experience with food intolerances?

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

experience with food intolerances?

Postby EmilyV » Fri Jun 16, 2017 7:11 pm

My 2.3 year old son with a diagnosis of ASD had really bad eczema on dairy, and when we removed it (and gluten), eczema improved a lot. However we have been unable to wean off soy milk - tried rice milk - definite food intolerance to it (eczema). Then tried home made almond milk - food intolerance to it (eczema). We just tried home made coconut milk - and looks like he is developing even worse eczema from it than even from almond milk.
We also think he has intolerance of fish products... We are at a loss. :? We already cook everything from scratch, only whole foods, no sugar, preservatives or additives. His allergy testing was negative so those are not allergies but intolerances.
Please advice, what else to give for milk, which specialist to see? we saw an allergist and a nutritionist. Did anyone have any similar experience?

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Sat Jun 17, 2017 8:52 pm

Daughter had a different experience.  Tried rice milk, grandchild didn't like it, so she then refused any type of milk and weaned herself from a bottle at the same time.  Her nutritionist said she didn't need any of it. So then she drank water (filtered of course) flavored with a little bit of organic pear juice.  I guess my question is why do you need a milk substitute? Has your nutritionist advised it?

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Sat Jun 17, 2017 10:12 pm

Grandmother, how old was your granddaughter when she weaned herself off? I worry he wouldn't get enough calories without any milk at all, also it's such a routine part of his day three times daily. He loves milk! and loved almond and coconut milk, switched in one moment. So first we wanted to go GFCF, so we were off dairy. Actually given he had a confirmed allergy to dairy 1st nutritionist advised to get off dairy and substitute with soy milk because it would fulfill the calcium needs. 2nd nutritionist who specializes in ASD recommended us to get off soy milk (we ourselves had long wanted to get off it) and transition to almond or coconut milk and also take GI Prochild vitamins for ASD kids with 300 mg of Calcium.

We are open to stopping milk altogether of course if we can't find any other alternatives. How did you assure your granddaughter was getting enough calcium, other nutrients and overall enough calories?

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Sat Jun 17, 2017 11:13 pm

She was about 25 months old and grandchild had also loved milk.

Nutritionist gave a whole lesson about milk.  Said man is the only creature that drinks milk beyond weaning and the only creature that drinks the milk of another creature.  Anyway, she would visit my daughter's house, said these children are toxic and can't tolerate any additional toxins, so she showed her how to "green" the environment, and observed grandchild eating.  Said she didn't need milk and that she was getting enough calcium from diet, so grandchild didn't take calcium supplements, nutritionist never mentioned calories.  As far as other nutrients, grandchild was taking a multi-vitamin.   Obviously, the first premise is to do no harm, so daughter always checked with pediatrician about everything she was doing, but I suspect nutrition isn't their strong point.

So it seems you're in a quandary about two nutritionists.  Perhaps you should ask the second nutritionist if the vitamins with calcium are enough and if he really needs almond or coconut milk, especially given his reaction to them.  If it's fine to eliminate them, then your solution may be to just keep watering down whatever milk he's drinking until there is no milk left.

miraclev25
Posts: 36
Joined: Thu Mar 16, 2017 7:42 am

Re: experience with food intolerances?

Postby miraclev25 » Sun Jun 18, 2017 3:41 am

Emily,

Indian millets are known to have a decent calcium content, you can try extracting milk after soaking them overnight and see it it works for you.

https://millets.wordpress.com/recipes/f ... i-extract/

i-jerry
Posts: 135
Joined: Wed Dec 21, 2016 7:46 pm

Re: experience with food intolerances?

Postby i-jerry » Mon Jun 19, 2017 5:20 am

how about camel milk?

jaumeb
Posts: 167
Joined: Fri Mar 25, 2016 10:48 am

Re: experience with food intolerances?

Postby jaumeb » Mon Jun 19, 2017 9:32 am

I eat goat yoghourt.

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Mon Jun 19, 2017 10:18 am

Emily, just a thought.  Maybe the problem isn't almond milk, coconut milk, or now fish.  It seems you added those vitamins with calcium at the same time you were trying them.  Maybe it's too much calcium.  I've been suspicious of calcium for awhile. I'm curious, does the timeline fit?

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Mon Jun 19, 2017 1:09 pm

Thanks everyone for advice. Some really good suggestions! We would like to completely eliminate free glutamate.
Grandmother, actually we haven't started the vitamins with lots of calcium yet. how did you and your daughter manage to give your little granddaughter enough calcium while she was on GFCFSF? They need at this age at least 700 mg, and it's so hard to get! We are trying to do Dr. Reid's smoothies, but he has been refusing them so far... :( I guess if he drinks it we can give him a lot of kale this way which has lots of Calcium.

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Mon Jun 19, 2017 9:35 pm

Emily, you're not helping me figure out the puzzle of what is causing your son's food intolerances, back to the drawing board for me.

Daughter and I both researched, but daughter did everything.  Have no idea how many mg. of calcium, but after nutritionist said she was getting enough from diet, never gave it another thought.  Was more concerned that she wasn't absorbing vitamins due to her inflamed digestive system.  Even harder than GFCFSF, she went on to the SCD diet, broccoli, squash pancakes, almond flour muffins, carrots, peas, coconut oil, eggs, berries, etc.   

If you want milk, I vote for trying all of the above suggestions.  You could also research the calcium content of various brands of mineral water.

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Tue Jun 20, 2017 12:23 am

Emily, I knew rice and rice milk weren't permitted at all on the SCD diet.  However just saw that almond milk and coconut milk can only be tried after being on the diet for 6 months, even though almond flour and coconut are fine at the beginning.  In other words, some digestive healing has to occur first before they can be introduced.  This may be why your son reacted to them.  You might want to consider going on this diet.
http://www.breakingtheviciouscycle.info/legal/listing/

bhawin
Posts: 15
Joined: Thu Jun 15, 2017 2:56 pm

Re: experience with food intolerances?

Postby bhawin » Tue Jun 20, 2017 5:03 pm

Emily/Grandmother,

Does nutritionists give dietary suggestions after running tests (blood) or do they suggest based on your diet schedule?

How do you find a nutritionist specialised in ASD? Does your pediatrician recommend? My doc wouldn't budge, all she says is daughter is meeting growth charts. Can we refer ourselves to one?

Most importantly does insurance cover nutritionist?

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Tue Jun 20, 2017 11:00 pm

Grandmother,
I think you nailed it actually - perhaps he is not ready yet for almond milk and coconut milk due to overall still high level of inflammation. Gut inflammatory markers were ok on tests, but either tests we did did't detect it or his inflammation might not be gut-specific. Our nutritionist told we are so close to SCD that we might as well try it.

Bhawin,
nutritionists can't typically order tests but they can interpret tests ordered by other doctors (allergy doctors, GI doctors, PCPs). We came to visit after we already had some allergy tests done.
i accidentally found 2 nutritionists in MA who specialize in ASD. First we went to a GI doctor specializing in ASD who referred us to a nutritionist. The other one we found by going to a regular nutritionist, and she told "I don't specialize in ASD, but this one does". Our insurance does not require a referral and covers nutritionists. I think you can find centers with nutritionists covered by your insurance (hopefully) and call the center and ask if anyone specializes in ASD.

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Wed Jun 21, 2017 9:59 am

Emily, I hope it's the answer and that you can still use almond flour and coconut oil.

Bhawin, Emily's suggestion for finding a nutritionist is excellent.  Grandchild's was recommended by her therapist.  She did basic autism diet, eliminate gluten, casein, corn, soy, all food additives, and go organic.  Also said to add digestive enzymes, probiotics, and Epsom salt baths.  She watched what grandchild ate, went through rooms looking for no-no's like non-stick pans, unfiltered tub water, household chemicals, etc.  She couldn't recommend vitamins, said to ask doctor.  Had vitamin levels tested, very high in B12 and very low in D, but doctor said it was fine (it wasn't).  Also had already had allergy testing that turned up nothing.  Insurance paid but grandchild also had a health condition, severe constipation, which might have made a difference, so if your child has a medical condition, be sure to make it known.  Daughter went further on her own, SCD, supplements, etc.

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Thu Jun 29, 2017 10:31 pm

Update: he refused to drink any more coconut milk, so we have been off any milk now... After we stopped soy milk, which was the only remaining processed food, his eczema got actually a bit worse - but his tantrums improved dramatically 24 hours after being off it. Any idea why eczema is worse? We have not added any new products. Maybe he was getting some substance from it which was actually helping (e.g. carnitine even though it was probably low in soy milk). Maybe it was a "withdrawal"? We made sunflower seeds milk but he is now refusing any milk without even trying it. We following Grandmother's advice and offered water with pear juice but he refused it and even spit it out! :oops:

Grandmother, what is the idea behind Epsom salt baths? What probiotic did you use? Also how long did you wait after one specific intervention before you start a next one?
Thank you very much for your support.

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Fri Jun 30, 2017 1:19 pm

Emily,  the pear juice flavoring was just to have her drink more water and apple juice isn't permitted on SCD.  She took all her vitamins and supplements in straight pear juice and liked it.  If he drinks plain water, don't worry about it.  Water is a great way to detox.  Tip from nutritionist - since these children can't always ask for water, keep a cup near him at all times.  If he drinks any kind of juice, you can use that to flavor water if he won't drink plain water.

Epsom salt baths are an old-fashioned way to detox.  Epsom salt one of the best natural and harmless chelators, magnesium better through skin than oral.  You can google it.  First thing therapist said to start and nutritionist said to continue.  Two cups in bath water and let him play for about 20 minutes before washing him.  Check with his doctor or nutritionist due to his eczema to be sure it's safe of course, but it's also an old-fashioned way to heal eczema, minor wounds, burns, etc.  Also get a tub faucet filter to eliminate whatever chemicals might be in your water.
http://www.ehow.com/how_5883026_soak-bu ... salts.html

I'm not an expert on eczema, but it could be his body's way of trying to detox.  If that is what is going on, then it could be a sign that his body is trying to rid itself of bad stuff and more able to now that bad stuff isn't being added.  Also could be due to yeast infection.  Didn't know grandchild had that until she started to transition to SCD and showed the tell-tale anal ring rash, stool test didn't show it.  Also had lots of mysterious rashes and frequent viral infections during healing process.  Basically didn't know how sick she was until her diet and environment was cleaned up and her immune system started to function.

Everything eliminated and/or added about a week apart, some like all food additives eliminated together.  Probiotics - used different ones.  Probiotics better refrigerated and multi-strained.  Avoid probiotics with "strep" strain, linked to PANDAS.  You'll find lots of probiotic studies, like this one:
Probiotic Therapy Alleviates Autism-like Behaviors in Mice | Caltech

Check your messages, will be sending more "greening" tips once I write them all down.

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Fri Jun 30, 2017 1:56 pm


EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Tue Jul 04, 2017 11:03 am

Grandmother, I can't thank you enough! We are so lucky to have you on this forum.

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Thu Jul 06, 2017 5:49 pm

Update:
he has been off soy milk and basically on diet that has no processed foods at all, no free glutamates for 11 days. Instead of soy milk we add sunflower seeds milk which we make ourselves into his food since he refused to drink any milks. So his tantrums are better, his eczema is better now, BUT his eye contact is definitely worse and response to name worse. I also realized in soy milk it was a lot of vit B12 and in sunflower seeds almost none, could this be it? The level was 1009, but I read in children with autism in the brain the level is low.
3 days ago we started pro child vitamins for children with ASD which has a lot of B12, so far can't see a "wow" - eye contact is still poor.
Please help!

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Thu Jul 06, 2017 6:37 pm

He may not be able to properly absorb those vitamins, especially the B12. It's absorbed in the lowest part of the small intestine, the site most likely to be inflamed.  Grandchild had been on the diet about 6 months before she had methyl B12 added, so her gut was healed enough to absorb it orally. A lot of parents use B12 shots.  So it may not have anything to do with what was in the soy milk.

As far as some things getting worse and others getting better, we saw that, healing isn't a straight line.  Also grandchild regressed every time she had a virus, but each regression was less than the one.  So expect ups and downs.  I think the fact that his tantrums and eczema is better is very encouraging.

Unfortunately, I don't know anything about sunflower milk.  I did see that the SCD diet only permits seeds after 3 months, seed flour "is not allowed because the quantity of the flour way surpasses the few seeds that Elaine had in mind when she said seeds are permissible after 3 months", and seed butters are illegal.  So perhaps the seed milk is too many seeds too soon.  Why are you using sunflower milk? 

Also, have you tried cod liver oil?


Return to “Diet and Biomedical Treatments for Autism”