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Alopecia and intestinal factors?
Hi there - I am new to this site but sure wish I had found it sooner. My daughter who is 3 and 1/2, was diagnosed with Alopecia when she was just under 2.
Like everyone else, I've logged more hours than I could count trying to research this condition and more than anything, trying to figure out the "triggers" that cause the flare-ups.
My husband and I were reading through the news about the recent research that came out of Columbia University. If I understand it correctly (a big IF!), it suggests that the genes indicate that Alopecia is more like Celiac and Rheumatoid Arthritis than psoriasis.
I wonder what this might mean for treatment options. My daughter is being treated with meds that were developed for psoriasis.
Does anyone make the connection with the Celiac - otherwise, people talk a lot about diet with this condition - gluten-free, leaky gut, etc. Does this new research sort of support that idea, in a way?
Maybe healing the intestines/stomach will help calm the immune system which would lead to fewer flare-ups?
The thing I don't understand about my daughter - she has had almost complete regrowth but at the very same time - it falls out in other spots. It's not just a few spots and then months later, a few more. It's constant with some growing in while other new spots are showing up - which makes me feel like her immune system is never calm - so something is always irritating it??
I don't know - does anyone have any thoughts on this? Does anyone think this research is pointing in that direction or am I making too much of it?
Much thanks!
Cari
Like everyone else, I've logged more hours than I could count trying to research this condition and more than anything, trying to figure out the "triggers" that cause the flare-ups.
My husband and I were reading through the news about the recent research that came out of Columbia University. If I understand it correctly (a big IF!), it suggests that the genes indicate that Alopecia is more like Celiac and Rheumatoid Arthritis than psoriasis.
I wonder what this might mean for treatment options. My daughter is being treated with meds that were developed for psoriasis.
Does anyone make the connection with the Celiac - otherwise, people talk a lot about diet with this condition - gluten-free, leaky gut, etc. Does this new research sort of support that idea, in a way?
Maybe healing the intestines/stomach will help calm the immune system which would lead to fewer flare-ups?
The thing I don't understand about my daughter - she has had almost complete regrowth but at the very same time - it falls out in other spots. It's not just a few spots and then months later, a few more. It's constant with some growing in while other new spots are showing up - which makes me feel like her immune system is never calm - so something is always irritating it??
I don't know - does anyone have any thoughts on this? Does anyone think this research is pointing in that direction or am I making too much of it?
Much thanks!
Cari
Replies to This Discussion
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Permalink Reply by Ann G. Mack on
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Dear Caring Mom,
I was diagnosed with Alopecia Areata that later progressed to Universalis in a matter of days approximately in 1973; I was between the age of 13 or 14 years old. My out break was first noticed by the beautician my mother scheduled on a biweekly basis to dress my hair as well as my sisters. During this time, unfortunately, there was very little to no information or reseach on the subject of hair loss. Living in the Washington Metropolitan area, my mother opted to take me to every medical facility in the area with no success. After seeking medical attention for this disorder for the very last time in search of answers and hope, my mother became very distraught not knowing how to help me or ease my pain. When she decided to seek the assistance of Johns Hopskins, I had enough of going from one doctor to the other in search of hope with no answers only to be disappointed about the outcome. Attempting to conduct research on my own to get a better understanding for the condition for my mental sanity, I thought being a vegetarian with no consumption of dairy products would reverse the condition. After a year of changing my diet and seeing no change or regrowth, I opted to go back to eating what I wanted.
I, unfortunately, have no real solution for you; however, I wish to impress upon you not to give up hope too soon. Nonetheless, also prepare yourself should there be no simple solution other than you being strong for your daughter in teaching her what it is to accept who she is with or without hair. The love you and your husband bestow upon her duirng this ordeal in how you approach it will make a world of difference.
On another note: I have tried just about everything, but possibly not soon enough to make a difference to include cortisone injections to my head. Please consider "Acidophilus;" a probiotic to start. This could help restore the (good) bacteria in the intestines to help improve or strenghten your daughter's immune system. Also have your daughter checked for the possibility of having a vitamin D deficiency as well. These are issues I learned much later have had a impact for me. [Other herbal products; such as, Tea Tree Oil for the scalp [and all skin ailments] should be researched too.]
At 49 years, I am completely bald - Alopecia Universalis. Today, I am handling my lost much better than I did many years ago. I decided to no longer wear a wig since 1988.
Many blessings!
Ann
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Permalink Reply by Cari on
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Hi Ann - thank you for sharing your story and for your insight - I really appreciate both. It sounds like you have been through so much.
I learned rather young that the medical community often does not have the answers - after a very frustrating 3 years, my Mom was finally diagnosed with fronto-temporal dementia at age 53. No one could tell us why or how - only that there was nothing that could be done.
Even with that experience under my belt, I am still having a hard time accepting that I might not be able to "figure it out." I guess the Mom in me feels like I have to keep trying. On one hand, I tell myself not to give up but on the other hand, I question using the medications on her and don't want to end up dragging her all over town to dermatologists, allergist, etc. What do you mean in regards to researching skin ailments?
Above all else, I remind myself every day of the most important thing - what you stated - the best thing we can do for our daughter is to teach her to love herself regardless and to show her that we, in fact, absolutely do!
Thank you again for responding & many blessings to you as well!
Cari
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Permalink Reply by Patrick Moore on
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Alopecia is a mystery and there's no real answers to why it acts the way it does. I've been dealing with it for the last 10 years and the severity of the hair loss was always different depending on my stress level. Sometimes the hair would just thin, sometimes it would fall out in spots, about a week after I got married I lost almost all the hair on my head but it always grew back thick and dark after cortizone injections and use of cortizone scalp solution. One time I wanted to see if it would grow back on it's own without the injections and it didn't. I regret waiting too long because my hair never grew back normal again.
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