fed up! long term hair loss

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New Member

Date Joined Jul 2009
Total Posts : 9
   Posted 7/8/2009 12:14 PM (GMT -7)   
Hi guys!
I apologize in advance for my rambling  rolleyes    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 confused 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*

New Member

Date Joined Jul 2009
Total Posts : 9
   Posted 7/8/2009 12:17 PM (GMT -7)   
can i just add that is hairloss on my scalp.  and also patchy hairloss and thinning everywhere else.  the patchiness especially evident on my legs.  thanks!

Regular Member

Date Joined Jul 2009
Total Posts : 24
   Posted 7/8/2009 12:24 PM (GMT -7)   
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!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 7/8/2009 12:29 PM (GMT -7)   
Many have found some relief to the hairloss caused by our meds by adding Folic Acid and/or Biotin to help stop it. Maybe try adding those.

Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 7/8/2009 12:38 PM (GMT -7)   
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"!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.

New Member

Date Joined Jul 2009
Total Posts : 9
   Posted 7/8/2009 12:44 PM (GMT -7)   
thanks for all the replies so far.

@patientspiders...its funny you mentioned this. Perhaps I should have mentioned this as well. I've been seeing a naturopath since January for random hives and hairloss. I've been on a candida diet since then. Which has actually helped with the skin issues. I slipped up last week and ate something too high and sugar and since then I've been itching like crazy. So far, it hasn't been very helpful with the hair. I've been a really good patient and very compliant, even though some of it feels like hoopla. I'm doing allergy clearings and she's going to check me out tomorrow to see if I tolerate B12 supplements. Are you still experiencing hair loss?

How do you all deal with it emotionally? Having a fear of rejection in relationships is my biggest issue.

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 7/8/2009 1:08 PM (GMT -7)   
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.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

Regular Member

Date Joined Jul 2009
Total Posts : 24
   Posted 7/8/2009 2:16 PM (GMT -7)   
That's actually not the first time I've had folic acid mentioned to me.... I'm somewhat underweight, having lost 40 lbs, and my BMI is around 17. I think I will try that and the Biotin... THANKS! I really appreciate the quick repsonse!

Regular Member

Date Joined Nov 2007
Total Posts : 147
   Posted 7/8/2009 2:24 PM (GMT -7)   
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.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 7/8/2009 3:42 PM (GMT -7)   
Just wanted to say the I'm sorry to hear that your suffering. I hope all goes well for you.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

New Member

Date Joined Jul 2009
Total Posts : 9
   Posted 7/9/2009 6:05 AM (GMT -7)   
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.

Regular Member

Date Joined Jun 2009
Total Posts : 86
   Posted 7/9/2009 2:19 PM (GMT -7)   
look into biotin, horse tail also known as shave grass it has high levels of silica and Methylsulfonylmethane (msm). there has been a few study's on saw palmetto that look good too. protein is also important. if you are a vegatrian make sure to supplement with a protein drink of some kind.

diagnosed with crohn's 6-15-09 at age 23.

asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

multivitamin, cal/mag, probiotic, fish oil, vitamin C, digestive enzymes, rice protein. looking into l-glutamine next

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 7/9/2009 4:09 PM (GMT -7)   
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.

Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.

Post Edited (Jen77) : 7/9/2009 5:19:19 PM (GMT-6)

Regular Member

Date Joined Aug 2007
Total Posts : 44
   Posted 7/9/2009 4:56 PM (GMT -7)   
I'd definitely give biotin a try. Since starting Imuran and tapering pred, i've been losing hair but I think the biotin supplement is definitely helping. I've got all these short "baby" hairs coming in since starting it about 2 months ago, which hopefully will soon get long enough to balance out the hair that's been falling out.
21 years old, diagnosed with CD at age 18,
First major flare since diagnosis started in Nov. 08. Still recovering and mostly stable, but having trouble tapering Pred.

Current Meds:
Prednisone 12.5 mg, Azathioprine 75 mg (just started 5/03, but think it may be starting to kick in), Asacol, and Rowasa
Plus Vancomycin and Florastor for a recurring case of c diff.

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