Food issues, please help. Long post

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As long as we're talking about food, I would like some help. There is a long history of my daughter and how we got to where we are with her in my blog. At this point we are starting to re-introduce some foods to her, as well as try to get her to try new foods. She has been diagnosed by a very reputable gastroenterologist as being gluten intolerant and she has really bad migraines due to gluten. A DAN! doctor told us she is allergic to just about everything, but we are very suspicious that that doctor knew what she was talking about, none-the-less, it is increadibly scary for me to reintroduce her to foods, especially since her reaction to gluten has been so strong.

What I'd like to know is, how much of her food issues are related to just asperger's being picky, how much is related to food intolerance, how much is related to sensory issues.

She used to enjoy very spicy food. She would drink tobasco sauce and cinammon straight from the jars. The DAN! doctor told us this was due to a reaction to salycilates, but I am wondering if it is sensory.

Until recently she really LOVED to eat both plain boiled squid and sauteed calves' liver. She will now (as of this week) demand we buy them but will no longer eat them. The DAN! doctor said a deficiency in zinc could do strange things to the taste buds, and our gastroenterologist said she is zinc deficient, could this change be due to taking zinc suppliments?

We gave her a 1/2 a snack size box of raisins and she regressed. Any ideas why this could be?
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She will not eat fruit or vegetables plain or served in a normal fashion. She will eat FROZEN peas, dried peas, and fruit rolls. She loves store-purchased dried!! ! The DAN! people did not want us to give her store purchased dried fruit.

Before seeing the DAN! people she loved to eat sauce. The DAN! people scared me away from sauce. I tried putting sauce on some gluten free spaghatti and she no longer wants to eat it.

If all of these issues are related to having aspergers and being a picky eater, what are some suggestions?

Any advice or any directions as to a good book or websight would be appreciated. I'm even OK with being yelled at and called a bad Mom if you are willing to offer usefull advice!
Thanks!! !

I read recently that a love of spicy food is one of the classic signs of pyroluria, or in less frightening language; Vitamin B6 and Zinc deficiency.

Here's a list of common signs:




It could be a lot of things, depending on the symptoms you label "regression":

It could be the very common fructose intolerance, poor/impaired digestion of fructose in 40% of the population, which will encourage pathogenic bacteria and candida in the gut, aswell as blocking tryptophan, causing depression.

On the other hand it could be because she is intolerant of plant lipid-transfer-proteins, present particularly in the skin of fruit, but which probably wouldn't cause direct psychological changes.

But the thing that I would tend to suspect is their effect on blood-sugar levels, and how this impacts on the orexin system, ( orexin is the neurotransmitter responsible for energy levels, wakefulness, sleep cycles, and for a number of cognitive functions useful, originally, for finding food ). Sugar/glucose switches off orexin, especially a big high like from raisins, and could cause lethargic, sluggish, half awake behaviour, with mental confusion, etc. Orexin system deregulation/deficiency is also, by the way, likely to be caused by autoimmune disorders, of which celiec/gluten intolerance is one, and depending on when you eliminated gluten from her diet, may have had some effect on her orexin system.

Fructose also has a damaging effect on lipid metabolism. It disrupts the storage of triglycerides etc.

The other factor with the raisins could be the same as with the store-bought dried fruit; it may be contaminated with gluten, because flour is still often used to stop dried-fruit sticking to each other.

There's something else that is relevant but can't remember it!

Hope that's of some use anyway. Good luck!

PS. Peas are one of the plant foods highest in zinc. Calfs liver may be too rich in Vit A for her if she is getting a lot from butter, and other dairy products.

Last edited by ouinon on 16 Nov 2009, 3:28 pm, edited 2 times in total.

Coincidence? You don't know its cause and effect until it has happened more than once.

But take me with a grain of salt here. I read the food threads more to learn than to advise. Its not a road we've gone very far down ourselves; I'm just trying to get a picture so I don't put my foot in my mouth when other parents ask about it.

Hi there

I am not sure if this will be helpful to you or not because my experiences are different to yours but here goes. My son is ASD and has LOTS of issues with being picky with his foods and I have Coeliac Disease (auto immune response to gluten). SOme things I have learnt are:

My son will only eat certain foods, certain ways ie. uncooked brocolli not cooked, tinned peas not frozen, real cheese not processed, carrot sticks not grated or cooked,
meat but not stewed or with gravy, bananas but never show the peel in case there is brown on it etc etc. In essence he will eat most foods but only if I find the right way to serve and present it ( this has taken a loooooong time to figure out) lol.

With me even though my allergy is to gluten, the damage that was done to my stomach lining has made it impossible to eat many other foods ie. dairy, fruit or large quantities of vegetables. Some preservatives are also bad and also stress can cause a reaction even if I have eaten nothing. This could be the case with your daughter.

Perhaps you could take her back to very natural plain foods and keep her at that for a while to let her stomach heal. Also, trust her instincts she will know better than anyone what foods make her feel good and bad. If you are worried about her nutrition levels make her a "milkshake" with Ensure of something similar until things get better.

Best of Luck

I don't want to bother you with stuff that probably isn't very relevant, but I used to (and still do) love eating frozen vegetables, namely peas, corn, and lima beans. The texture and cold were/are both interesting and calming.
For years when I was really little, one of my favorite foods was raw broccoli, but I refused to eat it if it was cooked. Too mushy. I have never eaten cooked carrots or pumpkin pie for that reason- wrong texture, they feel like baby food in my mouth.

THANK YOU!! !! ! Thank all of you for replying. Ouinon's suggestion that the raisins contained gluten makes a lot of sense as her reaction is similar. A big thank you to hazelm and LizzyLoo for letting me know me know there are others out there with similar sensory preferances as my daughter. It's going to take a while for me to sort it all out, and I really really really appreciate the help!