Comment

Comment by Heidi Short UK on February 7, 2013 at 12:53pm

Rebecca I too lost my dad 5 years ago, he had mesotheleoma (aspestoses)it was horrific what he went through. He was fit with no health problems in the June and by xmas he had passed away. I was completly stressed out. I did alot of the caring for him as my mum had passed away 7 years previous I was completley helpless to it, especially the last few weeks. He was in agony the pain releif wasn't working and the doctors wouldn't sedate him so, I can feel myself getting angry writing about, I have never been so stessed in all of my life!
Iam also a cook and I have a sweet tooth, although I do cook healthy meals if there is cake or better still chocolate about I'm the first in the que!

Comment by Heidi Short UK on February 7, 2013 at 12:40pm

I'm really sorry Celia and Pam I looked at the website before I left for work in the morning and there was no reply about any questions so I didn't ask your specific ones. However, my own list I asked about extra vitamins and she said a multivitamin with minerals every day, she did say my hair looked in good condition and therefore she didin't think I was lacking in anything! I asked about diet and she had nothing conclusive to say. My measurements had not increased since last time and she said I didn't need to use dermovate on the sides of my hair line now as the inflamation was not visable there but to continue with the middle section.I asked about the rash under the skin on my forehead and she said she had another FFA sufferer who had a significant rash all over her face so it might be connected.She also said that it isn't a true auto amune disease as it works differently to others, she went on to explain but lost me completely!!! I was telling her about my other problem of very itchy salivary glands when I eat certain foods and that the the antihistamine tablets don't seem to work, she told me I should take 3 or 4 a day for a month to see if this stops it, once I have a month free from it start to reduce it!!! All these things do add up to be what we put into our bodies.
When I was first diagnosed and I was in complete panic I was trying everything. I went to a very good health shop in Exeter where they had a number of different holistic and alternative practitioners, but at the time I was on a certain acid /alkaline diet, I was having reflexology and rhaki and I was using philip kingsley products, so I didn't think I should try anything else. But now I might pop back to see what is available!
I did say to her about this website and if any questionaire etc or data is required she would have 30+ ladies wanting to help!

Comment by Susanne on February 7, 2013 at 11:06am

Hi Alice - you're in Durham! Wow. I'm new to this and am not sure how the friend request thing works here, but I'll sort it out. Who's your dermatologist?

Comment by Alice on February 7, 2013 at 10:59am

Susanne,

I have been lurking in this discussion for a while and just joined today. I am also in Durham w/ FFA and sent you a friend request. I hope to chat w/ you soon.

Alice

Comment by ElleMN, USA on February 7, 2013 at 10:24am

Robyn I completely agree. The New York Times published a great article called "Is Sugar Toxic."

http://www.nytimes.com/2011/04/17/magazine/mag-17Sugar-t.html?pagew...

Here's a link if you want to read it. I'm going to reread it now!

Are any of you taking Zyrtec or other allergy meds? Just curious. I have been for years and it occurred to me that maybe it's messing with my immune system ever so slightly.

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

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