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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.

Comment by CJ- Christine from Ottawa Canada on February 5, 2013 at 10:55pm

Hi all, I just read the german article ( I`m german by background) and it is depressing. It sounds as though, based on this one case, where they tried everything including cyclosporine and thalidomide, the disease just carried on. There was a reference to our own Dr. Donovan`s research where there was some progress made with eyebrows via steroid injections.

I`m going to the American Academy of Dermatology meeting next month and hope that there will be some sessions there I can attend and see if there is anything new.... and more hopeful

Comment by PamW San Diego, CA, USA on February 5, 2013 at 8:41pm

Good luck, Heidi! Could you ask about the anti-fungal issue that was raised the other day? one of the ladies is being prescribed an anti fungal med. Never heard of that before. Tell the doc the whole group from continent to continent says thanks!

Comment by Heidi Short UK on February 5, 2013 at 1:10pm

Hi everyone I'm glad your day went well Debs, You look fab in your picture!I'm going to see my derm tomorrow is there any questions you would like me to ask. I think I will ask about diet, also the length of time I can safely be on my medications and if she thinks it is heriditary, oh and is it auto amune or not! Any other questions let me know.

Comment by Liz on February 5, 2013 at 10:01am

Ok. Thank you :o) xx

Comment by Jules UK on February 5, 2013 at 6:09am

Hi Liz. I saw Dr Harries himself. I think it was Celia who said that he likes to see FFA ladies because it's a particular interest of his. To be honest, he didn't say anything I hadn't already learnt on this forum but it's good to be "in the loop" if any research goes ahead.
Can I ask if anyone who's progressed to wigs is able to sleep in them? X

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