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Tripletmomtx

Son With Wheat Allergy Possible Celiac Developmentally Delayed Help!

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So first off my son is extremlely developmentally delayed. He is three and has maybe 2 word that are not even full words. I decided to have him tested after seeing Jenny Mc Carthy on Opera. They tested him for celiac and of the 5 panels 1 came back abnormal and the pediatrician doesnt know what that means. What is for sure is that my son tested positive for allergies to wheat eggs peanuts and soy.

Is it common to have a child very delayed because of a wheat allergy? Do they recover?


Cher Mom to 3 yr old Triplets Chloe, Paris and Jr who has wheat allergy.

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Welcome,

Can you post your son's results/ranges. Some people here can help you interpret the results.

"Failure to Thrive", is often a symptom of children with Celiac. It also can be reversed with a gluten free diet.

We have lots of moms with children with Celiac. They will be here soon. :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Yes, do post the test results.

Even if your son doesn't have full-blown Celiac, gluten-free diets are known to help many behavioral and developmental disorders such as Autism Spectrum, ADD and ADHD, Bipolar Disorder, and other nonspecific, unlabeled problems.

Many people (adults and children) don't test positive for Celiac, and yet are undeniably gluten intolerant.

Wheat allergy and Celiac are not the same thing, but it is perfectly possible to have both in one person.

Children who are developmentally delayed because of Celiac do improve once they go on a gluten-free diet, although some also benefit from occupational therapy, etc. I don't have any direct experience with this, but have read the stories of other parents.

So, even if the test results end up being negative, it is still worthwhile to try him out on a gluten-free diet!

This can be tricky at first, but it gets easier with time. It's crucial to not do it half way. That means realizing that even a microscopic amount of gluten can/will cause a reaction. Do as much reading in these forums, and ask as many questions as you want.

Some things to know:

* Cross contamination (CC) is a major issue. Wheat flour flies everywhere, and bread/cracker crumbs run around and hide when you're not looking. You have to treat this like a peanut allergy. No, he won't go into anaphylactic shock if he gets gluten, but it's the same small amount that can hurt him.

* Gluten soaks into/hides in: wooden spoons (throw them out), scratched nonstick pans (buy new ones that are dedicated gluten-free), toasters (buy a new dedicated gluten-free one), collanders, cast iron pans, pizza stones, pastry brushes.

* If a crumb touches his gluten-free chicken, the chicken must be discarded. Yes, it's that strict.

* Hands must be washed thoroughly before touching his food.

Gluten hides in condiments, sauces, dressings, rice mixes, seasoning packets, soups, and lunchmeats. It's also in non-food items, such as chapstick, lotion, shampoo, medications, vitamins, toothpaste, and baby baths. Everything must be checked out!

Ingredient lists can't always be trusted, and sometimes even product websites are misleading. Example- Oral B's website states that their children's products do not contain gluten. But if you call them and ask, they'll tell you that they can't guarantee that the raw materiels do not contain gluten. Furthermore, they do not recommend ANY of their products for Celiacs.

Nevertheless, this IS do-able. After you do it for awhile, it really is second nature. Get used to researching products- online, calling companies, and right here.

I hope this isn't information overload- it probably is. Just remember- if in doubt, don't let him have it. And never hesitate to throw a question out there on these forums. People here will help you!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Which test was positive?

There are a few issues with dev. delayed children and gluten. Some might be true Celiacs. Some test negative for Celiac and DON'T have Celiac----but for some reason, gluten causes problems/symptoms. So you child could be negative and still adversely affected by gluten.

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Well, that's Sarah for ya' . . . took all the advice and info for herself. Didn't leave much for the rest of us to share. :lol::lol:

But seriously though, she gave you some good info.

If you post his test results, can you also give us a little info on his physical and mental development. Good growth? When did you start noticing the delays? Any GI symptoms? Was your allergy testing a blood test or scratch test? Do you currently have him in any therapies (speech, PT, OT)? Any eating issues?

That's mostly so we can compare our stories with you and let you know what did and did not work for us.

Welcome to the forum. :)


Janet

Experience is what you get when you didn't get what you wanted.

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Hi, and welcome aboard!

There are many of us here who have kids either developmentally delayed or on the autism spectrum. Yes, food sensitivities/allergies can do all kinds of damage to the brain. 2 wonderful resources of info are Lisa Lewis's book, Special Diets for Special Kids, and Karyn Seroussi's Unraveling The Mysteries of Autism. I'm not saying that your child is necessarily autistic, just that there is a lot of great information in those book, and the science behind it is explained very, very clearly (in terms us normal, non-scientific people can understand).

I'm sorry your pediatrician doesn't understand the results, but at least he admits he doesn't. Most of us here have had doctors who didn't have a clue--and refused to admit it, telling us instead that it's all in our heads, or that we have IBS (which doesn't exist), or that we are depressed, and they write prescription after prescription.

Please consider delaying vaccines until you know EXACTLY what is going on with your child, and even then, I would only recommend that he receive ONE vaccine at a time, no more. THere is NO long-term research on the safety of multiple vaccines in childrem, and there is NO long-term research on the safety of the flu shot (which, by the way, contains mercury, which can cause a whole host of developmental problems).

Sorry this is rushed--gotta run! Good luck, please keep us all posted!

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Well, that's Sarah for ya' . . . took all the advice and info for herself. Didn't leave much for the rest of us to share. :lol::lol:

Janet :lol: :lol: sorrrrry, I get long winded! :D

Also, happygirl said what I was trying to say- but she said it much more succinctly. For reasons that aren't understood yet, some non-Celiacs are adversely affected by gluten.

To me, that makes it worth trying out a gluten-free diet (or gluten-free, casein free) on almost anyone with behavioral, developmental, or emotional problems. Remember, gluten is not necessary to be healthy.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Forgive me if this is incorrect. I wrote it down but cant find the paper. On the Celiac test I believe it was the IgG that was abnormal. It was 16 I think. I didnt expect so many responses. I have been searching for a forum that can give me answers.

The allergy test was a blood test. It was on a scale of 1-6. My son is a 3 with wheat and eggs and a 2 with soy and peanuts. The nurse had no info for me in regards to what this means and what I should or should not be doing.

As for vaccines, well he is three and I already made the mistake of doing the multiples in one visit thing. I just didnt know. :( And now I do and I am heart broken at the thought that this is something I could have prevented. My baby doesnt speak. And it hurts because he is a Triplet and his sisters are chatter boxes and he cant even say two words. I just want to help him. I am so lost when it comes to what I should do first. I have already taken him off all bread except for the gluten free kind. All pasta is gluten/casein free. I am trying hard to balance because his sisters are fine. They have no delays and so I have no need to not feed them their normal diet. I am so overwhelmed and hopeful at the same time. I am just praying that this change can help him :(


Cher Mom to 3 yr old Triplets Chloe, Paris and Jr who has wheat allergy.

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Gluten can be "hidden" in many safe-looking foods, like soy sauce (most have wheat as the second ingredient! :blink: ), Rice Krispies (contains malt, which is gluten), COrn Flakes (same thing), even deli tuna salad often is stretched out with bread crumbs.

Don't get frazzled--we've ALL gone through the shock of discovering what a glutenated world this is! And most of us learned about things like vaccines the hard way, and just a little too late. My second child had JUST gotten the MMR when a friend called and said, "DON'T get the MMR!!!!!." She actually has video footage of her son the day before his MMR (totally normal child, conversational, good eye contact, engaged, etc) and the day after (severely autistic--and today, 10 years later, he has not yet recovered). Of course, the doctors all insisted she was imagining things. :ph34r:

Sorry--didn't mean to get off on a rant! Just trying to offer support and helpful information here!

One difference between wheat allergy and celiac is that with wheat allergy, you only have to avoid wheat--ALL wheat. With celiac, you have to avoid all gluten, which includes wheat, rye, barley, and oats.

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Hi and welcome aboard!

I'd just like to add that some kids are really just late talkers. Is it possible that your son could be one of those? Does he make non-verbal jestures? What other issues does he have? weight and height growth charts are going in a positive direction? Does he have sleep, poop, behavior problems. In short, fill us in on the details. Then you will get more appropriate responses.

My child was inconclusive to the biopsy but we did a gluten challenge and she absolutely reacts to gluten. Turns out dairy is also a huge problem for her. So she is gluten free and dairy free and made big changes as a result. We have a nut allergy in the family so she is effectively nut free too. We have strict rules about no sharing of food or drink and that has helped.

As for your allergist...um...I would not be satified from what you have mentioned. I would find a new allergist ASAP! If your child has been tested by an allergist, that allergist - not the nurse- should be talking to you and answering all of your questions. What do the numbers mean? What will an allergic reaction look like? Do you need to be concerned with anaphylactic reactions (peanut allergies tend to require epi-pens/TwinJects)? They should be giving you print outs to take home about each food allergy and how to read labels. And also how to provide a balanced diet living with multiple food allergies.

Please go join FAAN (Food Allergy & Anaphylaxis Network) if you are not a member already. Or at least check out the site. tons of info. http://www.foodallergy.org They have shopping cards that you will find helpful.

Others on this site also have multiple food allergies in addition to celiacs. It sounds really hard and overwhelming, but once you get the hang of it it is not so terrible.

Please ask more questions and tell us what you need help with. Are you going to a pediatric gastro for Celiacs?

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I also wanted to recommend the books mentioned for you......I especially LOVED the Karyn Seroussi's book, it is really easy to read, but full of info too.

My daughter has a developmental delay, but since I removed casein (she had already been gluten free for 2+ years), the gap has finally starting closing. She was 15 months behind in language. First we went through the school district for early intervention, which really did not help much. The schools have a very wide range of what they classify as "normal" when it comes to determining what services are needed. We went with private therapy, which helped tremendously. We have also cut out soy, which I would highly recommend, but maybe after you have the gluten/casein free thing down!

If you start with those two books mentioned by Fiddle-Faddle, I think you will feel a little less overwhelmed. Time is really of the essence with these kids who are behind in language. Someone once told me that from ages 0-3, kids are learing to speak. From the ages 3 and beyond....they are speaking to learn. Language deficits have a HUGE impact on learning later on, my little girl still has learning difficulties that I feel like we'll be addressing for many years to come. If I had followed my instincts, rather than listening to everyone who told me she'd "catch up", I would have gotten her help much sooner.

I would decide whether or not you want a formal diagnosis, or if you just want to go the diet and therapy route. There are so many resources for parents trying the diet to help you get started. Dana Korn books are also wonderful to start with. I hope this helps you some! This board is a lifesaver, there are so many well informed and helpful members, you came to the right place!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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The allergy test was done through his pediatrician. We are still waiting for the referal nurse to contact us so we can see the allergist and the gastro doc.

He was tested for dairy allergy but he is not allergic to cows milk. That does mean he is not allergic to casein and dairy right????

He has no growth issues.

He has always been right on his curve.

He has no digestive issues or sleep issues.

There really hasnt been a sign of allergy issues. I only tested him because of his delays and seeing Jenny Mc Carthy on Oprah. He doesnt point or gesture he just whines and throws tantrums to tell you he wants something. He will only say eat. He is not the normal 3 yr old little boy.


Cher Mom to 3 yr old Triplets Chloe, Paris and Jr who has wheat allergy.

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I also wanted to recommend the books mentioned for you......I especially LOVED the Karyn Seroussi's book, it is really easy to read, but full of info too.

My daughter has a developmental delay, but since I removed casein (she had already been gluten free for 2+ years), the gap has finally starting closing. She was 15 months behind in language. First we went through the school district for early intervention, which really did not help much. The schools have a very wide range of what they classify as "normal" when it comes to determining what services are needed. We went with private therapy, which helped tremendously. We have also cut out soy, which I would highly recommend, but maybe after you have the gluten/casein free thing down!

If you start with those two books mentioned by Fiddle-Faddle, I think you will feel a little less overwhelmed. Time is really of the essence with these kids who are behind in language. Someone once told me that from ages 0-3, kids are learing to speak. From the ages 3 and beyond....they are speaking to learn. Language deficits have a HUGE impact on learning later on, my little girl still has learning difficulties that I feel like we'll be addressing for many years to come. If I had followed my instincts, rather than listening to everyone who told me she'd "catch up", I would have gotten her help much sooner.

I would decide whether or not you want a formal diagnosis, or if you just want to go the diet and therapy route. There are so many resources for parents trying the diet to help you get started. Dana Korn books are also wonderful to start with. I hope this helps you some! This board is a lifesaver, there are so many well informed and helpful members, you came to the right place!

They found that my son is allergic to soy and peanuts. On the scale of 1-6 they said it was a 2. I dont know what that means. I dont know if that means to cut it out all together or what.


Cher Mom to 3 yr old Triplets Chloe, Paris and Jr who has wheat allergy.

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Has he had a full developmental evaluation? Is he already in therapy now? If not, I would really get the ball rolling to get him evaluated. I had to switch pediatricians to get one who took my concerns about my dd's delays seriously. We took her to a developmental pediatrician, the wait was 6 months long. But that is where we got the prescriptions for therapy. So if you are waiting for a referral to an allergist and GI doc, I would throw in the request for a dev. ped as well!

Read about the "leaky gut" theory, I think that will really help clarify some of the confusion. The removal of casein from a child's diet (for those with autism or delays) is not due to an allergy. In a nutshell (and please, someone correct me if this is not described correctly, lol) the blood-brain barrier that exists betwen the intestinal walls and the bloodstream becomes permeable after damage. This allows large molecules from casein and gluten (as well as a slew of other chemicals and toxins) to enter the bloodstream, which in turn enter the brain. The large molecules, that are not supposed to be crossing into the bloodstream and into the brain, then have an opiate effect on the brain cells, which can wreak havoc on a developing brain.

Removing gluten and casein (and soy from my personal experience) helps heal the gut, and get the child out of the drug induced fog that has caused pretty much all neurodevelopment to come to a standstill.

I don't know if that helps any at all, or I just confused the situation more! Once I read the book by Karyn Seroussi, and did some internet research about leaky gut, the reasoning behind why gluten-free/cf diet works for these kids made alot more sense to me.


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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He was tested for dairy allergy but he is not allergic to cows milk. That does mean he is not allergic to casein and dairy right????

The problem with allergy tests is that many, many people have serious issues with gluten and dairy, but they are not ALLERGY issues, they are autoimmune issues, so they don't test positive on the allergy test.

Celiac is an autoimmune disorder, not an allergy. (It took me months to figure that out, if that makes you feel any better.)

And celiac DOES have a major impact on brain function, as you learned from Jenny McCarthy.

Many celiacs also have similar reactions to dairy, even though they are not technically allergic. But also, many celiacs have TEMPORARY problems with dairy, only until their intestines heal after going off gluten. Apparently, the villi, which line the intestine, secrete an enzyme that helps digest milk; if the villi are damaged from celiac, not only do they not produce the enzyme, they also don't absorb nutrients!

You are in a very difficult position of having to decide if you want to do further testing, which could be very beneficial in providing concrete information, or if you want to take your son off gluten and dairy immediately. If gluten and dairy are the culprits here, then you would want to go off them as soon as possible, and to heck with the doctors who want to order all the tests and make you wait for months and months for appointments, during which time your son will continue with problems.

But there's something to be said for going for testing, too, especially if they can get you in IMMEDIATELY.

But if there's a wait, I would try removing gluten and dairy ASAP, and see if it makes any difference. I would imagine you would see a difference within a couple of weeks--but most of us saw HUGE differences within days.

You might want to post what you usually feed him, and some of us can post how to substitute gluten-free foods so he is least likely to notice a change, especially if he is one of those picky eaters who will only eat chicken nuggts, french fries, mac & cheese, etc.

I don't have triplets (I am in awe of you), but I do have 3 kids, and I think it is WAY WAY easier to have the whole house gluten-free. There are enough good recipes out there that nobody will feel deprived (I make my own bread, pancakes, biscuits, cookies, and I also make my own bulk flour mixes to make them with, happy to share them with anybody), and more and more good gluten-free products hitting the shelves. Look in the freezer for Van's gluten-free waffles, they taste just like regular waffles--and we drown them with syrup anyway (real maple, not the chemical crap)!

Fleishmann's makes a very good margarine that is totally dairy free, but you usually have to go to a Kosher store or else a store in a neighborhood with lots of Jewish people to find it. Many people use coconut oil instead of butter (same consistency), too.

Karyn Seroussi recommends going off gluten first, I think--so you can buy Tinkyada rice elbows (most grocery stores have them in the organic section)--they taste EXACTLy like regular pasta--and either make your own cheese sauce (very easy) or else use the Kraft packets that come in the boxes (but most other brands DO have gluten in the packets, so stick with Kraft).

About the speech--my nephew was diagnosed with Apraxia of Speech. He was also extremely speech delayed. Personally, I'm convinced he is autistic as well, but his parents don't want him labeled as such. He is receiving lots of speech therapy, and improving very nicely, Unfortunately, his parents have a diet based practically ONLY on gluten and casein, and I can't convince them otherwise....

I'm sorry this is such a long, disorganized post! I have so many things I've learned that I want to share, but am trying to get this in between work and kids--yikes!

The only other thing I can think of right now is, if you want to make your own flours and try making a lot of the foods, you can make it a family project --give the triplets some cornstarch and water to "measure" into their own containers and play with while you go about measuring everything you need (will post details on that if you need them). Cornstarch and water is even better than playdough--it cleans up with a wet rag, you can add food coloring, and when mixed in equal proportions, it's not quite solid (goes through a strainer), but not liquid (you can pick it up and goosh it with your hands)--3-year-olds LOVE it!

Gotta run (again). Hang in there, there are tons of knowledgeable, experienced people here who will have lots of great ideas for you!

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I just want to say that development delays can be overcome. I'm not saying always; I have no idea of the stats. When my two were diagnosed, mostly with language delay but also fine & gross motor problems, sensory integrative problems, visual motor difficulty, blah, blah, blah (the labels did move around through the years), we did research about language delay. I don't know if the literature is better now. What we had been told is that 50% get better. We then tracked that down to ONE study of maybe 10 kids total, and only saw that 5 of them still needed speech therapy 5 years later.

Go with your instincts. I spend years doing research, participating in IEP meetings, support groups, & advocacy organization, and the like, and found that parents' instincts are frequently better than those of the "experts."

Intervention is good. But also make sure that your children's strengths are also addressed and the schools don't simply accommodate weaknesses, or ignore gaps in knowledge or ability because it "isn't in the curriculum."

My daughter was more delayed than my son, so I'll discuss her primarily. She didn't have a single word until she was 2 1/2 and wasn't understanding either. Some big expert told us, after evaluating her at age 2, that she might never talk, was probably retarded, and had organic brain damage (based on some perseverative behavior). She told us to start planning for our daughter's life in a group home once she was an adult. Also, my daughter had serious coordination issues and supposedly a psychological problem that caused her often violent outbursts.

Well, she started making progress (after tubes were placed in her ears -- I suspect the ear infections delayed things longer than what her brother went through). She first was in a preschool autism program, because her needs were similar. Then it was 5 years in a private special ed school, and three years in a special education classroom in a public school. Each year her test results went up by more than a year. So she was catching up.

In middle school, the school was unwilling to provide the intervention and instruction she needed to make additional progress. She was maindumped into a general education classroom. There was no instructing to her strengths, like reading. We ended up pulling her out to homeschool. The advice the therapists gave me upon leaving I ignored.

My daughter scored in the 99th percentile in her verbal testing for college. She is in an Ivy League school and her last semester found her with straight A's. She not only developed obvious English ability, after the supposed critical time period, but has taken (up to now) 3 years of Latin, 3 years of ancient Greek, 3 years of ancient Egyptian (one in HS, two in college), 1 intensive semester for reading academic German, 1 year of Akkadian, and has taught herself enough French for academic purposes.

Coordination? She is on her school's fencing team now. Psychological disorder? She has scads of friends, is sweet to her family, etc. (she even apologizes now for how she was when she was young -- I guess I shouldn't have told her).

I hope this doesn't come across as bragging. I'm just telling you all what I wish someone had told me all those many years ago when I was suffering through my daughter's problems. Tests just show where your children are, not where they might end up. Unless things have changed, those experts don't have long-term followup information on anyone they've seen. I'm sure that idiot woman from dd's age 2 evaluation still thinks she was right and that I was wrong in not bringing my daughter in for her supposed psychological problem.

My son was delayed in everything, too. He had years of every kind of therapy out there I think. He ended up in a gifted program and took a bunch of AP classes in high school. His forte proved to be math and science. He is now in grad school. But it isn't like his language is still lacking. He was a successful debater in high school and college.

Oh well, I said more than I meant to. Like I said before, I am telling you what I wish someone had told me. The only other point I would make is that the time things are accomplished are no doubt spread over a normal distribution, or bell curve. Just because someone is below the average doesn't mean they aren't going to get it eventually or this necessarily will scar someone for life, anymore than it means that kids that do things earlier are going to end up more successful.

To anticipate a question, no food intolerance has ever been diagnosed for either child.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I live in Texas and there are not any (that I know of) stores that have mostly kosher stuff. We really dont have any Jewish neighborhoods down here(that I know of). I am so lost when it comes to things like margarine and milk substitutes. My son is allergic to soy and the rice milk that I usually buy contains gluten :(. I went and bought cows milk for the first time and now I find out that it doesnt matter if he isnt allergic to milk casein could still be an issue. What about casseroles and such. What do I use in place of cheese? The non dairy usually has soy or casein from what I saw in Wal-Mart.

We are vegetarians. Can you give me an example of what your kiddos eat on a daily basis barring meat. Any good sites for recipes?


Cher Mom to 3 yr old Triplets Chloe, Paris and Jr who has wheat allergy.

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I just want to say that development delays can be overcome. I'm not saying always; I have no idea of the stats. When my two were diagnosed, mostly with language delay but also fine & gross motor problems, sensory integrative problems, visual motor difficulty, blah, blah, blah (the labels did move around through the years), we did research about language delay. I don't know if the literature is better now. What we had been told is that 50% get better. We then tracked that down to ONE study of maybe 10 kids total, and only saw that 5 of them still needed speech therapy 5 years later.

Go with your instincts. I spend years doing research, participating in IEP meetings, support groups, & advocacy organization, and the like, and found that parents' instincts are frequently better than those of the "experts."

Intervention is good. But also make sure that your children's strengths are also addressed and the schools don't simply accommodate weaknesses, or ignore gaps in knowledge or ability because it "isn't in the curriculum."

My daughter was more delayed than my son, so I'll discuss her primarily. She didn't have a single word until she was 2 1/2 and wasn't understanding either. Some big expert told us, after evaluating her at age 2, that she might never talk, was probably retarded, and had organic brain damage (based on some perseverative behavior). She told us to start planning for our daughter's life in a group home once she was an adult. Also, my daughter had serious coordination issues and supposedly a psychological problem that caused her often violent outbursts.

Well, she started making progress (after tubes were placed in her ears -- I suspect the ear infections delayed things longer than what her brother went through). She first was in a preschool autism program, because her needs were similar. Then it was 5 years in a private special ed school, and three years in a special education classroom in a public school. Each year her test results went up by more than a year. So she was catching up.

In middle school, the school was unwilling to provide the intervention and instruction she needed to make additional progress. She was maindumped into a general education classroom. There was no instructing to her strengths, like reading. We ended up pulling her out to homeschool. The advice the therapists gave me upon leaving I ignored.

My daughter scored in the 99th percentile in her verbal testing for college. She is in an Ivy League school and her last semester found her with straight A's. She not only developed obvious English ability, after the supposed critical time period, but has taken (up to now) 3 years of Latin, 3 years of ancient Greek, 3 years of ancient Egyptian (one in HS, two in college), 1 intensive semester for reading academic German, 1 year of Akkadian, and has taught herself enough French for academic purposes.

Coordination? She is on her school's fencing team now. Psychological disorder? She has scads of friends, is sweet to her family, etc. (she even apologizes now for how she was when she was young -- I guess I shouldn't have told her).

I hope this doesn't come across as bragging. I'm just telling you all what I wish someone had told me all those many years ago when I was suffering through my daughter's problems. Tests just show where your children are, not where they might end up. Unless things have changed, those experts don't have long-term followup information on anyone they've seen. I'm sure that idiot woman from dd's age 2 evaluation still thinks she was right and that I was wrong in not bringing my daughter in for her supposed psychological problem.

My son was delayed in everything, too. He had years of every kind of therapy out there I think. He ended up in a gifted program and took a bunch of AP classes in high school. His forte proved to be math and science. He is now in grad school. But it isn't like his language is still lacking. He was a successful debater in high school and college.

Oh well, I said more than I meant to. Like I said before, I am telling you what I wish someone had told me. The only other point I would make is that the time things are accomplished are no doubt spread over a normal distribution, or bell curve. Just because someone is below the average doesn't mean they aren't going to get it eventually or this necessarily will scar someone for life, anymore than it means that kids that do things earlier are going to end up more successful.

To anticipate a question, no food intolerance has ever been diagnosed for either child.

Thank you Thank you Thank you! I really needed to read that. It is so hard to imagine that in 10 yrs he will be normal and this whole struggle will be a fog in memory. I am so scared of the future as I see no improvement from day to day. Thank you.


Cher Mom to 3 yr old Triplets Chloe, Paris and Jr who has wheat allergy.

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Thank you Thank you Thank you! I really needed to read that. It is so hard to imagine that in 10 yrs he will be normal and this whole struggle will be a fog in memory. I am so scared of the future as I see no improvement from day to day. Thank you.

The thing is, it is often hard to see the progress from day to day. I kept a chart with the testing each year and made the comparisons. I was in quite a state the first year or so. Sometimes it is better to look at each day and what you want to accomplish, rather than looking at what has to be done in the future. In the beginning, I think I kept a list of each word my daughter had. I had all these things the therapists told me to do at home, too, and I kept track of it.

Maybe getting organized and keeping records is how I cope with upsetting things.

Have any therapists talked to you about using signed exact English with your child? My kids both got this in their classrooms in the early years and it seems to help with language-delayed kids. I remember I got quite good at it, then it ceased to be necessary. It seems that the visual clue helps make the word more memorable or understandable. I remember my daughter's hands being moved to make the signs.

In the autism program, she was taught like a little animal, but I have to say it worked. She got an M & M every time she did something right, saying a word, pointing out the right card, maintaining attention (at first, a real big problem). In fact, this was the intro for her college admission essay ... "The experts said I would probably never talk, but they underestimated the power of chocolate." We laugh that she might never have learned to talk if chocolate wasn't around :lol:

It seems like language delayed kids need to be directly instructed in things like vocabulary, spelling, grammar, writing, and the like. The modern curriculum seems to assume that children just get this stuff from osmosis. Maybe some do, but mine didn't. This is something to look out for in the future.

My husband and I spent a lot of time doing educational research. (Another coping mechanism, probably). What we found was that, often, research studies involved daisy chains of citations (A citing B's opinion, B basing his opinion on C's opinion, C basing his opinion on earlier articles by A and B full of unsupported conclusions), studies without control groups, etc. So be skeptical if someone tells you "research shows" something.

Of course, the intervention my kids got earlier was very good. Things just began to stink once they got into the regular education system. (My son went to a private school around the time my daughter came home to homeschool.)

One thing I forgot was to mention that even IQ testing isn't perfect. Supposedly this is something set for life. My daughter tested the first couple times at 60. Then each time she tested it went up. We stopped testing once we left the public school system, but the last time it was well over 100 for the ability score (the achievement was still low, so everything averaged to around 100).

Was the question about vegetarianism directed to me or someone else? We didn't become vegetarians until seven years ago so my kids were older when the change happened. And they don't have problems with gluten or soy like I do.

Now I based meals on starches I can have (rice, wild rice, quinoa, millet, buckwheat, gluten-free pasta (I've found different ones based on rice, corn, quinoa, potato, and buckwheat), beans, lentils, peas, split peas, potatoes, sweet potatoes; winter squash would work too but I don't like it), with added veggies and the like. I find that I can find lots of recipes that work in general vegetarian or vegan web sites or cookbooks. Sometimes you just need to sub gluten-free pasta or a different grain.

www.fatfreevegan.com has a gluten free recipe section. There is also a Yahoo groups with scads of recipes in the files: http://groups.yahoo.com/group/Vegan-and-Gluten-Free/ At www.recipezaar.com, you can search by criteria, including gluten-free and vegetarian. The book "Food Allergy Survival Guide" contains vegan recipes without gluten and other ingredients that are common problems.

Really, if you look at what you can eat, rather than what you can't, you can eat up with lots of variety. I posted one of my favorite recipes here:

http://www.glutenfreeforum.com/index.php?s...l=baked+risotto

You can see that this is very customizable.

Often I will decide on a starch, then start adding things to it. I might cook up some quinoa, and then add beans, whatever veggies I have around, and then what seasoning would seem nice. A favorite is to add black beans, corn, and salsa.

Oh dear. All this talking about food is making me hungry. I just realized it is way past lunch time. See what happens when I get on my soapbox :rolleyes:


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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Forgive me if this is incorrect. I wrote it down but cant find the paper. On the Celiac test I believe it was the IgG that was abnormal. It was 16 I think. I didnt expect so many responses. I have been searching for a forum that can give me answers.

The allergy test was a blood test. It was on a scale of 1-6. My son is a 3 with wheat and eggs and a 2 with soy and peanuts. The nurse had no info for me in regards to what this means and what I should or should not be doing.

As for vaccines, well he is three and I already made the mistake of doing the multiples in one visit thing. I just didnt know. :( And now I do and I am heart broken at the thought that this is something I could have prevented. My baby doesnt speak. And it hurts because he is a Triplet and his sisters are chatter boxes and he cant even say two words. I just want to help him. I am so lost when it comes to what I should do first. I have already taken him off all bread except for the gluten free kind. All pasta is gluten/casein free. I am trying hard to balance because his sisters are fine. They have no delays and so I have no need to not feed them their normal diet. I am so overwhelmed and hopeful at the same time. I am just praying that this change can help him :(

You have a plethora of great info that I won't repeat for the sake of repeating. One thing I think that wasn't addressed was your son's testing. The fact there was an IgG of 16 considered abnormal means he may have had what's called a "Celiac Panel" this panel is not a definitive Dx for Celiac but can show if the immune system is in overdrive, attacking gluten with immunoglobulins. The IgG is kind of a multiplier if you will, or an indicator of what the immune system is doing. It is what they use to correlate the count of immunoglobulins to more decisively determine if the patient is a possible Celiac or not. All these numbers are thrown off by the current health of the person. If you had your son on a relatively gluten-free diet, it could have thrown everything off. Less gluten means less antibodies from the immune system to attack the poison (gluten) in the body. If you are looking for a concise Dx you'll have to keep your son on gluten until the panel and ultimately the biopsy is conducted on the intestine.

Having to deal with only the Celiac diet for my son, I unfortunately can't offer any insight on the developmental delays. I do know there are serious positive results from gluten-free diets in autistic children.

Good luck and you'll find lots of help here, like you didn't see that already. ;)

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OK - first of all let me start out with a little (and I do mean little) knowledge on the allergy testing. Both my GI and Pediatrician think that the skin testing is more sensitive than the RAST (blood) testing. However, if they were already drawing blood, they may have gone ahead and ordered it. Plus, I believe you would have to have the skin test done at an allergist's. On the blood test, the higher the number, the more sensitive. I recently had a friend who's son just had the RAST testing. Out of the 8 food items that were flagged, 4 were at a level 3 and 4 were at a level 2. They were only going to concentrate on getting rid of the level 3's. I heard this from another parent as well. (Not sure if that was the parents' choice or the doctor's recommendation.) In the boy who was allergic to the 8 items, his parents had him tested for behavioral reasons - not for rashes, hives, breathing, etc. He was hyped up and when he was put on meds for hyperactivity, he started sleeping through his classes. So meds are gone and they are trying to control it with his food - it's early on so I'm not sure how it is working. I mention this to point out, again, the relationship between gut and brain and that food may cause behavioural type reactions.

A few more questions for you . . . not that you need to answer them here, but questions to ask yourself and help you look for the right kind of help.

Is the only delay speech? Does he understand you? Does he respond (correctly) to your questions/orders? Has his hearing been evaluated? Has he seen an ENT? What does your pediatrician say about his speech delay? Autism has been danced around - does he have any other behaviours that would make you think he should be evaluated? How does he do socially with his sisters? with other children?

If your son is under the age of three (just in case you were rounding up), then check this site for evaluations and help with getting appropriate therapy.

http://www.dars.state.tx.us/ecis/index.shtml

Over the age of three, your school district should help.

We had to use a similar program in Indiana and they were very helpful.


Janet

Experience is what you get when you didn't get what you wanted.

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