Comment

Comment by Robyn, Melb. Australia on February 6, 2013 at 11:08pm

I had time today to check out information relating to autoimmune disease so I could relate that to your discussion. I came across a website www.sarahwilson.com.au that describes this persons journey combating autoimmune disease. As it turns out I have recently ordered her book "I Quit Sugar" purely because I think I need to cut down sugar, and didn't realise this was the same author until I looked further through her website. While this isn't necessarily related to FFA (and FFA isn't mentioned) there seems to be some similarites about some of the symptoms everyone has talked about in these discussions and certainly links to theories about inflammation, gluten free and autoimmune disease. I thought you might like to take a look at the website as I found I could identify with it in regard to what's happening to my body at the moment. If you get a chance see what you think. Robyn

Comment by Judy on February 6, 2013 at 10:11pm

I also am following these discussions with interest. The gluten free diet is certainly worth a try but I need to wait a few weeks. I think breakfast is the easiest because there are lots of oat,rice &/or corn cereals, like Pam said.
I am studing the anti-inflamatory diet and stress relief as I
had a heart attack 6 yrs ago, have severe arthritis and was recently diagnosed with PTSD after finally seeking answers to past stress .... so sounds like I am falling apart (I really am not and I count my blessings that I am still pretty healthy) but my point is: stress & inflamation have been definitely a part of my life, so I agree with it affecting the auto-immune system.
There is lots out there about the anti-inflamatory diet, like Pam suggested Dr Weil and others - do a search. I do know it is very important to cut out white flours, rice, pasta (brown and whole grains are OK)and processed foods, especially sugars. Lots of fruits & veggies and I would think, Pam, that red white and even dark chocolate is good because they keep recommending them for a healthy heart. Also coffee and tea. It goes on & on.

Comment by PamW San Diego, CA, USA on February 6, 2013 at 8:52pm

If I can put my two cents in (two pence for the gals on the other side of the pond), it is not just gluten. We need to be following an anti inflammatory diet. Gluten is just one of the things in our diet that needs to be eliminated. Did any of you ever hear of Dr. Andrew Weil? He has a lot of info on anti inflammatory diets, because people with auto immune diseases have inflammation as a result of the attack on their bodies. My parents both had diabetes, my sister died from complications of Chrons disease and my twin has a horrible auto immune disease called pemphagus. Doctors have always said to all of them to cut stress because their conditions would be worse. When you are stressed, your body releases some hormone which over time can cause inflammation. So since we already are inflamed, we don't want to add foods that make it worse. Susanne, isn't red wine supposed to be ant inflammatory? Please say yes!

Anyway, people on another website with LPP all talk about the paleo diet, which to me sounds crazy. Some are real zealots about it. I asked my derm about being gluten free but he said there are no studies to prove that it helps. I don't know if that means it doesn't help or if it means there is no scientific proof it doesn't help. Doctors like data before they will commit.

I bought a gluten free cookbook, and my husband who is the cook in the house has tried a few things. Celia, for breakfast I eat a rice based or corn based cereal or Oatmeal. There are always eggs, too. Although some people say eggs are not good because they come from chickens that are fed from a feed that has gluten! You can go crazy or crazier depending on where you are at!

Comment by Susanne on February 6, 2013 at 7:26pm

Jules, what is the 5:2 fasting regimen? CJ- I wouldn't give up wine quite yet - and I have no intention of giving it up forever. Frankly, I think you need it when you're going about making such major changes. I do think it takes a bit more than three days off gluten. I've been off for just about a month. My skin has cleared up significantly. I had been getting these middle-aged breakouts, especially on my forehead. I used to have strange itching on the top of my shin, which is gone. Occasionally had some sore spots in my mouth. Gone. And my moods are much, much more even. That said, while my scalp inflammation is down - I don't seem to have the red bumps right now - there is still a bit of inflammation and soreness in a couple of spots. I do think I'm losing a bit less hair, I don't have unrealistic expectations that this will magically come to a screeching halt, but I'm trying to be hopeful.

Comment by Robyn, Melb. Australia on February 6, 2013 at 6:36pm

Hi ladies,
I'm reading with interest the comments about gluten free and particularly stress. When I had my first appointment 2 yrs ago with my specialist she asked me if I had experienced any particularly stressful events as she said it is reported stress can trigger the condition. Often we don't know how our bodies handle stress and I don't really think I have any more stress than some other people, however I had been going through some major life changes and situations the previous couple of years which I believe did create more stress than usual for me. My son also got married (which can be a stressful time one way or another). If I really think about perhaps a 5 year period before contracting FFA it was full of a lot of stressful events which are mostly part of life (including deaths in the family) that we often have no control over.
So maybe - if you put together emotional, environmental, hormonal and dietary stresses on our bodies they might impact on some people like ourselves by producing FFA. While this doesn't give us necessarily a treatment for cure it might give us some insight into changes we can make - like diet, that might help us. It sounds like some of you are having success with gluten free and in the last year I have noticed that milk products don't agree with me so I am trying lactose free milk etc. I think I'll try cutting down or out wheat also and see how that goes. Who knows it might help the hair condition too! Here's hoping. Love reading this conversation thanks to everyone for their ideas. Robyn

Comment by ElleMN, USA on February 6, 2013 at 6:18pm

For those curious about how a gluten free or dairy free diet could tie into FFA there is a book called "Autism Revolution" where a Harvard-trained doctor talks about the rapid rise of that disorder. Her theory is basically that Autism, and other autoimmune diseases, are a result of our bodies inability to handle the stresses of the modern world. Genes, nutrition, toxins, stresses all combine to overwhelm the system. Her advice is to cut out additives, pesticides, gluten, dairy, whatever you can handle in order to give your body a break and give it a chance to heal. It's an interesting read if any of you like to read anything you can get your hands on.

I have an appt with my dr here in Minnesota Feb 12. If anyone has questions for her I'd be happy to pass on any info.

Comment by Jules UK on February 6, 2013 at 10:30am

Hi Celia, I shop at Sainsburys and Waitrose. They both sell gluten free flour. Also, Sainsburys has a wide range of 'Free From' products, including sliced bread. But I do bake my own cakes and now bread too, and cook meals from scratch, so that gives me control over what is in our food. Breakfast is porridge oats with raisins, flaked almonds and cinnamon. It's like a pudding!
I think you covered what was on the questionnaire; it also asked about anti-ageing skin products and shampoos/condioners. X

Comment by Jules UK on February 6, 2013 at 10:09am

I started cutting out gluten 7 days ago and have found it surprisingly easy, although pizza bases with gluten free flour weren't too brilliant. Today, there is no discernable inflammation and hairloss is noticeably less - shower plug hole easier to clean basically! There may be a connection, but I'm still taking doxycycline. I've also been following the 5:2 fasting regimen for about 3 months which is supposed to switch the body into 'repair' mode.
I had a call from my homeopath just now, who excitedly said she is very hopeful she can help. I know there's no scientific proof behind homeopathy but she's an old family friend so I trust her. I do think taking a holistic approach makes sense.
Thank goodness for this forum! You ladies are so full of ideas. It enables us to feel that there's always something worth trying, even when the medics are so downbeat and fatalistic.

Comment by CJ- Christine from Ottawa Canada on February 6, 2013 at 9:52am

what physical changes have you seen. I just started 3 days ago and ( ever the impatient one) haven't seen any changes yet. My gut still hurts at night and I still have gas worthy of a lumberjack. I also cut out dairy the other day - which ironically is much harder -just to see if my stomach would improve.. I can't help feel like you - that its all connected. While there is no family history for autoimmune, I already have several myself and have finally caved and am trying the dietary approach. I haven't given up wine yet though.

Comment by Susanne on February 6, 2013 at 9:02am

I lost my mom to idiopathic pulmonary fibrosis almost three years ago. This is an autoimmune disease with unknown origin. Hence, "idiopathic", which in case you haven't seen this word before, means we don't know where in the world this comes from. It is a progressive scarification of the lungs and ultimately suffocates you. My sister and I took care of her during her final months and it is a terrible way to go. Why am I mentioning this here? Because autoimmune diseases might be hereditary, not the actual disease, but the propensity toward autoimmune disease. My mom's father died of Parkinson's (autoimmune). It has not been shown 100% that FFA is an autoimmune disease, but many believe it is and it certainly acts like one. In any case, what if what I inherited from my mother was actually a gluten intolerance which makes one susceptible to autoimmunity. What if? Apparently, people often get several autoimmune disorders and believe me, I have no desire to get IPF. There is not going to be a funded study on gluten intolerance. There is no money to be made from that and only studies involving drugs get proper funding and often physician support. Until someone figures out what drugs will magically cure this mess, I'm going gluten free to see if that helps. It may not. It may be too late, but I've been seeing physical changes in response to this diet and it's been only 3 1/2 weeks. I don't want to sound like a broken record, but I wanted to explain why I'm going down this path without a medical doctor's directive. My dermatologist at UNC hospitals knows I'm doing this and because she is smart enough and humble enough to admit she doesn't know if that has any connection, she supports my decision to pursue alternative medical advice as long as it does no harm.

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