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lieze

Eating food problems

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@kisekis - dysautonomia can cause IBS, GERD, gastroparesis etc. I have all 3 and they are controlled with medications ( PPI, Zofran ), improving any nutritional deficiencies ( Vit B12, Vit D and Ferritin ) and diet ( high protein, cooked vegetables, low carb ) and avoiding large meals and eating 6 small meals or snacks a day. Earlier you mentioned you like to eat mainly carbs - that is a bad idea for dysautonomia. Carbs will mess with your glucose and insulin levels. I have to eat them in moderation or they can cause POTS problems. Also - a poor diet will cause nutritional deficits as I mentioned above and these deficits can cause or worsen dysautonomia. You may want to ask your doctor to check your Vit D, Vit B12 and Ferritin levels since they often are low in people with dysautonomia and can easily be supplemented. 

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@kisekis - +1 to Pistol’s response.

My doc said that every patient is a bit different. This discussion group seems to prove that. 

For me, he started with a low level antibiotic, Xifaxan, that isn’t supposed to cross into the bloodstream, nor kill much of the ”good” natural biom  in my gut. I unfortunately did not see much improvement from his plan. Since then, I have less gastric emptying, and more gastroparesis. I rely on antacids more now than ever. I was already on Zantac which is the best thing for me. Zofran does well at reducing nausea.

For me, sugars, dairy and spices must be eaten in small doses. Actually, I eat smaller portions of everything now. But beyond that, the specifics don’t seem to matter. If I ruled out everything that upset my stomach, I’d eat and drink nothing. Water can upset my stomach. But then again so can bright light, standing up quickly or any type of stress. 

I used to hope that one diet or another could fix things. But now I have given up un that hope.

It seems to me that society and doctors like to blame poor health on poor food choices. I spent a long time trying to find the right diet, while friends of mine ate crap and had great health. I’m not saying eating well doesn’t have its benefits. I try to eat well. I’m just saying that it’s easier to tell people to fix their diet than to help people that have weird symptoms. One doctor said try the fodmap diet. Another says low carb/hi protein. One said, only eat oatmeal. Another suggested vegetarian (it’s hard to do high protein as a vegetarian). A friend of mine espoused celery juicing. Another said an all-liquid diet is the way to go. Another suggested a certain blend of spices every day. I was desperate enough to try many of them. 

Back when I was little, people thought you needed to eat a balanced meal from the four food groups. Three decades ago everyone said low fat foods are what people should eat. So food companies reduced fat and added sugar and carbs to food to make them taste better. Now they say low carbs. But they add fat to make it tase better. Almost none of the food recommendations  are scientifically proven. The only thing that actually improves almost anyone’s health is calorie restriction.

Subgroups of people, like the lactose intolerant have easy solutions that others try too. This happenes with diabetes and sugar and With celiacs and gluten.  Each diet helps a subset of people. But doctors and other “helpful people” think those diets work for the broader population.

The diet that seems to help for Dysautonomia is smaller portions. But it only helps a bit. If you’re flaring up, there’s a good chance you’ll have GI issues too.

Sorry for the long diatribe.

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@lieze
I'm looking into if antihistamines would help with POTS symptoms, since my nose inflammation issue seemed to happen around the same time the POTS (and food intollerances started). I'm using an antihistime spray that seems to be helping my nose from being stuffy at night, but my POTS symptoms and food intollerances are still the same. I saw you posted on 2011 about trying Benedryl, and checked this post, and saw you tried it and it that it seemed to help you potentially. Can you elaborate on what it means when you say a drop on the tongue is (what dossage/form), and why did it reduce your anxiety?

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@lieze
I'm looking into if antihistamines would help with POTS symptoms, since my nose inflammation issue seemed to happen around the same time the POTS (and food intollerances started). I'm using an antihistime spray that seems to be helping my nose from being stuffy at night, but my POTS symptoms and food intollerances are still the same. I saw you posted on 2011 about trying Benedryl, and checked this post, and saw you tried it and it that it seemed to help you potentially. Can you elaborate on what it means when you say a drop on the tongue is (what dossage/form), and why did it reduce your anxiety?

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