Replies to This Discussion

Permalink Reply by DragonandFox on February 17, 2016 at 6:03pm

Hi Carol,

I find this diet fascinating. If you do it, please share the results. I assume regarding FFA, you won't really be able to share results with us until a few months on the diet.

Unfortunately, this diet would not not work for me. I suppose, if I was told, "do it or die"  I might, but, I don't eat meat and this diet eliminates way too many items I rely on for protein.

I'm interested to know if it could have an effect on our disease, but also, I'm curious about anyone who could follow it.

:)

Permalink Reply by CarolJ on February 17, 2016 at 9:30pm

I definitely think this diet will be very challenging. I'll let everyone know how it goes....if it goes. :)

Permalink Reply by Elsk on February 29, 2016 at 8:14pm

Hi,
I am doing this diet since the beginning of the year. I don't eat gluten, sugar, dairy, any tomatoes, eggplant, potatoes, beans, etc. No bad oils, mostly grass fed and pasture raised meat & eggs. I think the only thing I don't follow is spices... Sh, I also eat 85% dark chocolate once a week.

Unfortunately my hair line is still inflamated after 3 months of clobetasol and 2 months of the diet. However, I have to say I like it! It is surprisingly easy to follow, and you feel much healthier.

Permalink Reply by Mel on February 29, 2016 at 8:48pm

I am happy to see this post. When I was diagnosed last April I asked about this, but there was silence. I felt there was no one else with FFA trying the diet. I went on it immediately -- 100%. So that means you pretty much can't by any grab-and-go foods, canned soups, nothing that is quick to prepare without prep.

I stuck with it from May to December and "cheated" some over the holidays (chocolate).

I have no idea, exactly, if it is working, however I have some ideas ... Like Elsk, I do feel better!! People would ask me all the time how I feel and I would say, I felt fine before and I feel fine now, like nothing had changed. However, I realized that from time to time I always DID have stomach issues. Never instances where I could link it to certain foods. But constipation and bloating were an issue from time to time. On the diet, this NEVER happened. I say happened because for the past month I was traveling in India and Sri Lanka so I had to go OFF the diet -- eating spices and grains (rice) and wheat in India (naan), plus some dairy, seeds, nuts, etc. I have to say, my stomach is a mess now again. It's not Delhi Belly or anything like that. It's my old bloated tummy that I recall from BEFORE the AIP diet.

Anyway, I also saw, after just one meal on the airplane when I left back on Feb. 2 that I got a stomach and face rash immediately. So, while I always ate whatever I felt like, I am convinced food is an issue for me.

Anyway, to digress back to when I was on 100% (and I'm going BACK on AIP 100% starting tomorrow ...returned from Sri Lanka Saturday) .... I have read and listened to podcasts on the AIP site that the skin/hair is the last priority organ in the body. So, while those with other autoimmune conditions see improvement in 30 days to 3 months time, skin and hair conditions can take a year or more to see improvement. So that's why, having seen no changes, I kept at it...

BUT, after 5 months I saw two receded areas grow baby hairs. Those are at least 2 inches now, and have not fallen out. Yes, I do get some inflammation/redness and I think my month off has set me back a lot. The area seems inflamed again...So I'm going back to the diet.

Just trying to keep the faith that this will work. ... In fact, before I left on my trip my co-workers through me a goodbye party with ALL dishes AIP friendly. SO nice since I had slaved in the kitchen for months and months. This diet takes dedication, $ and time. But it could really work!!! :)

Permalink Reply by Mel on February 29, 2016 at 8:52pm

Sorry for the typos... they THREW me a party... (and you can't BUY packaged foods)..

One thing to add: I also put coconut oil on my scalp a lot at night. don't know if that helps calm it down.

I chose not to treat it with pills and only did one round of shots.

I also bought some hair loss green aryuvedic spray in Sri Lanka and will try that on my scalp, too.

I would love to hear how you all do on the diet. Remember, if you go 100% it is meant to be an elimination diet so eventually, once you see improvement, you can work foods back one at a time. This means that maybe pepper or tomatoes might not bother you. It helps me to remember that it's, hopefully, a temporary diet. Because it is extreme. ...I lost 15 pounds and cannot afford to lose ANY more. I think I gained some back in India.

Good luck to all who try AIP!!

Permalink Reply by CarolJ on February 29, 2016 at 10:34pm

Thankyou so much for your responses! I've been on the diet for only 1 week so not much to report here. It is very encouraging to hear that you (Mel) have seen improvement on the diet. I have been reading tons of stuff about the autoimmune processes in the body and wholeheartedly agree with the info you talk about. I can totally relate to your comment about not really feeling bad before, cuz I can't say I've had digestive issues other than the occassional constipation/bloat/diarrhea...nothing that ever needed medication to resolve. So I know it's going to be hard to be able to tell if the diet is working but we'll see. I'm encouraged now to stick with it! I've read it can take up to 3 years to repair the gut lining so I am hoping it wouldn't take that long but although it's not forever, it is a long time, I hope the diet will kind of just become automatic.

Also, reading older discussions on here, I came across some talk of essential oils and using them on the scalp. I researched some of that and rosemary oil has had very good responses in tests so I bought an EO mix of cedarwood/juniper/rosemary and just started using that. Will let you know how that goes!

I was put on clobetasol topical solution...only have used it for a couple weeks. Where I never really noticed any inflammation on my scalp I do think it has helped in the sense that it seems some "hyperkeratosis" is disappearing. Never had itching either so...

Sorry that was kind of long but it's nice to hear positive things especially about this diet!

Thanks for your responses! :)

Permalink Reply by Mel on March 1, 2016 at 9:38pm

Thank you, too! I have been literally obsessed with the diet! It's tough to get back to it this week since I'm just back from traveling. Batch cooking helps. Canned fish helps, too.

I also sometimes use castor oil mixed with rosemary oil on my scalp at night, but maybe because it feels cool on my head I more often use coconut oil. Let me know how this all goes...

Also, as for clobetesol I did do it twice, 1-2 weeks tops. But the second time I DID really TAPER. I read that is really important...so go off of it slowly. You can read about that in "The Paleo Approach" by Sarah Ballantyne. I don't own the book yet, but read it in the bookstore! It also says for hair problems steer clear of mangos.

Good luck with AIP. I may not check in often but I am cheering you on!

Permalink Reply by SJC on April 26, 2016 at 9:54pm

Carol,

I started AIP in April 2015 when diagnosed with FFA.  I also have Hashimoto's with a continually very high anti-body count.  My goal was to calm my immune system and lower my anitbody count.  This way of eating wasn't a big hardship as I have been gluten free and very low carb for about 5 years. I am fully dairy (except for raw dairy occasionally), grain and legume free, eat only grass fed meats and wild fish/seafood.   I've been able to add nightshades back into my diet in moderation.   Well, I do feel pretty darn good eating this way.  Some weird things that used to crop up such as mouth sores and bumps and crazy dry eczema-like skin on my hands and arms have disappeared.  So have my minor digestive issues.  I also had no illness or respiratory problems for the first winter/spring (even though my entire office was sick between December and March at least once - I used to pick up every illness that went around) in at least 3 years.  On the flip side, my thyroid antibodies continue to be high, in fact three months after changing my diet they doubled.  I was really disappointed.  Also a major hair shed started about 4 months into the diet and continued for 4 months.  This seems to point to the diet not calming my immune system.  My FFA has improved, yet it is due to finesteride and a couple of rounds of steroid pulses to stop the shed.  I'm now growing quite a bit of hair that I thought I would never get back.  I continue with AIP because I like this very healthy way of eating; it seems right for my peri-menopausal body, but I don't see it as a benefit for my autoimmune issues.  This is just my experience; mileage for others may vary, of course.  Wishing you the best of luck in your plight and hopefully you have great results from AIP.

Permalink Reply by Mel on April 26, 2016 at 10:47pm

That is so interesting SJC. I had a hair shed, too, but it was all over so I did not link it to FFA or AIP. I assume yours was FFA?? Was it frontal hair loss? At first I thought mine might be from too much Vitamin A because I added all that meat and a Zvitamin with a lot of A, but then I read about other people shedding from a brand of henna I was trying. When I stopped using it the shedding stopped.
I also feel better on the diet although I struggle with getting full enough sometimes and keeping energy up.

Permalink Reply by SJC on April 26, 2016 at 11:12pm

Mel,

The shed was frontal, especially at the left and right corners of my forehead. I was watching it recede daily.  Hair was all over my house.  I literally filled a brush in the morning, had a drain full when showering and then filled another brush in the evening.  I felt so helpless.  But, it was happening in other areas too (all over as you said), such as around my ears and quite a bit at my nape.  I lost a lot of the length that originated from the nape area. In addition, my derm thought perhaps I had a secondary form of alopecia, but we didn't biopsy a second time, only took a look under the scope.  The good news is that I've stopped shedding and I'm growing hair since being on finesteride for about 5 months. 

Permalink Reply by CarolJ on April 26, 2016 at 11:00pm

SJC

Thank you so much for your reply! I'm sorry to hear that this diet isn't doing everything for you that you hoped it would. Although it's encouraging to hear about the many things it is doing for you. I have now been on the diet for about 2 months. I guess in the very best case senario I would love to see hair growing back but in reality I'm just hoping to stop any more hair from falling out. At this point I can't tell one way or another since my hair loss has been very slow. I do think the diet may have helped with the inflammation and I feel the keratosis I had in the area is pretty much gone. Also, reddness and itching associated with rosacea has gone away. I had been using clobetasol but weaned almost off of it except for using it maybe 1 X per week although I feel it dries out my scalp when I do use it so I am planning on stopping it completely and see what happens. I definitely am going to keep up with this diet because, like you and the others, I feel so much healthier in general. I have a derm appointment in another month so it'll be interesting to see what the Dr. says, if he notices any difference. I will check back in and give an update. Again, thank you for the reply, it's so nice to hear about experiences first hand instead of getting information from google-ing everything....(although if I never googled anything I never would have found this site!) Very grateful to all here!

Carol

Permalink Reply by Mel on April 26, 2016 at 11:26pm

Nice to hear your experiences, CarolJ and SJC. So good to hear of your regrowth. I'm so afraid of the drugs but I'll have to think about finesteride. I have the slick line back at the front and it's been kind of enflamed too. It was doing good after months of the diet and I got off track after traveling in Feb. I intend to try again with AIP and I'm mostly back but not 100% and hoping that will make a difference. Now when I eat sugar or caffeine I immediately feel worse.

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