Lazybonesjones Posted January 12, 2014 Share Posted January 12, 2014 After much googling the internet in General, and searching the forums, I still haven't been able to find anyone else who has Addison's Disease (not just adrenal fatigue) who can say what experiences they've had doing a Whole30 or an AIP. Also, I have trouble with stamina and my weight, as do a lot of people with Addison's apparently, and I'm hoping that there is someone out there who has overcome this and can give me advice. I'd like to be fit and healthy and strong, not chubby and tired and weak. But it seems 10x harder for me to do than an average person. Doctors of course are no help. They put me in high doses of meds that have side effects including gaining weight and being tired, then tell me to just eat right and work out. When I say that there must be a more natural way to help reduce my symptoms or a different way to take medication they say they don't think so. I understand that my medical condition causes way more than adrenal fatigue and that I will always need medication. I just think that I also should be able to help myself feel better. Link to comment Share on other sites More sharing options...
Lazybonesjones Posted January 14, 2014 Author Share Posted January 14, 2014 Guess I'm on my own with this one. That's ok. I won't give up this time. Link to comment Share on other sites More sharing options...
Tina R Posted January 14, 2014 Share Posted January 14, 2014 Hang in there. I don't know anything about Addison's Disease so I have no idea if the Whole30 will help you. I have had some of my own issues and have found that gluten free and dairy free have helped somewhat. So far I am on day 22 and I haven't noticed anything different. I feel exactly the same as I did on day 1 except I think I have gained some weight. I think it is all a guessing game and we each have to figure this out on our own. So frustrating. I wish I could feel better so I know I am going in the right direction. I hope you feel better eating Paelo. Keep the Faith! Link to comment Share on other sites More sharing options...
Tallulah Wolf-Angel Posted January 16, 2014 Share Posted January 16, 2014 Sometimes Addison's can be caused by an auto-immune problem, so if I think it would be worth trying the AIP. Doing a Whole30 will teach you how to eat for maximum health, and that can only help in your quest to feel better. By supporting your body you will help it to reach the best health possible for you. Even if you must continue on harsh meds, you may find you require less of them. I have RA, and although I still am taking 2 yucky drugs for it, after completing a Whole90 AIP, the drugs no longer make me feel sick when I take them. I was also able to get completely off of prednisone, which I had been unable to do for the preceding 15 years. I say go for it! And good for you, for taking your healthcare into your own hands and looking for your own answers. Link to comment Share on other sites More sharing options...
Physibeth Posted January 16, 2014 Share Posted January 16, 2014 Have you seen a naturopath or just traditional doctors? I wish I had more to help you with but I don't know much about your condition. Link to comment Share on other sites More sharing options...
praxisproject Posted January 18, 2014 Share Posted January 18, 2014 Robb Wolf had a podcast where Addison's was discussed in relation to shift work, the topic was a lot to do with adrenal function. I think it was episode 184. Link to comment Share on other sites More sharing options...
Chaumbrielle Posted January 21, 2014 Share Posted January 21, 2014 I've got Addison's but this is my first Whole 30 and I am not doing the AIP. I am on day 18 and happy with the food choices and prep I've been doing, but realizing that I may have to try some more elimination from the overall diet. I have hives as well daily (also auto-immune - Chronic Idiopathic urticaria) and while they seemed to reduce initially they are getting worse as I get more confident with my cooking and food choices. I've lost weight but I'm not noticing the energy - in fact I still feel like I'm about to fall asleep in the car for my drive to and from work. So not much help, but would be interested in hearing how it goes for you. But I'm not under any illusions that I'll get rid of my steroids for this, but I'm hopeful to get some of the other conditions under control. Link to comment Share on other sites More sharing options...
xkandakex Posted March 18, 2014 Share Posted March 18, 2014 Did you end up going through with the entire thirty days? I have Addison's and was wondering the same thing as you, if it helps. I also have Celiac so I've already been gluten free for a while. It helped a little but it hasn't been enough to get rid of all my Celiac-related symptoms, and hasn't really done much of anything for my Addison's. I'm currently on day two and finding it very difficult to essentially force myself to eat three meals a day...the loss of appetite caused by Addison's has made me lose weight as it is - about 35 lbs in a month and a half, then less quickly but steadily after that, but just from malnutrition and consistent low calories. It's pretty hard to exercise at all, as I'm sure you know. I'm hoping more than anything this may help with fatigue so I can start exercising again. Please let me know if this helped you at all. Link to comment Share on other sites More sharing options...
Lazybonesjones Posted March 19, 2014 Author Share Posted March 19, 2014 Sorry, I forgot about this post. I have not seen a naturopath. It does help. But most of the information I can find online seems to be more related to Adrenal Fatigue which is not at all the same thing. Are you on medication for your Addison's? In my experience, and talking to others with Addison's, the medication should make you gain weight..part of my problem. Before I was diagnosed I was very very thin and had trouble eating even one meal a day. Link to comment Share on other sites More sharing options...
Lazybonesjones Posted March 19, 2014 Author Share Posted March 19, 2014 Sorry, I forgot about this post. I have not seen a naturopath. Most of the information I can find online seems to be more related to Adrenal Fatigue which is not at all the same thing. Are you on medication for your Addison's? In my experience, and talking to others with Addison's, the medication should make you gain weight..part of my problem. Before I was diagnosed I was very very thin and had trouble eating even one meal a day. They're also testing me for Celiac, apparently the two existing together is very common. I did find it helped with my fatigue. Because my meds made me gain weight I went through a phase where I took much less than I was perscibed. I did lose weight but I was also basically useless because I felt so crappy. So now I take more meds and I did find that the first week of the whole30 was awful. But once you get used to it, it's great. How long ago were you diagnosed? I'm sorry this post is all over the place. I started a new Whole30 after a trip and terrible eating and drinking so I'm having carb flu! Link to comment Share on other sites More sharing options...
Tina R Posted March 19, 2014 Share Posted March 19, 2014 Here is another forum started by someone with Addison's Disease. http://forum.whole9life.com/topic/17583-concerta-munchies/. Link to comment Share on other sites More sharing options...
Lazybonesjones Posted March 19, 2014 Author Share Posted March 19, 2014 That's me! Same person lol Link to comment Share on other sites More sharing options...
Tina R Posted March 19, 2014 Share Posted March 19, 2014 That's me! Same person lol Too funny. Link to comment Share on other sites More sharing options...
xkandakex Posted March 19, 2014 Share Posted March 19, 2014 Sorry, I forgot about this post. I have not seen a naturopath. Most of the information I can find online seems to be more related to Adrenal Fatigue which is not at all the same thing. Are you on medication for your Addison's? In my experience, and talking to others with Addison's, the medication should make you gain weight..part of my problem. Before I was diagnosed I was very very thin and had trouble eating even one meal a day. They're also testing me for Celiac, apparently the two existing together is very common. I did find it helped with my fatigue. Because my meds made me gain weight I went through a phase where I took much less than I was perscibed. I did lose weight but I was also basically useless because I felt so crappy. So now I take more meds and I did find that the first week of the whole30 was awful. But once you get used to it, it's great. How long ago were you diagnosed? I'm sorry this post is all over the place. I started a new Whole30 after a trip and terrible eating and drinking so I'm having carb flu! I was on medication when I was first diagnosed, but I recently moved across the country (Chicago to Denver), had to switch medical insurance/find a new doctor(s) and I didn't have any refills. Bad timing on everything, as I now have to wait about 30 days to get the refills I need. Otherwise everything is too flipping expensive. When I was consistently taking them I found I did gain back a small amount of weight - 5 lbs or so - then it just held steady. So I wasn't losing any more weight, but I wasn't really gaining either. I was diagnosed with Celiac about 7 months ago via blood test, and Addison's only three months ago. When my fatigue and weight loss had continued after treating the Celiac with diet change and seeing some improvement in my small intestine, my doctor became suspicious of another disease and ran me through the gamut. I went to an endo and was diagnosed with the Addison's. So that's where that's at. Lucky (?) for me I was pretty fat before the Addison's started affecting me badly, so losing the ~40 lbs hasn't put me in underweight status. Both disorders literally hit me like a ton of bricks over the period of about a year...I'm hoping this lifestyle change can help me get through this no-meds, no doctor waiting period and perhaps improve my conditions enough to where when I do finally get to see my new doctor I can be re-evaluated. Link to comment Share on other sites More sharing options...
praxisproject Posted March 20, 2014 Share Posted March 20, 2014 I'm not sure if there are any, but Chris Kresser and Rob Wolf might have some kind of Addison's information. If there isn't any, they might be good people to ask some questions of, see if they'll do a blog post. You won't be the only one asking Link to comment Share on other sites More sharing options...
Lazybonesjones Posted March 20, 2014 Author Share Posted March 20, 2014 I believe Robb Wolf does have a post about it. Or a podcast. In regards to your medication, I live in Canada so it's a very different situation for me, however from my experience and what I was told by my drs is that no person with Addison's can go without medication especially for 30 days so if I were you I'd be really careful. Did they tell you what caused it or if it's primary or secondary Addison's? I was diagnosed when I was 18, and I'm 30 now. When I was diagnosed I was days away from being in a coma, and I was too weak to stand for more than a minute. I also weighed only 107 lbs (at 6 feet tall that was too skinny I looked awful!) And had a lot of the hyper pigmentation. Now I struggle with hypoglycemia as well as low iron and am being tested for Celiac. The low blood sugar and iron are managed through what I eat, usually. And that is the goal of me doing the Whole30. I also have ADHD and I'm currently struggling with that and those meds but that's a different topic. I think the Whole30 will help you, but I also think that your medication is necessary and that 30 days is too long to go without medication. I'm not a doctor but I know when I lowered mine drastically I became really sick and was hospitalized. What medications do they have you on? Did they prescribe you an emergency solucortef injection? Link to comment Share on other sites More sharing options...
Chaumbrielle Posted April 13, 2014 Share Posted April 13, 2014 I guess this forum doesn't tell you when people reply so I lost this thread. I have Primary Addison's and I'm on HC 22.5 mg a day taken physiologically throughout the day (4x) Fludrocortisone I'm high on .3 mg per day. I also have Ehlers Danlos which causes a blood flow/volume issue so I have super low blood pressure and combined with the Addison's, and I also take synthroid for hashimoto's thyroid. I just completed my 2nd round of whole 30 - ended on Thursday (yay me!) What I've noticed is that I was able to go down just slightly with HR (only at 2.5 down was at 25 mg for normal dose) and I can fluctuate a little more with the Florinef but I notice dizziness pretty quickly and go back up rather than take more HC. I lost about 12 lbs on my first round in January, and my hives stopped on day 28. After that I ate whole 30 about 80% of the time, but had my daughters birthday with cake and ice cream and ended up with no breaks on a sugar slide. Once I started getting itchy again I got scared that I would get the hives back so I started again in mid March. I lost a little more, nowhere near what I did the first time, but I haven't seemed to need the AIP and I really don't want to because I eat so many eggs,curry and so many of the spices not allowed, I don't know how I would give all that up. I will do labs next week so I'll do a full set of thryoid labs, so I'll be interested to see if anything has changed there. As far as night time eating, for me it's definitely a habit that I need to break, it's not hunger. so it's up to me to control it. Good luck to you! Link to comment Share on other sites More sharing options...
praxisproject Posted April 16, 2014 Share Posted April 16, 2014 If you want to get updates on the Topic, up the top is a button Follow this topic Link to comment Share on other sites More sharing options...
Coconuut Posted April 23, 2014 Share Posted April 23, 2014 Hi, I too have Ehlers Danlos with dysautonomia, low BP, orthostatic hypotension (probably POTS, but haven't had the tests yet), some mast cell issues (typical of EDS pts) and ADHD. Im also often hypoglycemic. (all these things make me sound like a disaster, but im not-- or at least do t think of myself that way). My symptoms tend to become exacerbated in the Spring with pressure headaches and devastating brain fog I think as the results of Oregon spring storms and exceeding my allergen load/threshold. I'm so fed up with the brain fog! It has cost me so much. I teach middle school and the job asks more of me than I am able to give when I'm so worn out by the last bell and forever unable to string two thoughts together. I'm on day 2 and feeling great. I'm hopeful i continue to feel well and stable as I keep going, and think I have a fighting chance since I'm already pretty Paleo (GF, etcetera ). The main dietary problem for me is sugar; I eat too many sweets and my blood sugar is all over the place. I'm happy to hear that Chaumbrielle is finding relief with Whole 30. For me, this is a last ditch effort before I pursue more medication (beyond my welbutrin and adderall) or abandon my career. Link to comment Share on other sites More sharing options...
Lazybonesjones Posted May 11, 2014 Author Share Posted May 11, 2014 I'm really interested to see if anyone with Addison's did an AIP. I've googled it to no end but I can't find anything. I love all of the things you can't have on that protocol, the spices, the tomatoes, the peppers. It would be so hard to give all of it up, especially when it's already hard to give up gluten, sugar, diary, legumes etc. I know if the trade off is much better help it would be worth it, but from what I can find everywhere Addison's doesn't seem to be a typical autoimmune disorder with a lot of inflammation. Although I had a conversation with my friend yesterday about it and she was saying that maybe it's one of those things, like when I was first diagnosed, and you're so used to feeling bad all the time that you don't notice until you start feeling good. I'm interested in starting it, and I don't want to be a whiny baby, but I'm also on a realllly tight budget right now and everything in my house I basically can't have on it. So, maybe once I use up all my tomatoes and peppers and stuff I'll give it a try. I do notice that when I don't follow Whole30 I'm itchy basically the time. Especially on my lower body. I'm not sure what the culprit is, I'm assuming it's gluten since I don't typically eat soy or legumes or dairy anyways. I also have an extremely hard time losing weight. It's very discouraging, especially when Doctors tell you that the answer is just eating right and getting exercise. So I'm over here busting my butt at bootcamp and getting up at 5 am to do burpees and have a reputation for being "crazy" for my healthy food and I lose maybe 2lbs and it comes back right away. I know that this program isn't for weight loss, but I'm starting to think that it must be something I'm eating or not eating that's affecting me and that's why I'm thinking of the AIP. Link to comment Share on other sites More sharing options...
EatTrainClean Posted May 11, 2014 Share Posted May 11, 2014 Lazybonesjones - Hey, I think your username is great, however ironic it may be (not sure if that was the joke!) Anyway, there is a lot you can do about Addison's. Here is a pretty good write up from Robb Wolf's site, and it was actually written by Diane from Balanced Bites: http://robbwolf.com/2012/04/09/real-deal-adrenal-fatigue/ In my "n=1", I've come very close to Addison's disease, if not having it (never went to a doctor) on several occasions. Rest, eating well, and not expecting to 'feel better' for quite a while are what you're dealing with. And Addison's is usually lifelong, medication-wise. I know it can be a bummer, but eating well is one of the BEST things you can do. I would minimize exercise to 'effective, but not stressful'. Sleep and eating great are your best actions here! I would try the AIP, you have nothing to lose. It definitely sounds like you have some severe food sensitivities, so the best course of action is to pull that stuff out and give it some time. Hopefully this helps, Casey Link to comment Share on other sites More sharing options...
jennor Posted May 12, 2014 Share Posted May 12, 2014 EatTrainClean - Addison's is definately not Adreal Fatigue! Addisons disease is a very serious disease where you are dependent on external cortisone to replace endogenous cortisol. It is lethal if not medicated! Adrenal Fatigue on the other hand is not a medical diagnosis, it is the unproven belief that a collection of symtoms are caused by poor adrenal function. Not saying you didn't have a hard time and didn't feel well, just saying that it wasn't caused by "a bout of Addison's". Link to comment Share on other sites More sharing options...
praxisproject Posted May 19, 2014 Share Posted May 19, 2014 Lazybonesjones - I don't have Addison's, but I have a big problem with gluten and cannot lose any weight if I'm eating it. If the AIP is too much right now, you can try cutting out single items. Some people do better without eggs, egg whites or non-organic eggs, others it's nightshades. I've reduced both my eggs and nightshades, but not given them up. I tried without completely, but reducing the volume was best for me. I've also found I don't process B12 and B9 properly (gene test), so all the blood tests saying my levels were fine, were actually false from a diagnosis point of view. The tests are completely invalid for me. Link to comment Share on other sites More sharing options...
Coffeeandshoes Posted September 25, 2015 Share Posted September 25, 2015 Old Thread but wondering if you did the AIP? I struggle, with the AIP. And Whole 30 for that matter, I do the 30 days and then get lost in the reintroductions. I have the beginning stages of Addisons, why do I say that? the autio immune test and the cortisol tests both off, and I dont' want to admit i'll be on HC for the rest fo my life. --So I was fine two years ago, or so I thought until I figured out the bouts with what I thought were flu were actually Addison's ;( Link to comment Share on other sites More sharing options...
praxisproject Posted September 26, 2015 Share Posted September 26, 2015 Old Thread but wondering if you did the AIP? I struggle, with the AIP. And Whole 30 for that matter, I do the 30 days and then get lost in the reintroductions. I have the beginning stages of Addisons, why do I say that? the autio immune test and the cortisol tests both off, and I dont' want to admit i'll be on HC for the rest fo my life. --So I was fine two years ago, or so I thought until I figured out the bouts with what I thought were flu were actually Addison's ;( Where does it go wrong for you during reintroductions? Do you feel better on AIP? Link to comment Share on other sites More sharing options...
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