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Feeling unwell on low carb diets


Cate
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Hello.. I am yet to be officially diagnosed but I am pretty certain I have some form of dysautonomia. My consultant has referred me to cardiologist for tests for POTS syndrome. It has taken around two months for the appointment to come around, in which time I have been quite unwell. 

I also have type 1 diabetes and am fearful that this is the cause of my dysautonomia. I have been trying to get tighter control of my diabetes by trying out a ketogenic diet, whereby I eat very little carbs and lots of fats and proteins. Each time I try I get to around day four and I crash. I feel so unwell and weak and usually end up binging on carbs as my body is craving sugar. I have consulted other forums about this and they tell me it is just something called 'keto flu' but I don't think I am conveying the severity of how unwell I feel. I fear that if I continue eating that way I may collapse or end up in hospital. I know this has something to do with how much fluids are lost on a diet like this and also potentially an issue regarding an electrolyte balance upset. But I am in a catch 22.

if my dysautonomia symptoms are caused by uncontrolled diabetes then I really must try and adapt to a keto diet as my control becomes perfect. Which is what I need if I have a chance at trying to heal, or at least get control of my dysautonomia symptoms. But adapting to this way of life is making me really really unwell, to the point I am unsure whether it is safe to continue.

Has anyone else with pots or dysautonomia adopted this kind of lifestyle? And if so, how did you adapt? 

Thankyou so much in advance,

Cate

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I have bad dysautonomia but I don't have diabetes (the one fricking thing I don't have it seems). I was on that Wahls' ketogentic diet for a while, in desperation to feel better from various problems. My PCP did not want me to be in ketosis. I ended up in ketosis a lot despite not trying to so I had to eat some fruit or other carbs (no straight sugar type). I left that FB forum eventually because the people were really judgmental and didn't seem to be able to think for themselves. As it turned out Dr Wahls herself found through study that it was not good for people to be in ketosis all the time short of some reason like epilepsy where it's worth the risk. So last I read they were just recommending occasional ketosis instead of raging ketosis all the time. 

You also apparently have some genes that determine how well you do on different diets. I landed right in the middle, with carbs not making me gain or lose any more weight than fats and protein. So that may be a factor for you.

So I guess after all this rambling, my message is, don't always listen to those people of the forums. If I were you, I would find some complex carbs or something that doesn't trigger your blood sugar too high and add a little of those until you are only in mild or occasional ketosis. You can help prevent your blood sugar spikes by eating protein, fiber or fat before the carbs. It's called protecting your carbs.

 

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Hi, I am not a doctor, but I don't believe dysautonomia is generally caused by diabetes or blood sugar issues.  Though if you have any other health condition on top of dysautonomia, when your other condition is acting up it makes your dysautonomia worse.

Though many with dysautonomia feel better without simple carbs - I personally need carbs - and I have trouble digesting vegetables and other more complex foods.  I would not be surprised if I was addicted to carbs. When I stop them my body starts to freak out.  So I don't stop them.  But luckily I don't have diabetes, yet.

Diabetes runs in my family, though.  My grandmother died at a young age from complications of diabetes and my dad was borderline diabetic. He got his in check with a diet, but it was the Mayo Clinic diet.  There are many diets for diabetes that have been studied and tested. I would be inclined to stick with one of those rather than something new.  The newer diets make me nervous, especially when they are extreme.  And I would definitely make sure you are coordinating with your doctor.  

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I became pre-diabetic at the same time I was diagnosed with POTS, so I had to modify my diet for that, but I think what works for each person diet-wise is extremely individual. I've heard people say their POTS or diabetes or [insert other ailment here] improved on vegetarian, or vegan, or keto, or McDougall, or some other diet. But all of those I just mentioned made me very sick, and I'm pretty sure it wasn't "keto flu" or "healing crisis". I stayed on them for at least a month or two each, and I got worse. 

What works best for me is a low glycemic clean-eating diet. On a low glycemic diet you're still eating carbs, just low glycemic carbs / low glycemic load meals, and normal amounts of fat. It's a pain in the beginning to look up the glycemic index of every food you eat and calculate the glycemic load of all your meals, but I had an app for that at first, and I now I know what I can / can't eat without having to check or calculate.

Basically what this diet looks like for me is eating lean proteins (chicken, fish, turkey) and occasional red meat (as lean as possible) as well as really good complex carbs (whole grains like quinoa, oatmeal, certain types/amounts of beans, most veggies, some fruits, certain types of brown rice depending on glycemic index, etc). No sugars or syrups or sweeteners of any kind (honey, maple syrup, molasses, even maltodextrin, aspartame, etc are all eliminated), no processed foods. No simple carbs. I avoid the really high glycemic fruits, but eat all the other ones. My fats primarily come from sources like avocados, nuts, olive oil, and so on, and I eat a pretty normal amount of fats - nothing excessive. I avoid high-fat animal products and vegetable oils, which seem to make me sicker.

After a year of this my blood sugars were normal and I felt much better POTS-wise. Now, if I go off the diet for too long I can trigger a return of some of my old POTS symptoms. Fluid control with the diet isn't too bad - I have a good regimen of chicken broth, bone broth, coconut water with sea salt, and IV fluids.

In the beginning, I did go through severe carb and sugar cravings but it was manageable - not like the other diets I tried.

But I really think diet is a very individual thing. What works for me isn't necessarily going to work for you. You might need to try a few different approaches to see what works. I have quite a few friends with fairly severe diabetes and they all use completely different diets for blood sugar control.

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Maybe instead of trying to go straight to a ketogenic diet, perhaps you should decrease your carb intake slowly and in steps?  Jumping right in with both feet might be too much change too quickly for your body.  A slow step-down might have fewer unpleasant side effects.  Try something like 50 grams of carbs less than usual for 2 - 3 weeks, and then drop it a little more.  

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I don’t have diabetes but rather I am hypoglycemic (specifically “reactive hypoglycemia”) so I don’t know if any of my experience will help you at all but here goes….  When I was first diagnosed I cut back a lot on the carbs and sugar and felt miserable.  Not because the diet was hard to stick to, but because it made my body just feel horrible.  I slowly started to reintroduce a small amount of carbs/sugar and feel much better.  I eat small meals but snack all day (I consume food about every 2 hours and eat early up until I go to bed).  I just eat smaller portions of carbs and have protein alongside them.  If I’m going to eat simple carbs (like pasta) I just have a spoonful or two and that’s it (and I eat a lot of protein with it – for instance I make a really chunky meat sauce, have a lot of cheese, and have a lot of vegetables on the side).  I also never consume soda or juice or anything else that will instantly make my blood sugar spike and then plummet.  On a typical day I will have my buckwheat flake cereal (yes, I know, sounds glamorous doesn’t it?) then an hour later a bacon, egg and cheese sandwich.  Then when I feel like I’m crashing a bit I have some mock-peanut butter cups (dark chocolate with sunflower seed butter inside – 4 grams of protein, 17 grams of carbs and 12 grams of sugar).  It seems to satisfy my cravings for junk and wakes me up a bit (I can’t really have caffeine – even decaf makes me shake).  Then I can go with just having a cheese stick a little while later but I find I need a little bit of carbs at lunch (with protein, of course) and then near the end of the day when I’m in that slump I have another small serving of carbs.  If I want to have dessert I wait until my dinner is digested and I’m back in the low sugar slump and then have a small portion, followed by high protein and a tiny bit of carbs before bed.  It sounds like a lot but I seemed to have worked out how to keep my sugar levels on an even keel.  I also don’t really eat junk food or things with a lot of chemicals and cook a lot of my own (simple) food - not because I’m a martyr or want to, but out of necessity (I have a lot of major food allergies). 

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