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The role of diet/food in flares


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During our 5-year journey, the one thing I have consistently noticed is the effect of various foods on DD's behavior resulting in reactions/flares.

 

The Feingold diet was helpful for a while until it became almost impossible to keep up with, as well as obviously not being a "cure".

 

We had her tested for food allergies and mustard came up high on the list. We have avoided it for a while, and tried it again this past weekend. Within hours, she was a different child -- huge flare.

 

SO....how does this fit with PANS/PANDAS? We also notice an improvement with her on antibiotics as well as ibuprofen. So we know somewhere this fits.

 

We have also seen her respond temporarily to high doses of vitamins, which I assume acted as a band-aid to the brain which is probably starved for vitamins due to the inflammation.

 

What are the thoughts on diet/food and brain inflammation??

 

 

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I am a patient and I notice this consistently too. Usually when I eat something with alot of bread and carbs or with sugar. It is astounding how much of a player it is on my mood and head pain. It is so hard though to follow gluyten free and dairy free though because I feel such lack of pleasure all the time and am agitated and pych meds make me hungry that I want to eat those foods for the pleasure it will give me. ALthough i always regret it after.

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I have two voices in my head: Is it a separate, co-morbid issue and just a food intolerance/mood issue, or is it connected to Pandas> in the sense that if it the food goes undigested>which eventually causes bacteria/inflammation>then causes lesions in the gut>LEAKY GUT>which when leaches into the blood stream>causes an autoimmune reaction> Pandas or just Food Intolerance which is essentially a similar reaction in the sense that it is believed that antibodies created by the leaky gut crosses the BBB and causes inflammation and mood disturbances.....

 

See the dilemma? I have a Pandas twin and a strictly Food Intolerance twin....both react to the same food in a negative way.

My conclusion: When it comes to certain foods, if it causes a reaction: Avoid

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"It is so hard though to follow gluyten free and dairy free though because I feel such lack of pleasure all the time and am agitated and pych meds make me hungry that I want to eat those foods for the pleasure it will give me."

 

THIS IS NOT THE CASE AT ALL. Gluten and dairy free is very easy to follow today. you just need to inform yourself about gluten free products that are available in your area. go to your supermaket and healthfood store and spend some time there figureing out what they offer.

second, there are planty of ways to supplement -- nuts and meat can help.

it takes time to get over cravings, however.

you may also want to try probiotics, starting with Align.

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"It is so hard though to follow gluyten free and dairy free though because I feel such lack of pleasure all the time and am agitated and pych meds make me hungry that I want to eat those foods for the pleasure it will give me."

 

THIS IS NOT THE CASE AT ALL. Gluten and dairy free is very easy to follow today. you just need to inform yourself about gluten free products that are available in your area. go to your supermaket and healthfood store and spend some time there figureing out what they offer.

second, there are planty of ways to supplement -- nuts and meat can help.

it takes time to get over cravings, however.

you may also want to try probiotics, starting with Align.

I was just documenting how it was for me so it is the case personally.

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"It is so hard though to follow gluyten free and dairy free though because I feel such lack of pleasure all the time and am agitated and pych meds make me hungry that I want to eat those foods for the pleasure it will give me."

 

THIS IS NOT THE CASE AT ALL. Gluten and dairy free is very easy to follow today. you just need to inform yourself about gluten free products that are available in your area. go to your supermaket and healthfood store and spend some time there figureing out what they offer.

second, there are planty of ways to supplement -- nuts and meat can help.

it takes time to get over cravings, however.

you may also want to try probiotics, starting with Align.

I was just documenting how it was for me so it is the case personally.

 

I totally get how you feel! Gluten and dairy cause me terrible headaches and it took me over a year to originally figure that out. Once I knew though, I "cheated" fairly often and just dealt with the headaches because I craved them so much (especially gluten!). But keep at it and do take advantage of the replacement foods that are out there. I found a local gluten-free deli and can get wonderful sandwiches and muffins there when I'm really craving something with carbs. Whole foods also has wonderful GF pasta, cookies, pies, etc. They give gluten-free tours of their store to help you learn about what they have available. But as time goes by, I need these less and less. Keep trying!

Edited by mama2alex
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  • 3 months later...

Like to echo Mama2Alex here, how are you, M2A? Been on this forum a while, haven't we? My son is totally off dyes and colors and aspartame. Watch out for emulsifiers too, as was posted, that's polysorbate 40 for those keeping track.

Anyway, I had to post this because my son is improving on abx and because he is staying away from gluten religiously.

Studies have found associations between gluten sensitivity and disorders in every part of the neurological system including the brain, spinal cord and peripheral nerves (1). Gluten is a significant trigger in psychiatric disorders, movement disorders, sensory ganglionapathy, ataxia, neuromyelitis, multiple sclerosis, cerebellar disease, cognitive impairment, dementia, restless leg syndrome, migraines, apraxia, neuropathy, myoclonus, hearing loss and virtually every other neurological disorder (2,3,4, 5, 6).

For many individuals there immune system gets so overworked from gluten sensitivity and other environmental challenges such as toxins, parasites, vitamin D3 deficiencies and trauma that they can have severe immune reactions that last months after one provoked exposure. This means that consuming gluten on one day can cause an inflammatory assault that could last 2-3 months afterwards (5). This is why it is so critical to be as strict as possible when avoiding gluten and other inflammatory irritants.

 

A lot of people think that they get off gluten and see nothing for a month, that that is enough. It's not. See above.

So while my son is getting two abx, and anti inflammatories, they would mean little or nothing if he weren't off gluten. I believe that totally.

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Many foods have inflammatory properties, which can cause problems in PANDAS kids. Look at the book "Diet for a Pain Free Life" It's written to address people with inflammatory joint conditions to help them reduce inflammation/pain in their joints, but it's a great resource of information of foods that commonly cause inflammation.

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