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"Hidden" Food Allergies -- I just don't get it!

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"Hidden" Food Allergies -- I just don't get it!

Posted by KMD on August 31, 2000 at 22:32:01:

Hi all,

I'm having a problem with the concept of hidden food allergies. My older son has a severe life-threatening allergy to peanuts. Any exposure could cause immediate anaphylactic shock. This was discovered at a VERY early age, about 9 years ago. Because of living with this, I have always had great respect for what a true food allergy can do to a person. When you have a true food allergy, it is the PROTEIN that causes the histamine reaction. Does corn or tomato even have protein in it?

My brother will have the same sort of (severe) reaction to fish and bee stings, for example. I knew a girl who was so allergic to milk that it was as severe as my son's peanut allergy. She would get hives if it got on her skin (just as my son will if peanut butter touches his) and if she got any traces of milk protein in her mouth she had to use the Epi-Pen (ditto).

So I guess there is a part of me that is "offended" (for lack of a better word) that everyone is talking about hidden food allergies, because I don't understand how such a thing can be a TRUE ALLERGY at all. I am afraid that the population is going to eventually think that my son's allergy is "no big deal" because they too, have these supposed food allergies. For my family, FOOD ALLERGY = DIAL 911!!

So, what are we talking about here? I know we are talking about possible ongoing symptoms that a person may have. A "reaction" of some sort perhaps, but a subtle one and certainly NOT life-threatening. I'm thinking we are talking about LGS and the leakage of improperly digested proteins. Is THAT what everyone is calling "hidden" food allergies? Somebody please clarify this issue for me!




Re: "Hidden" Food Allergies -- I just don't get it!

Posted by
Johnelle on August 31, 2000 at 23:01:59:

In Reply to: "Hidden" Food Allergies -- I just don't get it! posted by KMD on August 31, 2000 at 22:32:01:

KMD

I don't know the answers to your questions, but I am wondering, are you familiar with NAET therapy? It is a technique based on traditional Chinese medicine that reverses allergies to everything from food to wood to wasp stings. I have been receiving NAET therapy for my food allergies, and it is working. You might check out the website (NAET.com) since you have so much at stake. I used to not be able to tolerate tap water, for instance, and when I was treated with NAET, I can now tolerate it without any effect.

Johnelle



Re: "Hidden" Food Allergies -- I just don't get it!

Posted by
Deb on September 01, 2000 at 04:13:42:

In Reply to: "Hidden" Food Allergies -- I just don't get it! posted by KMD on August 31, 2000 at 22:32:01:

Hi Kathy,

A couple of the books that Bob McFerran recommends cover these kinds of "allergies" and because they are so different from the true allergies that you are so familiar with, they sometimes use the term addiction. This term also has problems, as people are sometimes offended by it, but it does explain the situation better. These intolerences are caused by LGS & overexposure to certain foods(sometimes in conjunction with the food being metabolically unsuitable) and can be reversed by abstaining from the food for a time period, and then eating it not too often. I haven't heard these called hidden food allergies - hidden food addictions would be better.

The books are :
An Alternative Approach to Allergies Theron Randolph
Brain Allergies William Philpott

Does that all make more sense to you?

Deb.



Re: "Hidden" Food Allergies -- I just don't get it!

Posted by KMD on September 01, 2000 at 09:19:29:

In Reply to: Re: "Hidden" Food Allergies -- I just don't get it! posted by Deb on September 01, 2000 at 04:13:42:

Thanks Deb,

What you wrote makes a lot of sense.

I made a note of the books you recommended. This is the second time in a week that "Brain Allergies" has been recommended to me. Looks like I better get that one FAST!

:o)



Re: "Hidden" Food Allergies -- I just don't get it!

Posted by KMD on September 01, 2000 at 09:22:46:

In Reply to: Re: "Hidden" Food Allergies -- I just don't get it! posted by Johnelle on August 31, 2000 at 23:01:59:

Hi Johnelle,

I was NOT familiar with NAET, so thank you for enlightening me that this exists. I also did a quick search last night on this site under that topic and found some rather discouraging posts. I guess it is like many things, it works for some people and not for others. I would bet that in this case, a lot of the failure rate can be traced to the inexpertise of the practitioner.

Thanks for the good info! I will be keeping an eye open for new NAET info as it comes out.



KMD, this is what I've learned about "Food Allergies"

Posted by Straw on September 01, 2000 at 11:32:53:

In Reply to: "Hidden" Food Allergies -- I just don't get it! posted by KMD on August 31, 2000 at 22:32:01:

KMD,

This is what I have learned, as my child has had severe behavioral problems & I had to learn a lot quickly (took me around 3-4 years to understand all this).

There are two types of allergy. One is an "immediate" allergy, like you describe with peanuts, or with some you get hives & runny nose (upper respiratory), etc. The other is a "delayed" reaction. My child used to rage around 5 hours after ingesting gluten. I went to the pediatric gastroenterlogist & didn't listen to any of her advice, but I sure picked her brain on how much time it takes what food to get where in the body. I wanted to know exactly when gluten got to the intestines. She said 5 hrs. is about right. Medicine (adderall or ritalin) would start being absorbed in the body almost immediately, other things 20 minutes or so (tylenol) and gluten, would go through the stomach & in about 5 hrs. get to the intestine. Kinda like if you eat something bad & you have to go to the bathroom or vomit in about 5 hrs.

Anyway, due to Candida yeast problems (yeast can eat holes in the intestine, causing leaky gut syndrome) or celiac disease (no enzymes to break down gluten/casein), the intestine can become porous. If the intestine actually has "holes" in it, and the small intestine is damaged (due to yeast or damage by gluten) then, the small intestine cannot break down food properly. These partially broken down food particles (called peptides) actually pass through the small intestine, & inter into the bloodstream, where they can cross the blood brain barrier and go straight to the brain. Gluten & casein can actually mimic neurotransmitters & scramble sensory systems. My child is severely ADHD & I did a lot of research on autism, because I felt autism was just an exaggerated case of what my son's behavior was.

Anyone who is interested in this connection (or if your child craves wheat or milk) I strongly suggest you read the book, "Unraveling the Mysteries of Autism & PDD" by Karen Seroussi. It is a facinating, well-written book, and it totally explains this whole topic & gives you dietary interventions that may help your child. I basically was doing all this stuff (Nystatin, etc.) because of Dr. Stolls advice from here and also info from the book, "Biological Treatments of Autism & PDD" by William Shaw. Karyn's book wasn't out until March 2000, I had started the diet last November, as I had put two & two together. We had already been on Pfeiffer Treatment Center vitamins & after a gluten free/casein free diet, the vitamins started being absorbed better in his body.

Good luck. Please order the book. It will really help you understand the why's & hows, etc. Also, "Special Diets for Special Kids" by Lisa Lewis is wonderful.

Karen Seroussi & Lisa Lewis had children who were diagnosed with autism at around age two, and came up with basically the same interventions independently. They both have basically "healed" their children of autism & speak at autism conferences. They are just two moms, like us who would do whatever it took for their kids. I believe in 5 to 10 years the diet & other therapies (Nystatin powder) will be the first thing that is suggested to the parents of autistic children, as it is the thing that is really helping these kids. My child was diagnosed (only) with severe ADHD, but I figured if the diet would help autism, it would help my child. It did. My child craved gluten & dairy. (Pizza, rolls, mac cheese, milk, etc.)

Straw



Oops, I forgot to add this:

Posted by Straw on September 01, 2000 at 11:41:10:

In Reply to: KMD, this is what I've learned about "Food Allergies" posted by Straw on September 01, 2000 at 11:32:53:

Sorry, I forgot to tell you that the favorite foods the kids eat (when they have the holes in the intestine) also go through the holes & enter the blood. The blood starts attacking the partially digested food, as though it was an "infection" & thinks it is supposed to attack it. These are the "food allergies" you are talking about. The most often eaten foods are the ones in the blood, that the blood starts making antibodies to. This is why you have to get a blood draw to send off to a lab that does this kind of testing. They have to see what antibodies are in the blood & this is also why the tests are 100% accurate. (Like you might test allergic to trout, when you have never eaten trout). These tests are pretty good, though (they are still trying to improve them). To find these hidden food allergies, do not go to a regular allergist that puts skin pricks in your sking. Those do not test for the antibodies in the blood. You need a blood draw for those. The skin prick kind probably would tell you, though, if you would start sneezing, or get hives from those foods or trees, or mold, or whatever.

You have to get the intestine healthy, or your immune system will just go wacko & you will then be "allergic" to everything you encounter, including chemicals, etc. Digestive health is very important.

Straw



Re: Oops, I forgot to add this:

Posted by KMD on September 01, 2000 at 13:01:37:

In Reply to: Oops, I forgot to add this: posted by Straw on September 01, 2000 at 11:41:10:

Thanks Straw,

I bought the book "Biological Treatments for Autism and PDD" as soon as it was published. I do not have the other 2 books, but am familiar with their work. I am very "swamped" (if you will) with urgent reading materials at the moment and with my writing and research, so to tell you the truth I probably will not be reading either of those any time soon. But I agree with you and the authors of those books that if "us moms" don't find the cures for what ails our kids, nobody will! I am familiar with the GFCF site.

You are right about it taking 3-4 years to figure out and get a handle on what to do, and to find what works for your child. You are to be congratulated! My son was diagnosed at the age of 2, about 2 1/2 years ago. With all I have done for him so far, he has made HUGE gains and I do look for him to be integrated next year! Now people really have to spend some time with him to notice he's "odd" or autistic. Everyone, including me, thinks he's absolutely wonderful / adorable.

As moms with special-needs kids, a lot depends on our level of enlightenment and education as well, as to what we are willing to try. When it came down to really eliminating all forms of casein and gluten 2 years ago, I could not bring myself to do it, and I did not wholeheartedly believe it would be worth the effort. I knew you also had to give up all forms of rye, oats, bran, etc. and that means no cereals, no crackers, no breads of any kind, no cookies, no cakes (those things were important to us at that time), and of course giving up casein means no milk, no cheese, no whey, no butter (Nucoa is OK), no ice cream. Ice cream was very important! And I thought milk was good for the body.

As I have seen RHJ say many times, I used to feel this to be extremely difficult to do if not impossible because I live "in the REAL world!" I also didn't know about "whole foods" or this site. The more I learn, the more I ponder, the more I change. Sometimes I fail at my attempts the first few tries but I never quit and I always make gains.

Now I am in a position in my life where I have a more "whole-istic" view of how all these things tie together. I am much more able to do the things that need to be done. For me, "slow and steady wins the race." I have had to do things as I became educated enough and motivated enough to do them. For example, I have had success with a loving approach, lots of attention, lots of therapy, a modified ABA program, and at certain points the supplements DMG and Super Nu-Thera made a HUGE difference in my son's life.

I don't care to go for allergy blood tests, and I believe that these CAN be inaccurate for the type of reactions we are talking about here (LGS - peptides). I think the best way to discover for yourself what helps is to eliminate it and take notes. Then, reintroduce it and take notes again.

I would love to hear how you went about it, what you eliminated, and what changes you saw in your child and how soon, how dramatic, etc...



Re: OK, are you For or Against the Real World?

Posted by RocketHealer Jim++ on September 01, 2000 at 14:00:52:

In Reply to: Re: Oops, I forgot to add this: posted by KMD on September 01, 2000 at 13:01:37:

KMD:

Thanks for sharing.

I don't know how you have time to do all your usual book editing work along with collaborating with Walt on the new version of his book, along with spending soooooo much time here in Ask Dr. Stoll BBS, not to mention spending some time with your family. Something else must be being dropped along the way.

I hope it's NOT taking care of yourself as you ought! I've been guilty of that myself, and I have the results of my earlier choices to deal with now.

Not sure if you expressed it quite this way, but I do believe that even though we DO live in the real world, we need to make the best choices for ourselves and our families. As you have learned, some things that seemed really "important" to us as one time can be seen differently later. As I've said about several former hobbies, "I certainly enjoyed that at the time, but I have no idea why I'd ever want to do That again!"

Take care of yourself and your family!

RHJ++



How I went about it . . .

Posted by Straw on September 01, 2000 at 15:27:46:

In Reply to: Re: Oops, I forgot to add this: posted by KMD on September 01, 2000 at 13:01:37:

KMD,

I first kept a food/behavior diary. Noted foods & behaviors. That's how I figured out he raged after gluten. I got him blood tested for "food allergies". Blood draw. Then, I ordered the HPWF book, consulted some with Dr. Stoll, & bought all the books Dr. Stoll recommended. I practiced serving foods my child would eat that had no gluten/casein. I figured out which foods to make. I told him a "diet" would be coming. I then cooked a bunch of stuff, froze it in separate containers.

I eliminated this: sugar, dyes, preservatives, gluten/casein, chocolate, caffeine & all foods he tested allergic to, quite a list.

He pretty much lived on taco soup, whole corn chips, chalupas, spaghetti made with rice pasta & some other things. I added the nystatin powder, 4 x day. He was already on Pfeiffer Treatment Center vitamins www.hriptc.org. Four days after starting this diet he noticably improved & kept improving every day after that for about a month (subtly). The gluten/casein damages the small intestine. My belief is that after a bowel movement with the last of the gluten in there, they get remarkably better, then better & better everyday as their bodies are finally able to start absorbing the vitamin supplements & nutrition from the foods.

It isn't easy, but my understanding is that these kids can become totally normal if you are able to keep the gluten casein out.

www.glutensolutions.com has lots of crackers, etc. with no gluten. Also, I buy pasta at whole foods. Since then I have added some sugar & some other foods that are not whole, but still try to keep it to a minimum. Oreda makes some french fries without wheat on them.

After you start the diet & are doing it for about 3 months, it gets easier. We have lots of rice & corn instead of bread.

Karyn's book has recipes & "Special Diets for Special Kids" by Lisa Lewis had tons of recipes, as does Bette Hagman's "Gluten Free Gourmet."

In our case, my child was saved, basically from residential treatment in a few years. He was quite severely ADHD & had rages. I don't even want to think about how he used to be. He was never diagnosed autistic or bipolar, although he had some PDD symptoms at times (sensory issues) and bipolar symptoms (wild mood swings, which we now know were reactions to food 'allergies'). My child is very bright, with an above average IQ. He does not mind the diet, now, and asks if things have gluten, before eating. When we go to birthday parties, I pay him an extra $10 to play games while the other kids eat pizza & cake. He doesn't mind. I send extra treats for him to have at school in case a mom comes in with unexpected cupcakes for a birthday party.

We usually have whole fruit for dessert, if any.

Read Karyn's book. You might do some of the dietary interventions & wondered why you didn't read this before.

By the way, I read Shaw's book at least 5 times. I remembered the parts about Nystatin, yeast, etc. & that is what got me thinking he had celiac & I put him on the diet & it helped. My husband, though, wanted proof, so we had him tested at www.greatplainslaboratory.com (Dr. Shaws lab). The tests for gluten/casein came back & it was proof enough for my husband & the school, so both of them finally got on my team & figured out I'm not a nutcase of a mom. If no one else was going to advocate for my child and the doctor's all had basically told me, "Food has nothing to do with behavior." Now, our psychologist & P.T. sends mom's my way whose children have symptoms like my child had. They simply have no resource in the medical community to help with diet. How sad. I've told hundreds of mom's about this diet & why it works (all in Karyn's book) and probably only 10 kids so far have been lucky enough to have mom's who would pay the price to learn how to do it. Those mom want know what they can do to repay me. I tell them to tell every mom they know & keep telling moms until those moms try it. When they have gotten one child saved from this diet, they have then repaid their debt to me.

It reminds me of the starfish on the beach. With all the dying starfish, why difference can I possibly make? Not much. But, I can make a huge difference to the one starfish I throw back into the ocean. And, if I have that starfish tell all the other starfish how to stay safe, I figure my numbers are pretty good :)

Please help save your little starfish! It may make a huge difference in his life.

Straw :D



Re: "Hidden" Food Allergies -- I just don't get it!

Posted by
Vince F on September 01, 2000 at 23:07:30:

In Reply to: Re: "Hidden" Food Allergies -- I just don't get it! posted by KMD on September 01, 2000 at 09:22:46:

A friend whose children had a lot of food allergies tried
a herbal allergy product plus cayenne pepper capsules and
was able to stop geting them allergy shots.

VF



Re: "Hidden" Food Allergies -- I just don't get it! (Archive in Allergy.)

Posted by Walt Stoll on September 02, 2000 at 08:47:57:

In Reply to: "Hidden" Food Allergies -- I just don't get it! posted by KMD on August 31, 2000 at 22:32:01:

Hi, Karen.

Basically, you are mixing apples and oranges.

Hypersensitivities are like EVERYTHING else: there is a continuum of reaction. Everything from someting just tasting bad--all the way to anaphylactic shock--can be caused by the exact same mechanism. Beside that, there are at least 2 basic mechanisms: serum allergy and cellular allergy (both of which work totally differently from each other and have to be diagnosed and treated differently).

Hope this helps.

Walt



Re: "Hidden" Food Allergies -- I just don't get it!

Posted by Walt Stoll on September 02, 2000 at 08:54:45:

In Reply to: Re: "Hidden" Food Allergies -- I just don't get it! posted by Johnelle on August 31, 2000 at 23:01:59:

Thanks, Johnelle.

I have been investigating NAET for about a year and am finaly convinced that there is something worthwhile there. It is not for everyone but is safe and will help a certain % dramatically.

No one yet knows exactly why this works but I am in favor of things that cause no harm and MIGHT help where all else has failed.

I would appreciate hearing from anyone with experience with NAET (good or bad).

Walt



Re: How I went about it . . .

Posted by KMD on September 02, 2000 at 10:02:05:

In Reply to: How I went about it . . . posted by Straw on September 01, 2000 at 15:27:46:

Hi Straw,

Good for you! How wonderful that you have not only saved your own child but that you have dedicated yourself to helping other families save theirs. 2 years ago I did not believe in my head or my heart that eliminating casein and gluten would make enough difference to be worth the huge lifestyle change. Today, as you know I am much closer to realizing that contrary to what I used to think, it is probably THE MAGIC KEY.

I printed your posts so I can refer to them. I will let you know how everything is going.



Re: OK, are you For or Against the Real World? -- (LONG response)

Posted by KMD on September 02, 2000 at 10:53:53:

In Reply to: Re: OK, are you For or Against the Real World? posted by RocketHealer Jim++ on September 01, 2000 at 14:00:52:

Hi RHJ,

The comment I made about your references to the Real World was just my way of relating to your difficulties in accomplishing some of the things you have attempted (such as PWFD and regular SR). Like you said in another post recently "You know it don't come easy!" The same is true for all of us. It IS hard work, but what I am finally learning is that if this is what we really WANT, and if we stay the course, it does get easier with time.

So with my son and his autism, it will be very difficult while living in the Real World to completely eliminate casein and gluten from his diet and that is the reason for my previous lack of commitment (or state of denial) in accomplishing this. NOW, I am coming around. I still live in the Real World, and I know that doing such a drastic elimination places a lot of extra stress on us, but when I get out my calculater it computes to "might well be WORTH IT".

Just like doing SR faithfully for 6-12 months, following the PWFD perfectly for 6-12 months, or anything else, none of us will ever know what these things will truly do for us unless we give them the proper trials. It is not strictly a black-and-white discipline, it is an emotional battle! For me, I often commit, do well for a period of time, and then slip up. Then I commit again. Each time I do this, even when I fail to be perfect in my efforts, I have NOT failed because I end up at a higher place for the effort, for the learning, and for my health. So for example I started with eating the typical American diet, and now my food choices are at least 75% improved. I started out with one leg dangling over the cliff and not knowing anything about meditation, and now I am beginning to have SOME success with SR. I know I will get there!

Now on to your other point: People (who know my schedule and my life challenges) keep asking me "How in the world do you have time to write a book?" I kindly tell them "I don't! But I choose to do it anyway." :o)

I don't have any "usual book editing work", only Walt's book, and I have made that my JOB at this point in my life. I am not a published author, just a person who has been told many times in my life I have a gift for writing and organizing and who loves to learn about the world of alternative medicine!

It IS time consuming and I probably DID bite off more than I "should" chew, but I find it very rewarding and a nice outlet for me mentally and spiritually. As a stay-at-home Mom with a lot of family issues, I NEED a diversion from the huge challenges I continually face in my life. I cannot think of a healthier diversion to have when you take into account the great challenge and experience of it all.

Walt has been kind enough to extend his confidence in me. I intend to make sure he never regrets that decision. I truly appreciate the opportunity to do this project with him. I need to be a little gentler on myself probably, because I am constantly pushing myself too hard due to my desire to not disappoint Walt in any way. I HAVE made great progress, however, in my "Don't challenge the Stoll" syndrome (grin - Walt)

So, just as others get in their cars and drive to work, I sit here and plug away at this book (inbetween everything else I do). If you look at my posts on the BB, you might notice that I rarely sit at the BB for more than 30 minutes at a time on weekdays, although I do return there frequently when I have a block of time to do so.

I have to make 8 daily runs back and forth to 2 different schools for my kids, and on certain days I make runs to therapy for my little one as well. And yes, I have a house to keep, meals to cook, shopping to do, bills to keep track of, people to keep in touch with, holidays to prepare for, laundry to wash, and all of that other "stuff" just like everyone else.

Perhaps what you do not yet understand, is that the vast majority of my time in doing this is spent researching! Where am I going to research for info on what Walt has to say about different health concerns?! (BB) Each time I read a current post on the BB, I am looking for good book info to cut and paste into my files. However, I get the majority of the meat for what I am writing from the ARCHIVES (straight from Walt's own words) and that means reading (actually skimming initially) them ALL as well as copying & pasting all the good info into my own Word Files for study. Once all the info is gathered, then I begin the process of writing... all the different drafts that go along with formulating a chapter. It is definitely a "work in progress" and I anticipate making changes to the whole thing up until the very last day.

The organizer/perfectionist in me is really looking forward to the day when I have the entire draft completed and I get to go through and carefully proof-read AND formulate an index with page numbers. For some reason, that sounds like so much fun. When everything is finalized, and the book goes to the publisher and is released to all, I will probably experience emotions I never knew I had.

Nothing that comes easy is ever REALLY worth having...
is it?





Good luck! :D

Posted by
Straw on September 02, 2000 at 11:41:02:

In Reply to: Re: How I went about it . . . posted by KMD on September 02, 2000 at 10:02:05:

KMD,

Yes, please keep us posted. There are a lot of people who can help you (and me, still). There is an Andy website, I need to look into it, myself. It has lots of tips. I was told that I should order both the 1999 & 2000 copies, it is so good. Haven't done that yet.

Keep in touch!

Straw



KMD, you'll do fine on the Gluten Free/ Casein Free diet

Posted by Straw on September 02, 2000 at 11:49:32:

In Reply to: Re: OK, are you For or Against the Real World? -- (LONG response) posted by KMD on September 02, 2000 at 10:53:53:

KMD,

I just read this post. You will have no trouble doing this diet after you read Karyn's book & basically figure out what you want to cook. There will be resistence at first, because these kids who self limit their diets (actually get high on gluten/casein and crave them), are actually on withdrawel as the stuff is taken away. But it is so much easier as they get it out of the system (about 4 days until after a BM or so).

I didn't know you were doing all this editing work, etc. But, after seeing your schedule & how organized you are, I bet when you figure out the diet & go after it, you'll be giving the rest of us tips!

I'm not worried at all. You'll get there.

Straw :D



NAET info

Posted by Straw on September 02, 2000 at 11:58:19:

In Reply to: Re: "Hidden" Food Allergies -- I just don't get it! posted by Walt Stoll on September 02, 2000 at 08:54:45:

Dr. Stoll,

We did a couple of NAET treatments for gluten for my child. I think we will have to do more & probably or perhaps with a different pratictioner.

I do not understand how it works, but my belief is that it somehow resets the brain (CNS, whatever, if it is done correctly) in how the brain reponds to these allergins, so instead of sending out an immune response to the body, it doesn't. (If that makes sense)

We are also doing biofeedback for my child. After about 50 sessions (I believe we will need 120 or so), I think it works by training the brain, rewarding pathways for the CNS. If the CNS works properly, then it calms the digestive system. That is what I think, as it appears that dietary infractions that my child made has not appeared to make the same reactions it made prior to biofeedback.

An example is that he had some dye by mistake & was not hyper. Also, after about 50 sessions he was able to go off adderall for the summer, because he is not so hyper he is driving us crazy. He still has to take it for school.

That's my take on both. I'll keep you posted if I find out anything else. These are just due to my impression, this is not what the NAET person or the biofeedback person told me, so I could be totally off base. I'm a business major, remember, not science.

Straw



My dog had NAET treatments...

Posted by LT on September 02, 2000 at 14:28:53:

In Reply to: Re: "Hidden" Food Allergies -- I just don't get it! posted by Walt Stoll on September 02, 2000 at 08:54:45:

which didn't help. The vet swore by them.



Re: KMD, this is what I've learned about "Food Allergies"

Posted by Reno on September 03, 2000 at 12:25:11:

In Reply to: KMD, this is what I've learned about "Food Allergies" posted by Straw on September 01, 2000 at 11:32:53:


Straw, I agree wholeheartedly with what you said. You can get Karyn Seroussi's book from her site, AutismNDI (ANDI), it gives links to Lisa Lewis and her book, Special Diets for Special Kids. I live in San Diego, very near the Autism Research Institute and I do respite for the developmentally disabled, primarily autistic. I read the book at a client's house and found it to be astounding. I have a son with ADHD (ADD combined type) and we take care of siblings as well, and I've noticed the close connection between ADHD and Autism. The comorbidity is very high, especially if it is the Asperger type. What I found interesting was the connection with fibromyalgia, etc. in the families, since I have fibromyalgia. I firmly believe the children should have the testing done from the Great Plains Laboratory before starting trial and error diets. The gfcf diet is pretty strict. The Autism Research Institute has more dietary info because Dr. Rimland (director), Dr. Shaw (director of Lab), Karyn Seroussi and Linda Lewis speak together at seminars frequently and appear to work somewhat in conjunction. The lab has sophisticated testing to test for food allergies, peptides, neurotransmitter imbalances, parasites, inborn genetic errors and the list goes on and it is patient friendly unlike the "this site is for doctors" that you see at the Great Smokies.



Why didn't I think of this before? My son has had some specific tests done...

Posted by KMD on September 03, 2000 at 20:55:33:

In Reply to: Re: KMD, this is what I've learned about "Food Allergies" posted by Reno on September 03, 2000 at 12:25:11:

Hi to anyone still following this thread (Straw?)

It dawned on me (duh!) and now I feel pretty dumb, but I did have some labwork done to test for these peptides. There is a test considered very reliable done by AAL Labs (Antibody Assay) called the urinary polypeptides. My son's results were in the normal range, which is one of the reasons I did not procede with the CFGF diet. In fact, I got the results 13 months ago:

TEST NAME RESULT EXPECTED RANGE
URINARY IAG...................12.95 H.........4.60-9.50
URINARY CASOMORPHINE BOV......NONE DETECTED......0-5.0
URINARY PEPTIDES..............57.................0-523
DES-TYR CASOMORPHIN...........NONE DETECTED......0-13.7

Anyone else had this test done? It was ordered by a very well-known leading doctor and researcher for autism here in Phoenix, Cindy Schneider, MD. She is the founder of the Southwest Autism Research Center. Formerly an OB/GYN, she changed her career after having 2 of her own children diagnosed with autism.

Anyway, my son's test results for the peptides that would be spilling into the urine were well within the normal range...

Talk at me everybody!

(I'm going to repost this as a new thread above, in case this one is getting too far down for people to notice. I will title it AUTISM CASEIN/GLUTEN TEST RESULTS)



:o) :o) The REAL World. :o) :o) Calling RHJ...

Posted by KMD on September 03, 2000 at 21:21:21:

In Reply to: Re: OK, are you For or Against the Real World? -- (LONG response) posted by KMD on September 02, 2000 at 10:53:53:

Hi RHJ,

I've been kind of checking back here and there to see your response to my LOOOOOONNNNG reply to your questions. Who knows, maybe you saw how long it was and gave up! (don't blame you, I do that sometimes).

I think I spent more time on this one post to you that I have spent writing any others! Anyway, I hope it answered to the things you were wondering about.

Take care...



Re: OK, Yes, I read it all the other day and again just now

Posted by RocketHealer Jim++ on September 03, 2000 at 23:27:27:

In Reply to: Re: OK, are you For or Against the Real World? -- (LONG response) posted by KMD on September 02, 2000 at 10:53:53:

KMD:

I read this long thoughtful post the other day and again just now, just to be sure that I did not miss anything crucial.

I really had very little to comment on it then and not much more now. Other than WOW!

When I visited Walt and he told me about your ongoing work on the book, I came away with the impression (incorrect, as it turns out) that "You do that sort of work professionally". That this is a first effort of this sort for you makes it even more wonderful.

In your research, please don't ignore the Glossary. I've tried to condense the best of Walt there, especially back when he was not archiving stuff till about a year after it happened. I think there's a lot of "good stuff" in the Glossary, ready for immediate use, where appropriate.

There is also the possibility that I have blown (misunderstood) a few things in the Glossary. If you detect same, I'd appreciate hearing where I went wrong and what it ought to say.

Keep up the good work!
RHJ++



Re: OK, Yes, I read it all the other day and again just now -- GLOSSARY

Posted by KMD on September 03, 2000 at 23:36:34:

In Reply to: Re: OK, Yes, I read it all the other day and again just now posted by RocketHealer Jim++ on September 03, 2000 at 23:27:27:

Hi RHJ,

In fact, I have printed the entire Glossary (a fine work you did I should say!) and have it in one of my binders where I keep all my book stuff. I'm sure it will serve as in invaluable resource! That was a large "labor of love" project you did for this site and I'm sure it gets used by many each day. :o)

If I find any errors, I will let you know.



Re: Why didn't I think of this before? My son has had some specific tests done...

Posted by Walt Stoll on September 05, 2000 at 09:28:02:

In Reply to: Why didn't I think of this before? My son has had some specific tests done... posted by KMD on September 03, 2000 at 20:55:33:

Hi, Kathy.

See my note about Autism today.

Namaste`

Walt



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