New to the diet
Let me introduce myself and my family. I’m Alice. My husband is Bill, wehave two children a daughter, nine 1/2 years old and a son 7 1/2 years old.
Our son, AJ was diagnosed PDD-NOS just shy of age 3. He went from at 18months being a little scientist to at 27 months being a child who would nolonger respond to his name, didn’t want to be touched and lost all hislanguage except for the word “milk.”
We’ve been fortunate in that AJ has responded well to just about everyintervention we have tried. He now only lags in language about 18 months.We recently identified CAPD (central auditory processing disorder) as one ofhis major issues.
I could go on and on, but I’ll stop. Recently we decided to test for glutenand casein peptides in the urine with Dr Shaw’s laboratory. We also did theorganic acid test to look at yeast and bacteria issues. No big surpriseshere he tested way high (14 X normal) for casein and high (3X normal) forgluten peptides. Since we’d no more give him poppy flowers (the REAL ones)to eat, we are starting the gf/cf diet.
I think about all the indicators that something was amiss, mostly the nightshe’d wake up and crawl in bed with us and be obviously running a fever, butby morning it was all clear, the allergy cheeks, etc and kick myself a bitthat we didn’t pursue the diet sooner.
Much of these kinds of signs went away years ago. I also remind myself thatinformation on why the gf/cf diet worked was not available as readily a fewyears ago (at least when I was doing my read everything I can get my handson routine)- so silly me chalked up the diet to a fad that might work for afew kids but all in all was not based on any scientific rationale. Now thatwe have some evidence that there is something awry in his system that may beaffecting his brain, it makes sense to at least try the diet.
So, we’ve been on it since Friday. I’m learning how to cook all over again,I cleared my pantries of the foods he can’t have, limiting a few treats formy daughter and husband to one shelf in one cabinet that will not beconsummed in his presence.
Okay, I know in Dr Shaw’s book they recommend that you go after the yeastissue first, get rid of apples and grapes and other foods, start nystatin,go to more eliminations, then go to the gf/cf phase. This makes sense toheal up the holes. But I’m stubborn and want to try the gf/cf diet first,see the effects and if they aren’t satisfactory pursue the yeast protocol.I know that with a list this big there have to be other parents out therewho are trying this approach, so I have questions:
1. How long do you go gf/cf before you see effects? Keep in mind my son’sdigestion seems to be doing just fine, no diareaha, no apple cheeks fromallergies (they were only from age 2-4, or when he has a cold), no cramps,etc) so I’m looking for the behavioral changes, mostly attention span andlanguage (conversations). I don’t know what to be on the lookout for, orhow long it might take- I think I’ve seen a few subtle changes in just thisshort timeframe and we are going to get a test tomarrow with reintroductionwith pizza (sorry, its the end of summer school and I PROMISED him pizza atthe local overstimulate yourself with video games place called Chuck ECheese before I knew about the peptide test….) I guess I’m looking forencouragement- how early on the diet do you see effects, what is a goodwaiting period before taking the next step (2 months? 6 months?…)
2. Is there a low casein margarine? I mean besides Spectrum. One in thegrocery store. Has any one looked into which national brand has the leastcasein? My son does not use a lot of margarine, I use some in cooking. Andwhat about butter? I read somewhere since its all fat it doesn’t havecasein, but I’ve also seen it listed as a no-no, so what gives? Can you usebutter or not?
3. What about going to school? I know he’ll have to pack lunch. I’mtrying to get him used to the diet and then explain to him what he can andcan’t eat, I don’t know how well he’ll understand. How have other parentshandled this? How coopertive has the schools been (keep in mind, I’vegotten the impression at times that they don’t think his “Handicap” is thatsevere, that he’s got more of an attention or willingness issue (bulls..t)(this is due to his inconsistency…)- on the other hand they also tell mehe’s not ready for prime time (full inclusion)) Will I need to put thingsin his IEP to enforce his diet? How do you handle class parties? Food issuch a large part of our social life, how do you tell a 7 year old he can’thave cupcakes, or do you let him have one once a week?
This post tagged as: allergy gluten, allergies to gluten, gluten food allergy
Jerry Mccurtis said,
Wrote on April 18, 2007 @ 7:32 pm
I think that you can’t do the diet part way. Ex: “low casein margarine”You need casein free. Also, giving cupcakes or other foods occasionallywill not work. However, you can make a good substitute. Our daughter willbe starting kindergarten this fall. We will have things that are gluten andcasein free available there for her.
I believe that all those involved in research on this believe that the diethas to be 100 %/
Laurence Selva said,
Wrote on April 20, 2007 @ 6:02 am
The only way to have real success on the diet is to go 100% . I wouldn’tgive an alocoholic even one beer. It’s sabotage. I know, I’ve tried it.
For margarine, I recommend Shedd’s Willow Run. For cupcakes, I can emailyou a recipe if you want. Otherwise, I would say, “No.” If your childreacts to gluten and casein, giving it to him or her is the same as givingthem poison.
We saw changes immediately on the diet- but I know this is different formany people. Good luck with your pizza test. It might not tell you much if1) you haven’t been doing the diet for a few months, the longer the betterand 2) if you haven’t been 100% on the diet.
From the test results you’ve shared, it sounds like your son should havegood success on the diet.
Emil Yoseph said,
Wrote on April 20, 2007 @ 10:49 pm
I would like to have a copy of this recipe - my son is having trouble inschool when they have parties with “cake” and he can’t participate. I wouldlike to make some cupcakes that they can keep in the freezer at school andgive him one when there is a party.
Tad Bend said,
Wrote on April 22, 2007 @ 3:45 am
I saw the comments about the poll and the addition of the pitocin question.I just want to make the comment that my autistic son is a fraternal twin(his twin sister is not) and they were both exposed to the same things inutero.
Brittani Delude said,
Wrote on April 22, 2007 @ 4:16 pm
okay I admit it is 4am, I went to bed at 11pm and up at 2 since the littleone wanted to eat, of course my mind wouldn’t let me sleep so I started tosurf, not really considering the quality of sites I was on (I usually stickto medical sites) which is not surprising to me since the medical docs arereally making me frustrated. SO to avoid rambling anymore, I came across acomment
6. When the intestinal lining is inflamed, bacteria and yeasts are able totranslocate. This means that they are able to pass from the gut lumen orcavity, into the bloodstream and set up infection anywhere else in the body.
I also so a comment that candida infections could be in the brain.
Does anyone have any links to medical info or research on this?? Or is thisone of those “things” that is untrue??
Elodia Rotering said,
Wrote on April 23, 2007 @ 10:33 am
Try this web resource for yeast (candida) info:
http://members.aol.com/docdarren/med/candida.html
Sixta Flockerzi said,
Wrote on April 23, 2007 @ 10:52 pm
< < This poll doesn't account for mothers who were not exposed to any of the above. I think that is equally important, since none of these applied to me and my son is still autistic. >>very good point… i should have included a non e of the above choice…sorry…ill think of something
Waldo Penning said,
Wrote on April 25, 2007 @ 10:36 pm
< < I saw the comments about the poll and the addition of the pitocin question. I just want to make the comment that my autistic son is a fraternal twin (his twin sister is not) and they were both exposed to the same things in utero. >>my twins are fraternal as well and they are both autistic, so who knows!there has to be some common link here…it keeps me awake at nightsometimes… I just feel strongly that there is something in our environmentthat is causing this since the rise in autism is so great in the past 15years…not exactly a brilliant revalation on my p art…just one of thebigger things on my mind right at this moment concerning my kids and howthis all happened
Dierdre Mcniell said,
Wrote on April 27, 2007 @ 6:44 pm
Every little bit helps. When we started the diet (Feb 00) we started w/just a couple of things. That alone made a difference. We continued from there. It’s anoverwhelming task. Feel GOOD about what you are doing to help your child,and if you are at all like me, YOU will be hungry to see more improvement,and have the inspiration to continue on!!
Pok Bozovich said,
Wrote on April 29, 2007 @ 2:47 am
I know you already got your answer, but even though I don’t know what theanswer is, I do know what is a very good Vanilla Cake mix. The AuthenticFoods makes a very good cake mix. It’s in the health food stores and if yourHF store doesn’t have it, you can either order it on line (by the way theymake a very good Pancake and Baking Mix–it makes good muffins). The website is http://www.authenticfoods.com. Or you can ask your local HF store to orderand I’m sure they’ll stock it for you (this way you don’t have to pay forshipping–even though I’m sure they jack up the price!) I make a frostingfrom Lisa Lewis Book “Special Diets for Special Kids”. It’s really deliciousand it solved my problem for a special treat. I don’t know if your son is ona very strick diet–being your new to the diet. If he is, then he can’t havesugar which this mix does have sugar in it. The ingredient is called”concentrated cane juice” which is sugar in disguise. I spoke to the ownerof Authentic Foods, so unfortunately I was giving my son sugar and didn’teven know it! Anyway, fortunately he didn’t have a bad reaction which wasgreat. If your son isn’t up to sugar yet…keep this mix in mind for thefuture!
Enjoy, and hang in there! Scott used to be on Prozac and then Zoloft beforethe diet. Now he’s med free and doing much better with eye-contact,communicating, talking…
Kris Cuffie said,
Wrote on April 30, 2007 @ 11:46 pm
Welcome to the GFCF world! I know it seems overwhelming, but it does geteasier…Does your son like pizza? You can make your own (I know you are toobusy to make your own stuff–I can relate) I work full time and have twochildren–one of which is autistic (so you know what that means). SometimesI make muffins instead of dinner and we eat anything for dinner….Pot luck.The diet is so important because once you start seeing results, it makes itall worth it and you won’t dream of going off it! You’ll see the little boyyou used to know long ago…I don’t know how old your son is, (I’m assuminghe’s a he and not a she!) but my son is 6, and I remember him very well(obviously) before he ever showed any signs of being autistic. This is theclosest I’ve ever seen him behave to the way he was when he was a baby. Hestill stims a lot, but every other way he has shown improvement. Plus I hopeyou’re going to a DAN! dr. They have a whole protocol they follow (it’s notjust the diet!). So I’m hoping for even more improvement!
Hang in there and let me know any questions you may have…I’ve been therenot that long ago and I know what your going through. It seems like the dietfrom HELL!
Ezequiel Curtice said,
Wrote on May 2, 2007 @ 6:38 am
All barley is a no-no. There is Pacific milk substitutes in rice andsoy. Also I bought Pro-Bio-Gold from Kirkmans for Niks yeast problem. Theyalso carry Pro-Culture-Gold. Have you had any testing done on your child???My test results came back with Nik needing more than 1 good bacteria neededso thats why I chose Pro-Bio-Gold. Check Kirkmans web-sitewww.kirkmanlabs.com, click on their hypoalergenic box and then click on theproducts you want to read about.
Latosha Wahlstrom said,
Wrote on May 2, 2007 @ 8:07 pm
Yes, it seems that after removing dairy some people do temporarily haveconstipation. My daighter did for a couple weeks after and It also seemssomewhat common to have diarrhea for a week or two after for some–thastwould be my son. The body must need to rebalance itself. I dont think youmight notice slip ups as much until you are off it for a few weeks atleast.However, I must ssay that we had my son almost casein free when I gave himhis last pizza and ice cream one night. He was a space cadet for a fullweekend. Some kids only show their sensitivity though after a few months onthe diet. Once the system clears, it is often very clear that all along thebody was being affected by the food. Good luck with the diet.
Milford Cavagna said,
Wrote on May 4, 2007 @ 6:55 am
When my DD gets any casein, she acts as though she’s high on drugs. Ithappens within 20-30 minutes.
Margert Treib said,
Wrote on May 5, 2007 @ 4:00 pm
My son also regressed terribly. Prior to the diet, my son had language. Itwas mostly scripting, echo and what he read though. Within about one week ofstarting the diet, he lost all language. He was so spaced out, he walkedstraight off a 6 ft high jungle gym at the playground and broke his arm.The reason this diet works is because asd children are getting an opiateeffect from gluten and casien. He is going through withdrawal just like anopium addict and it’s a good sign. It sounds like you are seeing the worseof the withdrawal right now and it shouldn’t last too much longer. Thismonth’s Sully’s Living Without magazine has an article about the diet anddiscusses withdrawal. Your son will respond well to the diet. So, hang inthere and congratulations! Good things will come from this.
Applegate lunch meats are gfcf and preservative free. I think they also havesausages. I sometimes buy the Johnsonville Sausages (plain).
Chantay Unick said,
Wrote on May 6, 2007 @ 3:23 am
I buy Boar’s Head lunch meat. We think it’s really good!
Ernestine Siglin said,
Wrote on May 6, 2007 @ 5:15 pm
The peptide tests are not 100% accurate (which has been discussed onthis board heavily). At best they can only tell you that you need tostart the diet. You already know that the diet has helped yourdaughter, so why take her off the diet to take a test which will onlytell you to put her on the diet?!
Rosalba Zakes said,
Wrote on May 7, 2007 @ 7:08 pm
Congratulations on starting the diet. I also agree that the diethas to be 100%. But the payoffs are amazing. My son was 27mos. whenwe started the diet, and at the time he had about 100 words, mostlylabeling and a few to name some of his wants. He used tosay “bottle”, and by within three days, he was saying “I want mybottle!” Granted, he says it both now & his pronunciation isn’tperfect, it’s still amazing. We cut out everything though, we wentdown to rice milk, potatoes, & brown rice for a few weeks, just toeliminate everything. Now he eats a pretty wide diet (under thecircumstances), I feel blessed that he can tolerate soy and cornwhich makes such a difference. Knowing that the gluten and caseinare attacking our kids central nervous system, I think it is reallyimportant to 100%. Good luck, it seems more overwhelming than itreally is, it just takes time
Rosy Gruman said,
Wrote on May 8, 2007 @ 12:56 am
My experience has been to try and stay away from the Rice Milk (crosscontamination)…Barley is a no-no, regardless of magnitutude…I found that “Vance’s DariEase” is great. It is white, likemilk…comes in a powder…cost the same as buying rice milk orregular milk..has a great taste and is fortifide with vitamins…
it is sold at the Gluten Free Mall & the Gluten Free Pantry.