Replies to This Discussion

Permalink Reply by sallylwess on April 10, 2017 at 3:04pm

Thank you for sharing.  I can also make a good argument that many of my hair loss problems and gut problems began at the same time.  I personally believe the two are related.  I have IBS and FFA and I am also pre-diabetic.  (Also diagnosed when around the time the hair loss started.)  I come from a long line of women with autoimmune disease.  I personally believe this all starts in the gut.  

Permalink Reply by Christi Q. on April 10, 2017 at 3:12pm

I don't have any of these problems (other than FFA), but I do love gluten foods. I could eat nothing buy grains, breads, oats, etc and be happy. Probably should cut way back on these products and see if it makes any difference?

Permalink Reply by jmh485 on April 10, 2017 at 5:32pm

I am coeliac, diagnosed 9 years before FFA. Also have fructose malabsoption. This is why I always considered my FFA autoimmune related as I knew my immune system was prone to overactivity. I know that stress is the major trigger as my coeliac and FFA diagnoses were both preceded by major stressful incidents.

My advice is that if you can tolerate gluten DON'T cut it out as there are nutrients the body does need from these grains. A gluten free diet is often incorrectly viewed as a healthy or weight-loss diet. Reduce processed sugars if you're going to cut out anything.

Thanks for sharing this. This news is stranglely satisfying!

Permalink Reply by SandyA on April 10, 2017 at 9:34pm

Yep...count me among those with known gut problems and other autoimmune conditions.

I have found through my own experimentation and trial/error that some additional symptoms apart from the FFA I had been experiencing (that, oddly enough, closely mimic celiac disease) are directly related to a strange protein intolerence. I also am somewhat affected by large amount of gluten (I can't tolerate whole wheat foods at all anymore) although not to the same degree as some specific protein-based foods.

Still....I am finding diet is imperative to controlling my most debilitating symptoms and could possibly be helping the FFA ones as well. I just can't say for certain since I've been focusing more on the non-FFA symtoms.

Permalink Reply by DeniseC on April 11, 2017 at 4:38am

I had lichen planus, which is an autoimmune condition - initially in my mouth, but then in my gut, both before FFA. And I still have all sorts of intolerances - as do my two sisters, my niece and my daughter. One of my sisters has psoriatic arthritis, which is an autoimmune condition, and my great niece had Kawasaki's, again autoimmune.

I wholeheartedly believe there is a link, and that it could be a genetic issue. My niece has psoriasis (another autoimmune condition) and IBS and saw a holistic/integrated medical practitioner (Julian Kenyon - cannot recommend him highly enough). He said both conditions were in fact symptoms of the one underlying problem - leaky gut. So toxins were being released into her system and she was reacting to them.

I am not necessarily saying FFA is the same - but it certainly makes intuitive sense to me that my body is reacting to a systemic problem and that it is a fundamental mistake to consider, and treat, individual aspects, such as the FFA, lichen planus and multiple allergies, as separate entities, when they could all be coming from the same root cause.

Diet is, I am sure, important, as is general taking care and avoiding stress (says she, with a very demanding job and busy life!).

Permalink Reply by Minter on April 12, 2017 at 4:06am

Actually, I don't have any "gut" problems that I know of anyway, other then G.E.R.D., but thankfully it is controlled with medication and only flares up badly if I gain a few pounds or eat too much- but maybe that is my "gut" problem, I don't know.....

That is a very good point to raise, that dermatology is maybe not the way to go for FFA, it has to be something internal that is causing our own bodies to attack itself, why or what, who knows.  Also, thanks for posting the great link about Dr. Angela Christiano!

Permalink Reply by Airam-FFA on May 8, 2017 at 12:13am

Does anyone know of any research into FFA that suggests why the hair loss for FFA affects the front of the hairline? It seems strange that hairloss isn't all over the head.

I have wondered if my own FFA was triggered by stress and using the 'once a day' suntan lotions. This would explain loss of hair all over my body and the hair loss starting at my fringe - the rest of the hair on my head not being affected (as yet) as I didn't use the 'once a day' suntan lotion on my scalp.

Being an auto-immune issue related to gut issues is interesting. I have always eaten pretty healthily with lots of fruit and veg and limited processed foods. I also eat gluten products and hadn't thought that I might have an intolerance. I did cut out most carbs last year, before I was diagnosed with FFA, and this made losing a few kilos very easy. But I don't know if it would have helped any 'gut related' issues, as I didn't think that I had any.

I feel like my healthy life style and healthy body have let me down. This disease (I hate it that is is called a disease) is a complete mystery to me. I just want it to burn itself out quickly!

xOx

Permalink Reply by Leni on May 9, 2017 at 10:57pm

Definitely gut issues here! I think the leaky gut syndrome is a key factor along with genetic predisposition. I went to a homeopath about 8 years ago because of eyebrows falling out. She said I had gluten intolerance and leaky gut. I do feel better since going gluten free 8 years ago, but I think the damage was already done and in progress. Interesting enough she did a hair mineral analysis test on me and I did have high levels of bismuth. Makes me wonder. Perhaps the trigger for some could be the cosmetics.

I'm just getting tired of dealing with it. It would be nice to have answers and hope for a cure.

Having a bad week.

Anyone have dreams where the hair loss is out of control. Really brings me down.

Permalink Reply by Airam-FFA on May 10, 2017 at 12:55am

Hi Leni

I have those nightmares. Just want the loss to stop. I am able to hide the loss for the time being but my hairline is NOT stopping receding. It won't be many months before my fringe won't cover the loss anymore.

I saw a young woman on First Dates last night - she whipped off her wig and she looked stunning - in fact even better without her hair/wig. Having the confidence to do that is encouraging.

My scalp is itching more lately and I know that means more loss. O, that they find the answers and even a cure to reverse the scarring.

xOx

Permalink Reply by Leni on May 10, 2017 at 6:01pm

Quran-

I'm sorry to hear you think your hair loss is moving so rapidly. That must be beyond stressful. It's really so difficult to accept this disease and what it does to you. Really angers me.

Have you considered trying the AIP diet? It's incredibly difficult to do, but I was able to identify the foods that caused my scalp to itch. Currently its tomato, black pepper, nuts, all peppers, sometimes potatoes and some spices.

Prior to the diet, I used black pepper in and on everything I ate.

I gotta say I'm feeling so much better by not eating thes food items. The moment I cheat, I know!!! The scalp goes crazy.

A long time ago I had a acupuncturist who specalized in allergy elimination identified these same foods as being problematic for me.
Again, goes back on o leaky gut.

Permalink Reply by Airam-FFA on May 10, 2017 at 11:47pm

Hi Leni

What you say about the foods is of great interest to me. I bought a couple of AIP books at new year, but still haven't got round to putting the diet into action as it is very restrictive at first. However, my scalp has become much more itchy lately, and wonder, after reading your post, if it might be down to some of the foods that I eat.

I think that I eat very healthily, and didn't think that healthy foods caused itchiness. I am taking turmeric in the form of Golden Paste which makes the turmeric more effective with the addition of black pepper - but maybe like you, I have an intolerance to it. I also eat lots of tomatoes and peppers and many nuts.

I really have to do the AIP Diet and see if any foods increase the itchiness.

Thank you for your post.

xOx

Permalink Reply by Leni on May 15, 2017 at 7:09am

You really might want to consider the diet. Life without black pepper has been difficult, however you get used to it. The most difficult challenge is being in a restaurant or a party. Not a lot of options. I end up eating something I shouldn't. But 1-2 days of an itchy scalp I can tolerate.

Before the diet even became known to me, I was taking Benadryl and that was a help temporarily.

If the diet is too difficult or you want to do something in addition, you should seek out an allergy elimination acupuncturist.

It's expensive , but she can identify all the foods that trigger a response. She can even perform treatments on you to be able to reintroduce these foods.

Let me know if you try it .

I did it years ago when I was still trying to figure out what I was dealing with. Then I went back to my old ways , however the AIP diet was the eye opening moment that it was a correct analysis. I also didn't have the money to keep up with the appointments, but loved the acupuncturist.

Good luck!

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