fed up! long term hair loss

Hi guys!

I apologize in advance for my rambling     I'm so tired of thinking about my hairloss.  I'm a 29 yo single girl and it's been the hardest thing I've ever had to deal with. My hair loss has been going on since 2002.  It was on and off and then started back up in 2005 and hasn't stopped.  In 02, I think it was due to steroids.  I haven't been able to figure out whats going on now.  I've lost about 75% which sucks In 2008, my colonoscopy showed I had no sign of active CD.  I'm still on Remicade though and trying to work my way off of that.  My bowels look like undigested food and fall apart in the water. 

I haven't tried rogaine over all these years.  Perhaps that's a mistake.  I just have felt in my gut that there's a reason for all of this.  And that rogaine wouldn't work or that I would be on it for the rest of my life.  Anyone have true success with this stuff? 

I just think that perhaps I'm lacking something nutritionally.  I'm due for some other blood work today and asked my doctor to check on some other things.  All previous lab work showed normal levels of everything, but perhaps I'm on the low end or there is a deficiency thats not detected by blood tests.  I don't know.  What do you think I should have my doctor look at?  She sent over the lab slip and marked Folate, Vitamin D, and Vitamin B12.  I feel like there is so much else to look at.  Anything else that I should have checked? 

Over the years I've tried steroid foams, sub-ling B12, iron pills, zinc, folic acid, flax seed oil, probiotics, increased protein intake...and probably some other stuff I just can't remember.

I'm thinking about digestive enzymes to maybe help break down my food.  Anyone have any comments about digestive enzymes and crohn's?

I'm overwhelmed by all this.  I want to live my life and just haven't been able to come to terms with this.  

Thanks for letting me vent.  Hopefully you guys have any input.  Thanks *hugs*

I'm new to this and I thought the handfuls of hair falling out in the shower every day were from a combo of steroids and losing 40 lbs in 2 months! My lab tests show my nutrients are still ok too, although low on calcium and potassium. Huh... let me know if you find out anything that helps!

My lab reports have come back "normal" while experiencing hair loss as well. I had it on Remicade, and I had it with Cimzia.

These kinds of issues might be better addressed by a nutritionist, or else by an alternative doctor. My advice would be to ask around and find someone that can recommend an alternative naturopathic doc, or a Kinesiologist or something. Even if you don't follow through with the sometimes strange and annoying remedies they offer, some alternative docs can give you a much better picture of your over-all body health.

I went to an applied kinesiologist (sp?), and he used lab reports from the week or two before, and he painted a wonderful picture for me. Something a regular doc has NEVER done. It took over an hour, but he connected the different readings into their respective groups (ie hormone/adrenal, or Nervous System, or whatever). I found it wonderful.

Something to consider if you hit brick walls with the "regulars"!

Since you can't put your finger on the cause I would talk to your doc. Maybe you can't blame it on Crohn's. Other things can cause it. A friend of mine has another autoimmune disease and was blaming hair loss on that and meds. Turns out she had a hormone problem. I know I'm quick to blame things on this DD and have been wrong a few times and could have had things treated and better much sooner if I hadn't.

Hope you can figure it out.

Hi There,

Do you have any trouble with your monthly cycle like irregularity? PCOS (polycystic ovarian syndrome) can cause hairloss in women at any age. I apparently had this condition for years and did not know it until I started complaining about unexplained weight gain and my docs took a closer look. Even with celiac and crohn's I am still about 20lbs overweight due to the PCOS. PCOS can cause hairloss, acne, hair growth in unexpected places for women (chest, face), weight gain (particularly around the middle, skin tags, high cholesterol. The list is fairly endless. The good news is that it can be treated with birth control or drugs such as metformin. I was on metformin for a while but my gut could not handle it so I am presently taking cinnamon which is a natural alternative. If you do have irregularity or any of the other mentioned issues it may be worth while to reach out to your obgyn.

thanks so much for the responses and the support. perhaps there is something else i need to consider. i have had my thyroid checked, hormones checked, and i'm not experiencing other symptoms of PCOS. i hope to find an answer or just to finally let it go and accept it as is. the worrying can't be helping. i hope to get my blood work done tomorrow and i'll keep you posted.

anyone else reading, please keep any suggestions coming. i'm not calling my doctor back until later this afternoon.

*hugs* sigh, thanks for listening.

I had a friend who lost TONS of hair due to being long on a B vitamin. Took them a while to figure out (she doesn't have Crohn's). Even with supplements I think she still is losing some, but near as badly as before. I believe she is on Folic Acid as well.