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Permalink Reply by MN on December 13, 2015 at 12:21pm

We live in Canada. My brother who has au jumps between au and aa. Right now he grows patches on his head and his arms, legs, back. He has chest hair and facial hair as well as eyebrows. He went from amount grade 6 to grade 12 with absolutely no hair then it started sporadically growing. However he does have allergies and he's never been tested for sensitivities nor has he ever followed a diet (he eats his allergy foods because they don't cause hives anymore).
The one patch my daughter has on the back left side of her head is quite small (they're all quite small and vary from the size of a Canadian dime to Nickel. The left back one has about 3-4 small hairs growing through. They're quite short so you can't really feel them and the rest of the patches have very small blond hairs that you can only see when the light hits them on a specific angle (I check when she's asleep). They've been that way since the beginning of October. Depending on how her derm appointment goes I'm going to look into a naturopath and I definitely want to get her a food sensitivity test. I'm really hoping she has something going on with her nutrition and her bowels (before aa I wasn't feeding her as I should. I wasn't on her for eating veg or fruit and I think that has something to do with it).

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Permalink Reply by JustAnotherBaldGuy on December 13, 2015 at 10:34am

I did the food sensitivity testing. I have alopecia areata as well as vitiligo and "ibs" (irritable bowel syndrome, pretty much just a global label for stomach problems that aren't well understood or classified).

Did the food sensitivity analysis a few months into AA, and of course cut out pretty much everything on the list. I started following this auto-immune protocol, shortened AIP. Bought a few cookbooks off amazon, took supplements and even made my own kefir. Dropped down from 80kg to 71 quite rapidly, most likely due to sugar, beer and bread being cut out, and my stomach felt better than it had been for a while. As for the alopecia and vitiligo, I remained as bald as I was before the AIP, and the vitiligo remained ~unchanged. Ultimately decided that if I'm going to live with alopecia areata anyway, then life is too short to be skinny (I'm 185cm, or 6'1") and deprived of beer and pizza. Now I just eat whatever I want, but have cut back on eggs in particular (they were my biggest culprit according to the test), and also try to avoid dairy and wheat whenever I can, but I'll still have a pizza and some beers with friends if I feel like it.

All in all I'd say the test was almost worth it (ran me about $350, opted to not have a $150 30-minute chat with their dieticians), if only for the fact that I got a couple of sensitivity-suspicions confirmed. What you need to understand though is that changing your diet from a "SAD" (standard american diet) to AIP is a major lifestyle change, and you're not guaranteed shit. I've read several similar threads on here, and there aren't really many people coming out saying that they grew their hair back or reversed an auto-immune disease. Most advocates of the diet are either selling something or profiting off youtube views, and then there's the guys selling the tests. Another point to consider is that the food will be way more expensive as well, with all the grass-fed beef, gluten-free bread and what not you're supposed to be eating. Basically you could eliminate any and all consumption of yeast, wheat, dairy, eggs, nightshades++++ and I think your most likely result is losing weight and money, without affecting the alopecia in the slightest.

With all the medical breakthroughs being made I'd rather wait for an acceptable medicinal alternative rather than trying to mimic the diet of our ancestors, but that's just me.

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Permalink Reply by MN on December 13, 2015 at 12:15pm

Thank you for your reply.
I am not interested in a diet that will cause weight loss. My daughter is only 3 so she needs to be gaining weight not losing weight. Currently she has 6 meals a day 3 snack meals and 3 main meals. She wasn't a big bread eater anyways other than toast in the morning but she seems fine with the gluten free bread for breakfast or her gluten free cereal and rice milk. I think the most difficult part of this will be the cost and not being able to go out to eat as often.
Basically I just want to leave no stone unturned and I'm trying to be hopeful while being realistic of what might happen. The worst past is not knowing what will happen and my hope is that this will help her. I'm positive her derm will prescribe the steroid cream at her appointment next month and depending on how that goes I'm going to look into a naturopath. My family doctor isn't much help. He's kind of like well whatever you can't do anything so don't do anything which I'm not okay with. I think gluten free and dairy free sounds worse than it is, and if anything it just costs me more money to feed her but she's really eating way better than she was before. As an infant she had an allergy to the protein in cows milk, my theory is maybe she never got over that and the prolonged intake of cows milk is now having an effect on her body. I'm just trying to stay hopeful but in the back of my mind, realistic.

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Permalink Reply by JustAnotherBaldGuy on December 13, 2015 at 1:03pm

The reason the doctor said that is probably because you unfortunately can't do anything. The doctors want to help us, the problem is that they can't really do anything. Otherwise we would have heard of it by now, I don't think I'm the only one having spent upwards of 100hrs searching online for answers. You mentioned that other relatives also have alopecia, meaning hers is probably genetic, and not caused by stress or some other factor. I don't have any children myself, but I can understand your feeling of hopelessness given the situation, and wanting to try anything.

I once even visited a homeopath that gave me some expensive quack "medicine", and I've had accupuncture by two different therapists. I really don't think you should go down that route, as it's costly and filled with false hope, preying on the ones traditional medicine can't help. If she had an allergy to milk as an infant I'd say keep her off milk, but if she isn't celiac and isn't reacting to bread I don't see a reason to go gluten-free, or changing her diet apart from the milk that you've already removed. That being said I'm by no means an expert, just sharing from my own experience.

Best of luck to your daughter and you. By the time she grows up I am certain there will be great treatment alternatives available (there's already been developed a topical form of the JAK-inhibitors, diminishing the risks of side-effects and hopefully yielding the same results as the tablet. Furthermore, I've read that Xeljanz' patent runs out around 2020, meaning we'll get cheap generic alternatives that can be compounded into cream form).  

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Permalink Reply by MN on December 13, 2015 at 1:28pm

Thank you for your reply.
Any advice is good advice.
I'd go a naturopathic rout for more insight on sensitivities, I wouldn't try acupuncture on her. I don't want her to feel like a patient in a sense that I'm pushing all sorts of medicine on her.
I removed gluten after doing a lot of research that made some sense with how she was feeling. Often after eating pasta or bread etc, she would complain about a tummy ache. Lately she had really bad gas (cut gluten out completely last Monday). Since fully revamping her diet she hasn't complained about tummy problems. I had a laps with her on Tuesday where she had crackers and a rice crispy square (one had gluten the other had dairy) and not 10 minutes later she started complaining that her tummy was hurting.
I really believe there may be a connection, if there is and this corrects itself then that's great. If there isn't then there's no harm in her eating it later on.

Another point about my family, my relatives never searched for other answers. My brother never did injections (petrified of needles). They never looked for alternative medicine, never altered diets; never supplemented vitamins. My mom was never hard on my brother for eating, he just ate whatever he wanted whenever he wanted. So although I understand my daughters chance of having alopecia is greater, I remain hopeful that the heriditary cause has never been investigated by anyone in my family. I'm hoping that perhaps I can find an underlying cause for my daughter and that these methods work.

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