test to my midwifery clients. My rep with the company said that ideally food would be consumed with three months before testing,  but that the test can provide a sense of how one's body would react to food that had never been consumed. To be honest I am a little skeptical of the science (however I am way for skeptical of IgG testing) but I am willing to take this chance and see what we come up with.

Kathy, do you attribute anything else to improvement in your children's symptoms or do you think it was strictly the rotation diet and elimination of the highest reactive foods?

[kjbrown92]

My son made leaps and bounds improvements just going off the foods. We did a Genova stool test about a year and a half after that because he was still pooping only once every 3-4 days. And then he went on certain probiotics and enzymes for that. And he's improved a lot from that as well. Last May, we found out he has chronic lyme (from me) and that's probably why he has the food intolerances. For my daughter, we didn't do anything except eliminate the foods, and she has gotten a lot of them back. Last May, we tested her too, and yes, she has lyme as well (wasn't that sweet of me, giving it to them? yeah, not so much). She's been on an herbal formula, which I think has helped her get more foods back. My allopath (extremely mainstream) doctor said he talked to the creator of ALCAT, and he was confident that the science behind it was good. He had another patient who wanted to do it, so he said he researched it for the patient, and he was impressed. Considering the reputation of this doctor (consistently rated one of the top doctors in the state) I was impressed.

[riomidwife]

Ok, got our results and I am so glad we did this......There were a few surprises (like lime, hops, and spinach and beets) a number of confirmations on what we already suspected (apples, oranges, bananas, corn). He tested strongly for whey, but not casein, which was interesting, and for gliadin but not gluten. He has not dairy or gluten for a few years although it is possible some snuk in somewhere. He also showed a sever reaction to a few molds and other chemicals including formaldehyde, which makes me even more satisfied with our decision not to vaccinate as a baby since some are manufactured with formaldehyde.

I feel really hopeful about this. I am also grateful for the inclusion of the rotation diet with the results. The idea being that, if you overcompensate by relying too much on the food you are least or not sensitive to, you can provoke sensitivities to those foods. We're trying to was into it -- my DS is 3.5 so trying to get him to understand food rotation is like trying to, i don't know what! It's difficult! But after a week of talking about "cherry days" and "rice days" and "bean days" he's starring to get it.

I'm already seeing improvement in his behavior symptoms. He's been able to make it to the evening without totally deterioration and being super tired. His face has lost a lot of its puffiness and I feel like I am starting to "see" my child for the first time in a long time. That, of course, is priceless. We'll see how all this affects his skin stuff, red face, bumps, and so on. Red face seems to be improving, at least it has come and gone quickly rather than lingering all day.

I have to sit down this weekend and do some meal planning around the rotation diet and that is going to be a pain, but I suspect that after I get the meal plan in place it will be a lot easier just relying on the schedule. As it is now planning and preparing our meals is a significant amount of work. Also this weekend I'll be attempting some breakfast muffins in accordance with the rotation so that the guys can just pull a "day one" muffin out of the bag and know it's good to go.

So Kathy, it sounds like you removed all yellows rather than rotating them?

[kjbrown92]

For the first 6 months, we rotated all greens, then added the yellows back in that I thought were going to be okay. It was pretty clear which ones weren't okay. For us, if DS had a lot of a yellow, it would be a worse reaction, or if he had a bunch of yellows on one day, it would be a cumulative effect, so portion control of the yellows on those days was instituted. On the green foods, he could have as much as he wanted to on those days. We're over 2.5 years into it, and when my 10yo asks what day it is, I know he's not talking about Monday or Tuesday, it's "is it rice day or carrot day?" At this point we only rotate things that have been added in the last year-ish. Everything else is okay in moderation on any day.

My DS also reacted to gliadin and not gluten. Just remember if he hasn't had milk in a long time, the results of whey vs. casein vs. milk might not be as accurate as they could be, unless you've done a trial recently.

It was very difficult at first, but it got easier. I actually marked my recipe cards with which day it was on the rotation (and which child it was safe for, since my two kids were opposite on a lot of things). If you need any help figuring out recipes let me know. We had millet pancakes on one day and buckwheat pancakes on another. And we froze a lot of things so we wouldn't have to wait 4 days for leftovers.

[riomidwife]

Wow Kathy. You are DEDICATED. What were your son's reactions to the yellows? How soon after starting on the RT did you see improvement in his symptoms?

Figuring out how to organize the rotation diet and recipes feels daunting. I would love your millet and buckwheat pancake recipes.

[kjbrown92]

Originally Posted by riomidwife 

Wow Kathy. You are DEDICATED. What were your son's reactions to the yellows? How soon after starting on the RT did you see improvement in his symptoms?

Figuring out how to organize the rotation diet and recipes feels daunting. I would love your millet and buckwheat pancake recipes.

He had 3 days of withdrawal from the gluten, and then it was like he was a new kid. He started falling asleep within 10 minutes at night (instead of 1-2 hours). He stopped being so clingy. Hardly any tantrums. Very even-keeled. If he had too much of any of the yellows or a combination of too many yellows, then he'd get tantrums, become clingy again, etc. Also, eggs are on his mild/yellow list (both white and yolk). It's been over 2.5 years and he still can't have them. His symptoms to those actually got worse - went from crying the next day (uncontrollably sobbing over nothing, to a trial a year or so later where he got a stomachache, the last time was a year ago, and he vomited within 20 minutes of having a cake with eggs in it).

White potato was a green that he still reacts to. I test him about once a year on those. Last time was in the spring of last year. 5 potato chips = 3 nights of screaming all night long and wetting the bed. Corn was a green that became an orange after I let him have it every day thinking it was benign. He got stomachaches day after day. We can all now tolerate xanthan gum and citric acid though. Carrot was a yellow, but I let him have those every day and he started getting stomachaches from those. I pulled them for a year and a half, and now they're on strict rotation, and he's doing okay with them.  Almond was also a yellow, where after having them too often (I was using almond flour and almond milk in my bread) they gave him bad stomachaches, and I had to pull those completely too. So he can have a lot of the yellows a lot of the time, but there's some that he still can't have.

The millet and buckwheat pancakes are on my blog. The buckwheat one has a chocolate version as well. And I modified the buckwheat ones to work in a waffle cone maker too (we just like big crispy cookies, we rarely roll them into cone shapes).
 

[Panserbjorne]

wishing you the best of luck.  this is probably my favorite test out there currently, and I've used most all of them at some point or another.  I think it's heads and tails above ELISA.  I'll be excited to hear your progress. 

[riomidwife]

kathy -- thank you for sharing so much helpful information. i'll take a look at your site! and what, if anything, do you attribute the false-negatives to? i just assume that the body is reacting on  a level other than what the test is measuring (white blood cell response). and did you change any of the items/days? i know they say they lump them by family, but we have some days where i can't figure out any association between the grains and it would be sooo much easier to do a little switch.

panserbjorne, what was your experience with the ALCAT test?

Edited by riomidwife - 3/3/11 at 3:45pm

[kjbrown92]

Well for false negatives, DS had been off potatoes for a year and a half already before the test, so that's what I attribute that one to. And DD2 was off also have corn for a year and a half before the test. I don't know that any test can be 100% accurate so out of 150-200 foods having 1-2 fals negatives doesn't seem that bad.

I did switch a couple food families on the rotation, and I did use some things on all days (like baking powder, sea salt, and vanilla, which I made myself). I actually had to rotate black pepper, which was a pain in the butt.

[Panserbjorne]

Originally Posted by riomidwife 

panserbjorne, what was your experience with the ALCAT test?

Kathy IS amazing and a total inspiration to everyone who knows her!  Her dedication is phenomenal!

ALCAT is the test we use most often in our clinic when people want a blood test.  Having used several (as has the doc I practice with) we much prefer this one.  And I agree with Kathy-there is no test anywhere at any time that is 100%. 

[riomidwife]

yah, i don't think any test will provide 100% accuracy either, at least in real life application. The ALCAT people say that because they are looking for a molecular reaction, if it's there -- it's there. In that sense they do not consider any positives could be false-positives, at least in vitro. Whether or not a person actually reacts to that positive in an identifiable way, well, perhaps not.

Kathy, did you just change the days around, or did you swap food within the days?

[kjbrown92]

I just switched a couple of food families on the days, not whole days. I was having a problem with day 2, so I swapped a couple on there because of the protein issue.