Addison's Disease

[Lazybonesjones]

I haven't actually done the AIP. I have recently been diagnosed with Ehlers - Danlos Syndrome in addition to my AI so I think that explains some of my unresolved symptoms. I think about doing an AIP sometimes but I never do because to be honest I've already cut out so much and I love night shades! Right now I'm really focusing on improving my health as best I can and maybe hopefully cutting down on some prescriptions. AI or Addison's will require life long steroid replacement though, but in varying amounts for different people. That's something I learned the hard way. I had a really hard time accepting the Addison's diagnosis and medication requirements for a long time. I hated the steroids and the side effects, I hated being sick, I hated it all. It led to many problems for me, depression, disordered eating etc. Sometimes I still have a hard time, but I'm learning to accept it because I'll never get any better if I keep messing myself up. And trying to cut my meds too low or pretending nothing is wrong ultimately makes everything worse. There is no one size fits all approach and what works for one person may not work for another.

What I have learned is that for managing both of my medical conditions and associated symptoms diet is really important. Dairy, gluten, soy and refined sugar all cause problems for me. Non gluten grains and legumes other than soy seem fine. Honey, maple syrup, agave, other natural sugars and fruit seem to be okay if I don't over do it, but having too much of them equals having white sugar to me and messes up my blood sugar which leads to headaches, brain fog and fainting/near fainting. Dairy causes sinus and respiratory problems for me, and gluten and soy makes everything including my face bloat and ache. I'm currently trying out some supplements to see if they help as well, but I haven't taken them long enough to know any results for sure yet.

Staying active even when you feel like garbage is another thing that helps. Even just walking, yoga or gentle exercise help in the long term.

What about the reintroductions is messing you up? The first time I did (attempted) a Whole30 I ended it early and fell face first into a bags of candy and pasta and that really screwed with me. When I actually completed a Whole30 I felt fantastic but I did not follow the reintro timeline and as a consequence felt awful and then almost immediately got a lung infection which I don't think is entirely coincidental.

I wish I could be more helpful, I'm sorry and I hope you start to feel a bit better soon.

[OceanViewInMN]

Hello,

I wasn't sure if anyone still follows this thread or not, but thought I would see. 

I was diagnosed with primary Addison's disease and Hashimoto's thyroid disease in 2010 when I was 27 (now 33). My diagnosis came after what felt like a very long 7 month journey to find out what was wrong with me. It started then I was hospitalized from an allergic reaction (kidney failure) from an antibiotic for a UTI. I lost about 50 pounds in 7 months as I had extreme nausea. I was unable to stand for very long or walk very far. I had to place chairs throughout the house so could stop for breaks from one place to another. In fact,  I was so weak, I couldn't  stand to take a shower or lift my arms to brush my hair. I lost half my hair, had hyperpigmentation, and extreme salt cravings. I had several adrenal crisises during that time in which I was hospitalized but it was often blamed on "poor eating habits". I think people thought I had an eating disorder. I was a vegetarian at the time, so one ER Doctor actually told me that my problem was just that I needed to eat a turkey sandwich. Finally, I was placed in the ICU for low blood pressure (70/30). It was so low and I was so malnourished that they had to use an infant blood pressure cuff to find my bp. The ICU Doctor finally listened to my slurry of symptoms and did the right tests. I got the dx of Addison's and was honestly relieved just to have an answer. 

Over the years I discovered paleo and the benefits of that lifestyle to improving symptoms associated with autoimmune diseases. I did a few whole30's and then was mostly paleo for a few years. I did do AIP for one month. It was a huge challenge mainly because of my love of spices and tomato-y things. I honestly didn't notice any improvement in my symptoms, but I don't think one month is long enough to make a difference as far as sustained healing goes. I also didn't do well reintroducing food. I was so sick of doing it that I just pretty much went right back to regular paleo.

honestly for me doing paleo is all about trying to feel great and be healthy. Since I have multiple autoimmune diseases I'm hoping to prevent future development of more of them. Doing paleo will never cure my Addison's (my adrenals are shrunk to hardly existing and they'll never grow back) and if my meds are properly balanced, I feel pretty good. Personally, I don't have a goal of taking less replacement steroids because i take as much as needed to feel right. Too little is more detrimental than a little too much. Us addisonians need steroid to live and for our organs to function. I have been at the right dose for my body and activity level for many years. 

My reason for popping onto this forum is that for a few years now - since becoming pregnant with my now 18 month old- I have been off paleo. I had extreme morning sickness while pregnant and could only stomach crap foods like ramen noodles. Now every time I try to go back on I feel really icky for the first few weeks. I'm on day 6 of paleo now and I feel awful. I don't think its just the normal detox symptoms or the "low-carb flu." I feel constantly under-replaced with my steroid.. Like I'm not taking it all all, even though I've upped my dose. I've got heart palpitations, shortness of breath, weakness, etc.. Everything I felt when I was sick prior to diagnosis. I know that my body will adjust eventually, but if I knew the reason why this was happening, maybe I could do something to feel better. It's also really hard to stay motivated when you feel like total crap.

Have any other Addisonians experienced this when starting paleo or AIP or a whole30? It's really hard to find other people with AI out there who do paleo, so just putting out some feelers.

And I just want to echo the poster who noted that Addison's disease is NOT adrenal fatigue. Addison's is a rare, potentially life-threatening disease if not treated with replacement cortisol. It is a permanent, non-reversible disease that is all together debilitating when not medicated properly. A person could not simply have a "bout" of Addison's, although I'm sure that is possible with adrenal fatigue.. Just two TOTALLY different things. 

Thanks!

[Lazybonesjones]

Hey OceanViewInMN,

Thanks for your reply and sharing your story. It sounds similar to mine, except I don't have the thyroid problems. I have however been diagnosed with something called Ehlers Danlos Syndrome which is a genetic disorder. 

Unfortunately for me, I was over replaced. I finally got someone to agree to test my cortisol levels and they were off the charts high. I am now in the slow and very uncomfortable process of reducing my meds to a dose that is right for me, with frequent re testing. 

I haven't had a baby, but I'm having similar experiences trying to go back paleo. I attempted a Whole30 in September, but I quit half way through. I just felt so nauseous all the time. I tried cutting out eggs and nightshades but it didn't help. I felt so tired and crappy and sick and it put me off meat for a few months. I was a vegetarian a long time ago and from the middle of September until the end of December I followed that lifestyle again. It's worth noting that I have an allergy to both wheat and a protein found in dairy, so it's not exactly easy to be a vegetarian, it's much easier to be paleo. But once I started eating rice and carby foods again my energy went up. Although I think not eating meat after a while made it go down. 

Only recently have I started wanting to eat meat again and I'm taking it slow. Over the New Years weekend I went away and was not in charge of most of the food. A lot of the meals were very meat heavy and I felt sick all weekend. I can tolerate chicken and fish right now and some eggs but any beef, pork, venison, bison, etc makes my stomach hurt. I'm hoping to reintroduce them though as I have a freezer full of farm fresh bacon and venison from my bf's hunting trip that I don't want to waste. If I don't eat something carby I feel like I could fall asleep at any moment. 

Anyways, I don't know why I feel this way, and I don't know if it's Addison's related or not. I thought it might be from tapering down my meds but when I stopped eating Paleo I felt better. I want to try it again though because previously being on a Whole30 was the best I ever felt, especially when you could add in potatoes. I think starting Monday I'm going to try again, lots of potatoes and avoiding what I know hurts my stomach.  I hope this reply made sense, and I hope you feel better soon! 

[MAOMAW]

 I have Addison since 8 years. I went on AIP in November 2016 and have stayed on that challenging diet since. What first happened after two weeks was a dramatic and unwanted weight loss accompanied by Addison symptoms of weakness, low blood pressure and breathlessness. I then found out that with so little carbohydrate intake (resulting from the removal of all grains, dairy, nuts, seeds and big portions of fruits), the body went into ketosis, producing its own glycogen through glycogenisis. The issue when you have Addison is that the glycogenisis requires cortisol to happen. So without knowing, I had been under-dosing for two weeks. Not wanting to increase my dose of hydro- and fludrocortison I started eating a bit more fruits (those with less fructose, such as papaya, passion fruit and berries) as well as more root vegetables (not potatoes). 

The result after 2,5 months is a significantly higher metabolism, feeling Energized most of the day. It is still two early to try and lower the medication doses. I expect the adrenal glands will need another 3-6 months to have a chance at healing. But I really don't know.

I travel a lot and thereby eat out. That's the real challenge. I behave like a freak in restaurants. My friends are the other challenge, not being supportive and thinking I am just hysterical with my socially incompatible diet. In an ideal world I would like to lock myself in a covent or so and just have AiP compatible food delivered for 6 months :).

I don't believe that too tough training is good for the gut health. Regular average intensity is better. I do yoga everyday and it boosts engery.

I hope this input helps in someway.