AutismWeb Forum

Good morning everyone... this is my first post here (or on any autism forum). It looks like a great forum with many knowledgeable folks. Glad to be aboard!

Our son was diagnosed with PDD-NOS three months ago and little by little we've been removing items from his diet. He has always been dairy free (his sister has a severe dairy allergy) and we immediately cut gluten upon diagnosis. Slowly we've been cutting items out as we move towards the Specific Carbohydrate Diet. We've been SCD compliant for a couple of weeks now.

He's been making good progress, but we're of course unclear on how much of that came from diet, how much from starting ABA, and how much from other treatments we've started (calcium, cod liver oil, zinc and more started recently).

We just got the results back from a Comprehensive 96 IgG food panel from Alletess. The results shocked us. For those who haven't had one done, it is a blood test that checks for sensitivities to 96 foods. The sensitivity is reported back from "0" (no sensitivity) to "3" (most severe). I've read reports about the occasional "3" for some foods but mostly some "1" and "2" sensitivities.

These were my son's 3's:
Coconut
Gluten
Pea, Green
Sesame
Soybean
Watermelon
Wheat

These were my son's 2's:
Asparagus
Barley
Cashew
Garlic
Lemon
Malt
Oats
Orange
Peanut
Rice
Tomato
Walnut

Have any of you seen so many 3's and 2's come back on one of these? Our understanding is that all 3's and 2's should be removed from the diet, though our DAN doctor said we may want to keep tomato because (a) he'll eat it and (b) it provides so many good nutrients.

But man... this makes him look like the classic case for SCD, huh? Gluten, wheat, barley, oats, rice, and soybean (oh my, soybean scored over .900, nearly 2x as high as anything else). Consider the fact that he was dairy free and had a ton of soy, I wonder what exactly we were doing to the kid. Makes you feel so helpless.

The real bummer here is that items like coconut, peanut, and citrus fruits were foods we switched to in the wake of moving to SCD that he really took to. Now we have to cut those out. Coconut is a bummer, since it was an alternative to almond flour. We just ordered a bunch of other nut flowers from Digestive Wellness. Of course, not cashew and walnut (sigh).

Something else I'm curious about is whether we need to adhere to SCD after getting these results. Meaning, are all items "illegal" on SCD because they are "suspected" of being 2s and 3s in these kids? So, could we introduce potato again even though it's not allowed on SCD (but he has no intolerance to it).

Thanks so much for your help!

My son had very similar results. 27 food allergies. Most grains were 3's, Rice being the worst! and oats. This definitely told us we had to go SCD. Most moldy foods were a problem for us too, melons, seeds, nuts and coconut was the highest of all. Be careful of supplments having hidden coconut source, glycerin, veg. source mag. stearate, medium chain triglyceride. palmitate. This was the biggest blunder of all for us, coconut was in a lot of the supplements! The milk and wheat allergies went away after a year on the diet, but we got new ones like egg and chicken and oats were still a big one (true allergy I think). Be careful with the nut flours as walnut was a big one for us, almond a 1, but they are possibly cross contaminated since they sell all the flours. Look into the GAPS diet too, which is very similar to SCD, but adds bone broths for healing. We still can't do grains here, they are just too hard to digest. We tried soaking and making flat breads, but they stir up yeast too much at this stage for us. But I have to say the SCD has mostly given me my son back in a big way. We had to take out fruit to see the most progress. He was having die-off from the diflucan constantly with fruit as our snack. My son was just able to add sunflower seed butter and some almond butter to his diet after a year doing the diet. See my post on our progress to see some of the things that have really helped us. Adding the ferments in is a big part of getting the gut healed. Don't be too afraid to try the yogurt when you get to that stage. I think not using it for so long hurt us instead of helping us with this diet. We use a raw form of goat's milk which my son tolerates along with the butter. (I do think he is still reacting to the strep strain with OCD behavior, but his gut is healing and for now, I will still use it some). Raw butter causes no reaction at all now. It's the lactose!!! not casein. It feeds yeast the worst, more than sugar. We haven't added cheese yet. We also can't eat too many carrots. We give those maybe 3 times a week at the most. Don't overdo the eggs if that wasn't an allergy, we made that mistake as our breakfast food and he developed an allergy to that and chicken. Anyway, glad to see you here and it looks like you are on your way to making your child healthier and possibly recovering. Add in the clay baths now! This is the only form of chelation my son can do without stirring up yeast and it needs to be done early instead of at the end.

Jen

Thanks for the info, Jen. I have to be honest... I had never heard of the clay baths. Will definitely look into it.

That's rough that you had to remove fruit. Our son eats a lot of fruit (that's the breakfast option we use most), so hoping we can stick with it. Good point about cross contamination of the nut flours. Not sure how to keep an eye on that... will have to look into the company's production policies.

We should try the yogurt. He *LOVED* his coconut milk yogurt, but of course we can't do that anymore. He saw my daughter with a banana pudding yesterday and asked for a yogurt. So good on so many levels (he asked!!!), but feel so bad I can't give it to him.

Thanks for the info and the warm welcome!

I won't lie to you, the diet has been the worst part of all of this. Green beans, squash (chips made with butternut squash are really good), zucchini, most meats, bacon (organic from WF), Hot dogs (from WF), broccoli, spinach, eggs (for a while), carrots, sometimes cabbage fried in oil (it is very good this way), very limited. I cried many days doing this and made lots of meatballs with veggies hidden in them. Adding the yogurt was a true blessing and it really has made life a bit easier. Adding the sunflower seed butter is also great with celery sticks (great brain anti-inflammatory). We also give him a dandelion tea and milk thistle for his liver. I'm going to order pumpkin seed butter too, which is rich in zinc. We get the saurkraut from whole foods, Bubbies brand in the refrigerator section. I just add the juice to his drink. He talks in complete sentences, has great eye contact, still has tactile defensiveness some, but laughs at the t.v. he actually said "awesome" the other day, he just turned 3 in august. If I slip and give too much fruit/carbs at all, I lose all of this pretty quickly. So, I rather cook from scratch and have my son doing as well as he is. It is hard with 3 kids. but worth it. Do the diet to the letter and don't start adding nut flours in a rush to get things more normal. It will backfire and you won't have the healing that this diet is so capable of. The nuts are high in oxalates and this causes problems for many. You have to get the nutrients up to par (zinc, adequate vitamins and minerals) before doing the nuts. jmo. Also, be aware there are specific regressions on this diet, don't panic and think it is not working. It is mentioned in Dr. Pangborn's book and on the website that there are regressions on the diet as well. it is SOOOOO HARD!!! but worth it

Jen