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Gluten diet & others for PANDAS kids


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I have a DD11 who has PANDAS. She has some co-existing conditions as well:

 


  •  
  • PANDAS
  • Immune Globulin deficiency
  • GERD
  • Reactive Hypoglycemia
  • Migraines

Thus, her dietary issues can be complex with all the care I must take to accommodate her medical conditions. Further, her dad and I are divorced and she is with him every Tuesday evening and every other weekend. He has said he is not big on cooking and they tend to either get prepared foods and/or eat out a lot. She recently has indicated that she thinks increased sodium intake may make her feel worse and I have indeed viewed some horrific episodes after high sodium intake. I'm working on developing a chart that will help us figure out what things may be triggers for her.

 

I have read a little here and there on this forum about gluten free diets, triggers in dyes (I avoid them in food/meds, but do even those in shampoo & bubble baths impact via topical absorption???) and am eager to know more... please advise. Thank you!!!

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We are also on the GFCFSF Egg free diet along with Feingold. You would be surprised at how simple shampoo with a dye in it can affect children. At first it's alot of work but once you get used to it it's so much easier. I have a child that go to his fathers every other weekend and we just pack food for him to take. We keep a loaf of breadin the freezer at his fathers house for use and his father is willing to buy rice milk or almond milk for him to drink. We also avoid preseratives too. I have enjoyed the changed once we started FG in Nov of 2008. A lot of the problems we had took about 6 weeks to clear and once I added GFCF it was SOOO much better. Now I know when they get stuff they shouldn't and most of the time my kids are great about not eating food that they know is bad. Feel free to e-mail me if you want more info.

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Hi, My DD6 was on a GF diet and it helped her with her reflux. It also seemed to calm her down a bit so that she was able to stay on task a bit better. I noticed that whenever she would have ANY kind of starch including corn, rice, potato, etc. her stomach would bother her. I finally put her on something called the specific carbohydrate diet. Pretty much no complex carbs. With that not only did her reflux clear up pretty much altogether, but I noticed that her autistic like symptoms which I associate with PANDAS lessened dramatically. Anyway, thought I would mention this diet. It is rather extreme, but has been worth it.

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My boys are GF, mostly CF and also Feingold (plus they take epsom salt baths to help eliminate that which falls through the cracks with feingold). Here is the problem. When I started the diet, unbeknownsed (sp?) to me, ds4-at-the-time had strep/pandas. So, i was never able to get an accurate "read" as far as what the diet did for him, but I persevered b/c the doc told me to. I then put my ds15months-at-the-time on gfcf due to early signs of autism. Within a couple weeks he started engaging with the family!! So, for him, outside of pandas, it has been a great intervention. But what it has done for pandas I have no idea. I keep them on it b/c 2 docs have told me to due to the autism features.

 

I know that has absolutely not helped you decided LOL! I will say this, my chiropractor firmly believes that anyone with autoimmune disease needs to be gluten free.

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I know that has absolutely not helped you decided LOL! I will say this, my chiropractor firmly believes that anyone with autoimmune disease needs to be gluten free.

 

 

based on what I have read, there is strong argument for trying to keep your kids paleo. robbwolf.com

 

This means, meats, poultry, seafood, fruit, veggies, nuts. No processed food. Lots of coconut oil and olive oil.

 

Michael

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Guest TwinCitiesMom

I have a DD11 who has PANDAS. She has some co-existing conditions as well:

 


  •  
  • PANDAS
  • Immune Globulin deficiency
  • GERD
  • Reactive Hypoglycemia
  • Migraines

Thus, her dietary issues can be complex with all the care I must take to accommodate her medical conditions. Further, her dad and I are divorced and she is with him every Tuesday evening and every other weekend. He has said he is not big on cooking and they tend to either get prepared foods and/or eat out a lot. She recently has indicated that she thinks increased sodium intake may make her feel worse and I have indeed viewed some horrific episodes after high sodium intake. I'm working on developing a chart that will help us figure out what things may be triggers for her.

 

I have read a little here and there on this forum about gluten free diets, triggers in dyes (I avoid them in food/meds, but do even those in shampoo & bubble baths impact via topical absorption???) and am eager to know more... please advise. Thank you!!!

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Glutenfree/dyefree/vegetarian. It's really only helped me with my GI issues, which were pretty horrible. It's AMAZING what a difference my diet has made. I haven't eaten meat in seven years. Used to vomit all the time... but without meat, I haven't vomited ONCE! Not even with swineflu. Cutting out gluten eliminated the rest of the GI symptoms, like bloating/constipation/diarrhea, which in turn obviously put me in a better mood. The only adverse thing to note is that going gfree did seem to make my headaches worse for the first couple months... But who knows. Good luck!!!

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Guest TwinCitiesMom

I have a DD11 who has PANDAS. She has some co-existing conditions as well:

 


  •  
  • PANDAS
  • Immune Globulin deficiency
  • GERD
  • Reactive Hypoglycemia
  • Migraines

Thus, her dietary issues can be complex with all the care I must take to accommodate her medical conditions. Further, her dad and I are divorced and she is with him every Tuesday evening and every other weekend. He has said he is not big on cooking and they tend to either get prepared foods and/or eat out a lot. She recently has indicated that she thinks increased sodium intake may make her feel worse and I have indeed viewed some horrific episodes after high sodium intake. I'm working on developing a chart that will help us figure out what things may be triggers for her.

 

I have read a little here and there on this forum about gluten free diets, triggers in dyes (I avoid them in food/meds, but do even those in shampoo & bubble baths impact via topical absorption???) and am eager to know more... please advise. Thank you!!!

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Guest TwinCitiesMom

Great Plains Laboratories recently featured a webinar by Dr. James Greenblatt about gluten, casein and OCD. It was insightful and free to view. Go to the Great Plains website and look around for archived webinars if you wish to view. There are several other topical articles as well.

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We never really pinned any of my ds18's tics to a particular food intolerance (sugar, chocolate & pizza did seem to cause an increase in tics prior to this last year's exacerbations that are now so bad we don't even see any difference any more)

 

You do want to go carefully & transition rather than jump into anything with both feet - shocks to the system are an esp bad idea with our kids. We did try to go SCD (specific carb diet mentioned above - see pecanbread.com for more info) while also avoiding all sugars - even most fruit - to help with yeast issues, but my ds's serotonin was low so it was too much. If we had done it suddenly rather than gradually, it would have been like yanking the rug out from under him.

 

From the research I have looked at on PubMed & things some of the DAN!docs are saying, it appears that it is more an issue of adding to the stress of an already stressed body & immune system. There are so many things in processed foods that our bodies deal with as toxins - it is like trying to force their systems to deal with an additional battle to all the ones that are going on already. We don't want their immune systems to flare up any more than we can help it, so the more inflammatory foods you can remove or reduce, the better.

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Hi,

From what I understand, kids on the spectrum can have difficulty digesting gluten and casein which then break down to opioid peptides, hence causing problems focussing, etc.

We discovered that our DS16 had gut issues (strep and staph) and wasn't processing casein (dairy protein) but had no problem with gluten. In order to help his gut heal, we've all gone on a GFCF gut healing diet to support him, plus it's really healthy. (I feel good!) We stopped dairy first and concentrated on finding dairy alternatives (such as nondairy chocolate! That was a biggy!) Then we steadily went gluten free as I found alternatives in the supermarket and health food stores. And slowly we reduced grains, and went organic, low sugar, no potatoes - pretty much a cave man diet of meat and veggies/salad/fruit, though we do still have GF pasta and soy milk products. Many on similar diets cut out soy and corn as well. Plus I cook with coconut oil.

Result?...no big life altering stuff but DS is convinced that he feels better (he looks healthier), and can focus/concentrate better and he's committed to it. I think he's now more able to absorb what he's taking in (diet and supplements) as his gut is healing.

Dunno whether this is PANDAS related or not...but they coincided for us.

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GREAT responses! Thank you all so much for the information! I'm too exhausted to read tonight, but will try to look over this more tomorrow. I also need to prepare for our trip to see Dr. B this coming Wednesday! :)

 

She recently mentioned that she thinks sodium might be a problem for her in making her feel worse. Hyper-natremia has some interesting coinciding symptoms, so I'm looking at that as well as a possibly source of exacerbation. I rarely ever use salt in cooking, but she goes out to eat or has prepared foods usually with my ex (her daddy).

 

Given her hypoglycemia issues, this could become rather complicated as we have to limit her carbs & simple sugar intake, so I'm going to have to do quite a bit of research on this. I also offered to her dad that if this becomes too complicated with her diet, that I'd be happy to prepare her foods to send with her on his visitation times.

 

When I asked about Gluten free, I didn't realize there would be posts about Casien free. VERY interestingly, she had a dairy intolerance/allergy as a newborn - horrible painful colic, poor little babe. I removed ALL dairy from my diet so I could continue nursing her and she did great then - was a very happy baby/toddler. One sure has to wonder...

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