experience with food intolerances?

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EmilyV
Posts: 31
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
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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: 31
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
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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: 12
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: 64
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: 42
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: 31
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: 42
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: 42
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: 12
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: 31
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: 42
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.


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