Paleo-AIP progress, four months on

Bacon wrapped apricots with sage

Back in September I started a pretty restrictive Paleo-AIP diet in the hopes to find some relief from several autoimmune diseases I suffer from. That meant I could no longer eat any grains (gluten or gluten-free), dairy, legumes, nightshades (tomato, potato, eggplant and peppers), eggs, seeds or nuts. In theory I should have also excluded alcohol, chocolate and coffee, but never did. (I'm a bit of a coffee drinking chocolate indulged wino it seems)

The main concern I heard from friends and family was that I would lose too much weight on the new diet. I'm thin as it is and have, when I've been unwell, come to look quite sickly when I lose a kilo or two.  They were worried that by excluding carbohydrates from my diet (something that happens quite naturally when you remove grain) that I wouldn't have any energy and would not maintain any fats.  I do have to admit that I have lost a few kilos since starting the diet, but my energy levels are an all-time high (just have a look at my other posts!) and even though I weigh a bit less I'm not looking sickly because of it. It's as if my body has found its ideal state.  I am also careful to make sure I'm eating enough healthy fruit and vegetables so I can maintain some kind of carbohydrate intake as well as fibre.

SCD & Paleo Vanilla Granola

Four months on and I'm still very very happy with the changes I've seen in my health.  I have more energy and less pain and swelling. I'm sticking to it!

I did fall off the waggon a few times, only to be reminded by my body, quite aggressively, that this diet is the best thing for me right now.

At Halloween I ate a load of Sera's candies and ended up with the worst pre-period acne I've had in years. That month the amount of refined, processed sugar I had consumed really messed with my hormone levels and triggered a big PCOS flare up. No more candies for me!

Then a few weeks back I made a spinach sformatino (eggs in the oven essentially) and ended up with terrible terrible stomach cramps from the cheese I added. Since I had experimented with hard cheeses and didn't have adverse reactions I decided to try out softer cheeses and it was a fail.

BLT Zucchini 'Pasta'

I'm still playing around with figuring out what I can and can't eat without getting sick.  This morning I had yogurt and haven't felt unwell but will have to wait to see if it triggers inflammation in my joints in the next few days.  It's a super-interesting process and I'm pleased to say I've reintroduced eggs and nuts without much trouble.

I've been cooking loads as well and would love to direct you to some of the best recipes I've been using over the past 4 months and some I've just discovered!

-Cauliflower Fried Rice from Mickey Prescott's cookbook Autoimmune-Paleo
I eat this at least 5 times a week. I like this version because of the turmeric and ginger but you can search for other versions on line. There are loads of options!

-SCD & Paleo Vanilla Granola from Danielle Against All Grain
I've only just recently whipped up my first batch of this stuff but breakfast tomorrow is going to be heavenly! Yum!

-Taco Lettuce Boats

-BLT Zucchini pasta from Ali at Inspiralized
This stuff is heaven sent and really sticks to your insides... I just leave out the tomato!

-Bacon wrapped apricots with sage

These are lovely appetisers for a party! You can do the same thing with prunes or perhaps figs wrapped with prosciutto!

-Lebanese Kebabs from A Clean Plate

Yum yummy Yum!

Since starting this foodventure I've been lucky to find how many foods I enjoy that I'd never even tasted in the past!  I can't believe I went 34 years without discovering pomegranate! I'm now in love with the fruit and eating it 3 times a week (while it's in season). 

I have a lot to be thankful to this diet for. If you're reading this and you also suffer from any sort of an autoimmune disease I suggest you run out right now and try it!  Oh, and get well soon!

♥ Jess

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A Letter from A Reader: PCOS

I got a mail today from a reader I thought I would share with you because maybe some of the info could be helpful. The following letter was translated and adapted from Italian:

Hi Jessicka... how are you? I am really enjoying your blog. The other day I read your posts about autoimmunity (I've read them all but don't know too much about this topic). I do, however, have first hand experience with PCOS which I have been battling for quite a few years now. I had been managing it with the birth-control pill but also suffer from high cholesterol and therefore the pill can be dangerous because of its' association with thrombosis. Without the pill my ovaries are a complete mess! I have high levels of the wrong, male hormones and I lose breast tissue as well as other typical problems with PCOS. I have seen many doctors without any concrete results or advice. They always suggested the BCP. I decided to start my own research as to an alternative. I found out that there is a medicine called Metformin that is used to treat diabetes to control insulin levels in the blood which has had some results in controlling PCOS as well. Since starting this medicine I have seen some changes and thought I would let you know about it too.... maybe it could be some help? You could talk with your doctor about it. How are you treating your PCOS? Did you have problems conceiving Sera? I don't ovulate... I think it will be very difficult for me to conceive when I'm ready to have a family. It's been two years since I have stopped taking the pill and haven't seen any signs of ovulation. I'm not actively searching for a pregnancy but would be very happy if one were to happen. Kisses to you and little Sera... sharing this with someone else who can understand is always useful.


I checked with the author if I could share this mail with you because I think that a lot of what she says and the questions that she asks could be helpful for someone else in the same situation.

Dear________,

PCOS is a very distressing Syndrome because it's not life threatening or debilitating but it is very alienating. Although it won't kill you or make you too sick to function, for a woman of child-bearing age, a diagnosis of PCOS is still something hard to digest. It means that you may not ever be able to conceive children and that if you can you will probably have a hard time doing so. It means you might not feel or look as feminine as you'd like to. In my case, my PCOS manifests itself in severe acne on my chin, unwanted excessive hair growth, a small breast, and extremely painful periods... all things that don't scream attractiveness. You can also feel alienated because seeing how PCOS is relatively common, the people who suffer from it are often overlooked by the medical community and the syndrome can be brushed off as insignificant. Doctors don't seem to be serious about finding a solution to a PCOS problem. It's frustrating and unfair. On top of that, telling a woman she may not be able to have children and that she's full of testosterone and there's nothing she can do about it except take potentially dangerous hormones is damaging to morale and can lead to all kinds of psychological problems. Sharing the burden of living with PCOS is a great way to counteract this and I'm very glad you wrote.

I have heard of the use of Metformin in PCOS treatment before. It seems that a lot of women are having good results with the drug. There has been some research linking PCOS with diferent types of diabetes and a mis-processing of Insulin, so that ma be why Metformin is successful. I'm not by any means an expert on the subject and due to my other medical issues try to avoid any pharmaceuticals in general. I will make sure to mention it to my doc at my next appointment however and see what he thinks.

I guess you can say I am currently 'treating' my PCOS with diet and careful monitoring. It has only been 4 months since I stopped taking the BCP myself but so far I haven't had any of the my usual symptoms except for irregular cycles. The diet I'm following calls for the elimination of all carbohydrates and instead consumption of good sources of protein, fat and fresh vegetables. Eliminating the carbs also eliminated huge fluctuations in your insulin levels throughout the day, so perhaps it's working much in the same way as the Metformin. You can read more about the diet here. In your case, if you decide to undertake a diet like this one I would suggest a cholesterol test a month or two after starting to make sure that your cholesterol is under control.


I have had PCOS for as long as I've been an adult and was told, based on my hormone blood tests, that I would not be able to have children without hormone therapy and infertility treatments. I was sure I wanted a child but didn't want to become a science experiment so I didn't start the treatments. Instead I decided to start getting to know my body better. I did research on fertility and PCOS and then registered for a website to help me track my cycles and fertility. You say that you don't ovulate. Do you know that for sure? I thought I didn't ovulate either until I joined Fertility Friend and started tracking my body temperature every morning as well as other fertility signs. I also purchased ovulation strips on line and used them whenever I saw a fluctuation in my body temperature. They're much cheaper than the pharmacy or supermarket brands. I wasn't hoping for much after what the doctors had said, but one day in May the strip came back with 2 pink marks, claiming I was ovulating! I couldn't believe it because it had been over 70 days since my last period... but who was I to doubt? Sera was conceived that morning.

When she was born she was 60 days overdue--- hahahaha.... that's a side note.

PCOS can be tricky because it's unpredictable... In my case my cycle was super long but then one day an egg got through. It might be the case in yours as well. Or it's possible that you find a doc who gives you just the right meds for a while until an egg gets through. Or you change your diet and an egg gets through. Who knows? Doctors certainly don't and it's easier for them to tell you it's impossible.


My advise to you would be to start getting to know your body... I still use Fertility Friend to track my cycles and signs/symptoms even though I'm not hoping for another pregnancy. It makes me feel more in control of things and helps me to keep an eye on my PCOS. I'd also recommend changing your diet to one that helps with your PCOS symptoms by eliminating aggravating foods for me AIP/Paleo sems to work. There's no cure for PCOS but it can be kept under control.

All the best,
Jess

PS. Here's a nice little article that I also mentioned yesterday that might be of some help.

Is the AIP paleo diet for me?

About two years ago my homoeopath suggested I go gluten-free as his MORA machine picked up an intolerance. I had had the slew of tests for Celiac disease repeatedly and they had all come up clear but he had me do a few genetic tests as well and it seems I carry the HLA-DQB1 *03:01, *03:02 markers that show a predisposition to the disease. Clearly, if someone has this sort of predisposition they do what they can to avoid it right?

Well, sometimes they don't. To prove to you how much of an idiot I am I will just tell you what I had for dinner last* night... Yes that's right. It's Italy and I had pasta.

I have gone gluten free on and off in the past few years but I feel like I've been off the diet more than I'm on it. A friend asked me the other day why I don't follow the diet if I know that eating gluten is slowly making me sick (gluten has also been proven a huge trigger for autoimmune diseases) and I tried to explain to her that I feel as if its the same reasons why smokers continue to smoke. Smokers enjoy smoking and I enjoy eating pasta but its deeper than that. Really addicted smokers have a psychological barrier to overcome if they really want to quit. They have to give up their identity and self-image as a 'smoker'.  I will have to give up my self-image as being normal and free to eat what I want.

Maybe it's time? 

Ive been doing research and i think that the reason why i may have come back to gluten in the past was because a gluten-free diet isn't for me. I just ended up eating loads of gluten free pasta and still feeling hungry. I hadn't changed my diet, I had simply removed one ingredient.  It always make me feel deprived cause the flavour wasn't there and I was trying to pretend it was. Eventually I would just cave in and eat an entire pizza.

Perhaps I need something Even more extreme than eliminating gluten to allow my body the rest it needs and to get used to not having that level of energy provided by carbohydrates.  I've become very interested in the autoimmune protocol paleo diet instead of just gluten free... It's the elimination of all grains without substitution coupled with the elimination of all foods that cause inflammation and allergic reactions in the body.  It sounds terrifying, but I'm thinking of giving it a shot.

I'm going to use this article, which you can find on the awsome PaleoMom site, as a guide in this new change and see if it helps me to feel any better. Then when I start to slowly introduce foods back into my system ill be able to feel what they're doing to me. I may even keep a food diary, which I've never done. I'm going to approach avoiding the foods they suggest to avoid the same way I approached quitting smoking myself eleven years ago. In the same way I said to myself 'just don't have a cigarette' ill have to say 'just don't order the pasta'.

Some reasons why I'm hoping the autoimmune protocol paleo diet may work for me:

-cutting out gluten means reducing the risk of having Celiac disease down the line

-avoiding nightshade foods and gluten should reduce swelling in my joints

-PCOS has recently been linked to forms of diabetes and insulin intolerance... carbohydrates  raise blood glucose levels and this diet eliminates all carbs

-research has shown that people with my blood type (0-) are at optimum health following a hunter-gatherers type diet of only meat and vegetables, but no grains

-removing these foods may help with my ulcerative colitis and bloating/pain after eating

-maybe forcing myself to eat more meat will help with my energy and iron levels.

Sounds like a pretty optimistic list!

I bought The Autoimmune Paleo Cookbook by Mickey Trescott online to help me with the new diet. It's in PDF format and so far really nice to look at and explains a lot.

I also bought some paleo-friendly (but not AIP friendly... one step at a time) flaxseed flour and had a really filling lunch by basically just mixing 2 tablespoons up with water, herbs and spices and then cooking it in a frypan with oiliveoil in the exact same way you would cook a scrambled egg.... It looked like a burger (being dark brown in colour) but was very delicious and even Sera loved it! "More flassseeed pleeeeeease!"

*by last night I mean the night before I first wrote this post... several days ago.

autoimmunity - part 3

advanced thrombotic microangiopathy: for something that almost killed me its rather beautiful!

I never intended for this to be a blog about medical conditions and I'm sorry for all of you faithful readers who come to see my crafting posts who have to put up with an occasional downer as well.

I didn't even expect to have to write a post on autoimmunity again for a little while. I know you're all dying to hear more about homeopathy and gluten free from my last post of the series but something unexpected came up this Wednesday which I think can help teach a super important, and in my case, life saving lesson to even the healthiest of my readers.

Here's the story:  I have always suffered from PCOS (polycistic ovaries syndrome) and have managed my symptoms successfully with the regular old birth control pill. There's much discussion as to the cause of PCOS and whether or not it's related to autoimmunity, but no one knows for sure. Regardless, since I've been taking the pill for about 20 years now (with a few brakes including a large one to allow for my little princess) for me it seemed something so natural, essential (for the PCOS symptoms) and irrelevant almost to the point of not mentioning it to doctors when I give my medical history.

When I was pregnant, I had a few extra tests done because of my autoimmunity to make sure that the pregnancy wouldn't be at risk for some as-ofyet unknown factors. I had some specific tests done which my immunologist assured me 'In your case shouldn't come back positive', but a few did... specifically the anticardiolipid antibodies and the lupus anticoagulant, which put together,  in most cases mean Antiphospholipid Syndrome.  Enough large words and links to Wikipedia.... In normal lingo that means my blood is thick and sticky and is very dangerous in pregnancy for miscarriage, stillbirths or lots of other nasty things that you don't want to hear when you're pregnant. I ran straight back to the doc with the results and was put on baby aspirin for the rest of the pregnancy with my levels being monitored closely and regular ultrasounds to make sure the baby was ok.  4 weeks before my due date I had to stop taking the aspirin (which increases the risk of hemorrhage during delivery) and in fact, Sera was born almost 2 weeks early and quite underweight for her gestational age.

I took my new baby home and after 40 days of injecting blood thinners to make sure that I didn't have strange clotting in my uterus never thought about Antiphospholipid Syndrome, or APS, again.

Until Wednesday; when, by chance I mentioned to my immunologist that I had had a abdominal ultrasound (for more fun autoimmune problems) and that all the technician had found was my PCOS which 'I already knew I had anyways and am controlling with the birth control pill' - I said.

I have never seen a doctor turn white. Especially not my doc, who I've known for five years now and who I pass most appointments joking around with.  He started leafing through my entire folder and repeating 'but I didn't know you were taking the pill... did I know? No, I didn't know... did I?'

Well, no he didn't... at least he didn't know I had restarted taking the pill about 4 months after Sera was born when the PCOS started to creep up again.  My gynaecologist prescribed it and since I didn't know much about Antiphospholipid Syndrome (nor do most people or doctors) didn't mention that to the gyno either... I didn't think it was something I had to mention.  I had always taking the pill before with no problems.

But it turns out there is a problem, a very serious one actually.  APS and oral contraceptives don't play nice together at all apparently... they both thicken the blood and mixed can cause significant problems such as deep vein thrombosis, stroke, heart attack, and pumonary embolism (what fun to hear... imagine me now in the doc's office and the colour of my face!)  The immunologist ran upstairs to the Thrombosis clinique with my data and came back with a game-plan:  stop taking the pill immediately, get these and tese and these blood tests (13 samples!) and when you have the results we'll figure out what to do about the PCOS and if you need more treatment for the APS.

Dear readers,  I have always had APS (or at least as long as y other autoimmune problems) so we're talking about roughly 13-20 years of walking around with a super-high risk of the above-mentioned killers and not knowing about it.  I'm having a hard time getting my mind around it, but am grateful and thankful to now know. I had been considering postponing the appointment on Wednesday but am so happy I went. The simple conversation with my doc may have saved my life and I'm lucky to have had it.

Even after stopping the pill I will have to learn more about APS and how to scan myself for warning signs of the potential problems related to it.  I noticed a bruise on my leg this morning which I would have normally not thought twice about, but will be keeping a close eye on it (although I think that it would be too coincidentaly to have a DVT 2 days after learning that you have a syndrome that created DVTs... there would have to be some strange powers at work).

The biggest lesson I learnt from the experience is that you should tell your doctor EVERYTHING... even the things you think are not important, even the things that you think that you already told them. 

not me talking with not my doctor

Had I told my immunologist back in 2011 that I was thinking of taking the pill again or had started to take it then he would have told me not to and that I couldn't and had I told my gynaecologist that I had APS (having understood its' significance) there's no way he would have prescribed me the pill... we would have had to find a new way to control the PCOS.  For as much as I am an expert on my health and have learnt to be in these past 13 years, I'm not a full expert and will need to learn to collaborate more with my docs and to live with a new full-disclosure at the risk of being banal policy.  For in as many times as I've filled out a form and they've asked what medications I take and I've written 'the contraceptive pill' and they're told me it's irrelevant, in my case it was VERY relevant this info and I had erroneously let myself be convinced otherwise.

The second biggest lesson I learnt is that when you are diagnosed with something, or prescribed something you need to go and find out everything you can about that illness or medication, then you have to make sure you ask questions... over and over.  Sometimes doctors don't know what they're doing.

I'm going to have to find out if there are alternatives which don't cause thrombosis that can help with my PCOS.  I'm not looking forward to the symptoms coming back and the pain that goes with them.  The thrombosis clinic mentioned one drug that may work and has fewer risks but I haven't looked into it yet as I have to wait for my blood results on the 19th.  I'm a bit worried about what the future holds for me with regards to that but as I mentioned before there were other times I lived with the symptoms and I'm sure I can do it again.

As all of my medical posts, this was a long and heavy one, but I'm sure that you understand it's been a strange and heavy few days for me.  If anyone out there is going through something similar I'd love to exchange ideas or tell you a bit more about my experiences.

Thanks for reading!