Gluten-free, casein-free, and sugar free. Ugh.

[Anonymous]

OP here. Hi everyone. Thanks for your replies. Yes, you guys are right that I am very confused. I should have been more clear. The doctor (who is just our mainstream pediatrician but who specializes in this stuff) did say he isn't truly allergic to these things, but he has food sensitivities to them. As far as the sugar thing goes, the PP poster who said "...the problem with sugar likely relates more to the child's yeast dysbiosis. Sugars feed yeast and the yeast in turn produce lots of nasty toxins that get into the blood stream in ASD kids who have leaky gut." is exactly right. That is basically how the doc explained it to us. So I guess he is not truly allergic to sugar (which would probably be impossible) but she said he needs to avoid it like the plague.

My DS's diet right now is awful. He has sensory/texture issues so he only eats 4-5 things, none of which are all that healthy. He will eat chocolate chip pancakes (drenched in syrup), cinnamon toast (made out of white bread), cheese pizza, and chicken nuggets. He'll eat snacks too that are all crap (cookies, chips, etc.) but I don't buy them that often. Oh, and ice cream. I really don't know how we are going to make such drastic changes. He's going to be AWFUL as he's getting used to this new diet.

[Anonymous]

Leaky gut syndrome is not a proven thing.

[Anonymous]

Anonymous wrote: Would love to know who you ped is as we would like to do food sensitivity testing for our DS. We are GFCF and reduce sugar, but are not sugar free. Yes, it was tough seeing our son decline, but so worth it and now I don't find GFCF challenging. He eats so healthy and enjoys it!

Re:foods. I have made so many different dishes with beans or lentils. Hummus is a favorite snack food with vegetables.

Can he eat eggs? If so, I recommend organic eggs. I make so many different kinds of omelets for DS and he likes eggs scrambled with potatoes.

Can he have nuts?

Can he eat avocados? They are particularly good for kids on the spectrum (don't recall why) and they are full of healthy fats good for all.

Are you doing probiotics too? That helped our son.

Yes, he can eat eggs but he won't right now. He used to throw up on them when I made them when he was a baby. He can have nuts, but not peanuts. Peanuts came up as one of the foods that he is very sensitive to. Although he's had peanut butter his whole life and I never noticed it doing anything to him. And yes, he can have avocados, but again he's never even tried one.

[Anonymous]

Anonymous wrote:What type of allergic reactions was he having to sugar? I have never heard of that allergy...that would be very hard to accommodate given the natural occurrence of sugar in so many food items - fruit being the main one. How high was the IgE antibody level?

I am surprised they gave Abilify to a child. Did they try other meds? Just curious as to what made that the right choice for him?

He was originally misdiagnosed with bipolar disorder at age 6. For 2 years we believed that diagnosis, so he was being treated with mood stabilizers and anti-psychotics. Abilify is something that is given to bipolar kids. It made him SO much worse.

[Anonymous]

Anonymous wrote:Wow, OP, that is a lot. I would have a really hard time with no chicken, beef, fish. The GREAT news is that you have a clear path and it should all get better from this point on. This is really a very good position to be in!

OP, could I ask a couple of questions about the situation? Did your child have very obvious gastro issues? And was this a urine or blood test? Could you share what the test order was? And who your ped is? Thank you very much.

No, he didn't have any gastro issues besides reflux. Normal pooping everyday or every other day. This was a blood, urine, and stool test. Our pediatrician is Rebecca Vickers in Arnold, MD. She ordered the tests. We had to pick up the test kits and take DS to our local hospital for the blood draw part of it. Then all specimens were overnighted to Great Plains Lab (in Kansas, I believe). I think we had the IgG test and the OAT test done.

I don't think Dr. Vickers is currently taking new patients, but I could be wrong. Insurance (we have BCBS) covered all of the tests.

[Anonymous]

Which of the probes did they use to diagnose leaky gut? And what were the numbers in the urine recovery?

[Anonymous]

I had similar testing done for my son with a natropathic doctor. When we received the results she provided us with a list of alternatives to all the things that my child should avoid. It was very helpful. No cows milk products but could have sheep and goat milk products, etc.
We substitute almond milk- unsweetened vanilla, much less sugar than rice milk.
I followed the new meal plan for about 3 months pretty solid, but it became unbearable and my son was feeling persecuted and now just have eliminated some of the items that we actually saw make an impact.

you may want to consider meeting with someone like Kelly Dorfman. Her book What's eating your child? was really informative and gave me some strategies for getting my child to eat some foods he wasn't eating before.

[Anonymous]

There are two cookbooks-

http://www.amazon.com/gp/product/1936608634/ref=as_li_qf_sp_asin_tl?ie=UTF8&tag=everpale-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1936608634 and

http://www.amazon.com/gp/product/098256581X/ref=as_li_qf_sp_asin_tl?ie=UTF8&tag=everpale-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=098256581X

that may definitely help. Sarah Fragoso, the author, has three boys and those recipes are kid-tested. I have the second one above and there are plenty of recipes that would work for you, especially the breakfast ones and snack ones.

[Anonymous]

Op I would start with trying to get your son to get healthier. I truly don't think it will be humanly possible for a child with the difficulties he has to manage an extremely restrictive diet. Food and meals are going to become a nightmare in your house and you will end up being driven to the edge of sanity.

I would start moving towards healthier eating. It may be a slow process given his issues but negotiate substitutions, start with him having to eat one healthy thing (he can choice one of 2-3 options)....slowly work towards that. Get the processed foods out first before you go extreme. Then you can start to eliminate one thing at a time to see if it makes a difference.

I have all kinds of food allergies / intolerances and it has made me a little skeptical of the testing process. I don't know a single person whose sensitivity testing hasn't come back positive for gluten. Also the last time I had testing done, it said I was sensitive to 30 food items...30! That is insane. I would have basically had to live on water!

I haven't gone extreme. I still eat foods I have tested positive for. I do believe that food and behavior and health are closely interconnected however I think everything has to happen in moderation. If eating becomes a big problem then you have just exchanged one problem for another.

Does he have anything that he actually had an IgE reaction to? Those would be the ones to avoid.

[Anonymous]

I would give Kelly Dorfman a call. She is in Potomac. Very helpful with my similarly eating kiddo.

I'd try to get through the yeast die off before school starts. Short term pain for long term gain. Definitely do probiotics.

We liked hemp milk, lots of omegas.

[Anonymous]

Btw, in her book Kelly talks about clients who had things like bipolar diagnoses that were having food reactions. That Abilify made him worse is a sign that something else might be going on. I have some idea of how hard things must be but once you have a plan to implement these changes it will be so much better. Get on Kelly's waitlist, you should be able to get in fairly quickly that way. Go in person, it's best for the first meeting or two, hard to take in the info over the phone.

How is DS's weight? If he's not super low you have more wiggle room. Kelly also has a recipe for a dairy sub in her book, I'd try to pick up her book this weekend. I've seen it at Politics & Prose, I got mine on Amazon. I think it will all be more doable and life may get so much better.

[Anonymous]

To the pp who said that leaky gut is not proven, you may enjoy reading the following...

(1) Developmental biology of gut-probiotic interaction Ravi Mangal Patel, Patricia W Lin Gut Microbes. 2010 May-Jun; 1(3): 186–195. Published online 2010 May 26. doi:

(2) A brief evidence-based review of two gastrointestinal illnesses: irritable bowel and leaky gut syndromes. Kiefer D, Ali-Akbarian L. Altern Ther Health Med. 2004 May-Jun; 10(3):22-30; quiz 31, 92.

(3) Intestinal permeability, leaky gut, and intestinal disorders. Hollander D. Curr Gastroenterol Rep. 1999 Oct; 1(5):410-6.

(4) Leaky Gut and Autoimmune Diseases. Fasano A.Clin Rev Allergy Immunol. 2011 Nov 23.

(5) Physiological, Pathological, and Therapeutic Implications of Zonulin-Mediated Intestinal Barrier Modulation : Living Life on the Edge of the WallAlessio Fasano Am J Pathol. 2008 November; 173(5): 1243–1252

(6) Therapeutic manipulation of the enteric microflora in inflammatory bowel diseases: antibiotics, probiotics, and prebiotics.Sartor RB Gastroenterology. 2004 May ;126(6):1620

(7) VSL#3 probiotics regulate the intestinal epithelial barrier in vivo and in vitro via the p38 and ERK signaling pathways.Dai C, Zhao DH, Jiang M.Int J Mol Med. 2012 Feb;29(2):202-8. doi: 10.3892/ijmm.2011.839. Epub 2011 Nov 15.

(8) Molecular regulation of the intestinal epithelial barrier: implication in human diseases.Liu Z, Shi C, Yang J, Zhang P, Ma Y, Wang F, Qin H.Front Biosci. 2011 Jun 1;17:2903-9. Review.

[Anonymous]

If you read those closely, you will see that they don't correspond to what OP is talking about and has been asked to do.

All this stuff about extreme food sensitivities and yeast overgrowth causing behavioral issues ... totally not proven.

[Anonymous]

OP here. I'm not sure which of the probes they used to diagnose leaky gut. I'm looking through all of the results and don't see anything.

The results came back that he's extremely sensitive to all dairy (even goat's milk and sheep's milk). I'm not sure if he had a true IgG reaction. It just came up on the paperwork that he is extremely sensitive to all dairy, gluten, chicken, beef, fish, peanut butter, watermelon, oranges, and grapefruit.

Before all of this testing, our pediatrician had me read Kelly Dorfman's book. The pediatrician said I should make an appointment with her. I'm going to call on Monday. I remember reading about her "milk" concoction that she makes. I'll have to look it up again.

To the PPs that recommended some of the cookbooks, thank you! I'm going to order some through Amazon.

Oh, and to the PP who asked about his weight. He is not underweight, not overweight either so I don't really need to stress about him not getting enough calories (in the beginning anyway).

[Anonymous]

My dear friend received a similar diagnosis for her son and spent years and literally tens of thousands of dollars on doctors who prescribed these kinds of treatment. It started with diet and "leaky gut" and went from there to heavy metals, chelation, the whole thing. Every new trend in therapy and treatment, she did. His extremely restrictive diet created social challenges for him that compounded the social challenges he already had, and put a stress on the family.

In reality, he has CP and cognitive delays from brain damage at birth -- everyone knew this but she was so desperate to do something that could help or change him that she listened to doctors who took her money and offered her unproven "solutions" in return.

Now they are virtually bankrupt and seriously in debt, with no way to create the kind of trust he's going to need to help support him in his adult life.

My friend is wonderful and loving and very very smart. She's an amazing mom and would do anything for her son. But I think her story is a cautionary tale, and I think of her whenever I see a post like OP's.