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My Story Of Hairloss....need Advice

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Guest zk75

Hi everyone,

 

I've been a lurker here for a while and now posting for the first time.

 

First, a little background…I'm 37, female, originally from India and live in Riyadh KSA. Back in 2001, I was a regular 20 something young woman with no significant health issues. Then, after a round of hepatitis B immunizations, I developed excessive hair loss. A couple of doctors I went to dismissed it as dandruff or temporary shedding. Thyroid function was checked and was ok.

Upon researching the situation my self, I found a published paper showing hepatitis b vaccine to be linked with hairloss as a side effect and began to believe that that was what had happened to me.

The shedding went on over the years and in 2003 I started losing eyebrow and eyelashes as well. In Dec 2004 I had my first child and during the pregnancy realized that I'd lost a lot of body hair as well and my nails had become pitted. A doctor diagnosed me as having diffuse alopecia universalis. She suggested steroids and minoxidil as treatments but I declined to go that course.

All of this has continued to this day and I've lost about 50-60 percent of hair all over my body with little to no regrowth.

 

About four months ago I found out that alopecia and celiac might be connected. Actually, I'd known of the association previously but didn’t think that it applied to me since I'd eaten wheat all my life and never had problems. But then I read a few positive stories on another message forum and decided to go gluten free for 6 weeks at least and see if anything happened. The results really surprised me.

 

First, I should say that I didn’t really go as strictly gluten free as a true celiac would, I didn’t knowingly eat anything with wheat, but I cook with regular flour for my family all the time in a common area so some of it would most definitely have ended up in my food. Never the less I did see some effects that I think are significant.

 

One month into the diet, I saw that the pitting on the nails of my right hand was lesser and the middle finger  nail actually had a patch that was clear! This was the first time in 8 yrs that it was like that. Also when I looked really close in the mirror I saw a few baby eyelash hairs on the lower lids. A couple of weeks later I could see a few tiny new hairs on my head!  This really excited me and I decided to continue with the diet.

 

It's been three months now, and I don’t know where to go from here. Unfortunately the clearing I'd seen in the nails has not progressed any further, I thought that with time the pits would disappear completely. And the funny thing is that the effect is only on the right hand and not on the left. Also, I don’t think there's any difference in the rate of shedding, I'm still losing hair but now there is some regrowth.

 

So given my results, could I have celiac? I have absolutely no GI issues and no other health complaint. Sometimes I think that my energy level is lower than that of other ppl and I tire easily but then I do have three young children. Also, if its of any significance, ive been thin all my life. Some people consider me underweight….at 5'3" I'm 45 kg. I eat ok i think and cook most of my meals in butter or ghee ..recently had vitamin d checked that came out really low (10ng), hemoglobin was fine though (about 13)

 

I know that for the blood tests I'd have to be eating wheat again. How long does it take for antibodies to develop?

Oh I forgot to say, for the past 4 years I'd  been having migraines, one every 3-5 weeks, sometimes more and they'd be so severe, the only thing I could do was lie in bed in a completely dark room. in the last three months, however I've had only one and that too only about 10% of the usual intensity.

 

Thanks for reading and for any input anyone can provide. I've learnt a lot from the community here.

 

 

 

 

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Welcome to to boards.  :)

 

As you correctly said, celiac disease can cause hair loss, but so can many other (autoimmune) issues - hypothyroidism  (Hashimoto's is one of the worst for that). Low nutrients and migraines are also linked to gluten intolerance and celiac disease. It is definitely something to consider.

 

You are correct that in order to have the most accurate blood tests, you would need to be eating gluten. The ranges I've heard are 1-4 servings of gluten (ie. bread slices) per day for 4-12 weeks - closer to 12 weeks is generally accepted to be better. If you have the endoscopic biopsy done, the time required to be on a gluten challenge is shorter because you don't have to worry about auto-antibodies building up to a noticeable level.

 

If you decide to skip testing and commit to a 100% gluten-free diet with the assumption that you are a celiac or have Non-Celiac Gluten Intolerance/sensitivity (NCGI), I think that you will have to reduce your risk of cross contamination - I do not beiliev handling flour is safe. Small amounts (like a very fine dusting of wheat flour) can set someone with gluten intolerances back a couple of weeks, so if you contaminate your food every two weeks, that is an entire month of zero health gains. It's probably safer to purchase wheat based baking for your family or cook and bake gluten-free - in which case you can enjoy it too!  :)

 

You'll need to give the diet time too. It took 2 months of 100% gluten-free diet before my hair started growing back in... little tufts of hair sticking up on the top of my head - not attractive but I was happy.  ;) LOL  BUT, 4 months into the diet I had some sort of autoimmune flare-up where my non-gastro symptoms went a bit hay wire and my hair loss increased alarmingly for a couple months. It ended 6 months into the gluten-free diet. I'm getting a lot of regrowth now.... Anyway, my point is that it can sometimes take months (or even years) for your system to settle down so don't abandon the gluten-free diet if you aren't seeing more results once you go 100% gluten-free. I would give it until at least Halloween.

 

It's helpful to record your symptoms and foods too. Sometimes problems improve so slowly (like hair growth) that we don't notice it until we look back over notes, unlike reduced migraines which are hard to miss.

 

This report has helpful info and lists the tests you'll want to request (page 10-12) if you decide to get tested.

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

I recommend getting your thyroid checked if you haven't already. Check your TSH (should be near a 1), free T4 and Free T3 (should be in the 50-75% range of your lab's reference range, and TPO Ab (should be very low).

 

Best wishes!

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Hi - I'm new here to the forum but have been lurking and reading for about a week. I know this is an old thread, but I'm replying in case someone else comes along and reads it like I did.

I have a couple more suggestions regarding hair loss.

For me, the main issue was that my thyroid tested 25% lower than usual after doing Atkins induction. Since I already have low thyroid, 18 carbs/dat was too low. I had good success at 45 carbs. Per my endocrinologist 50 carbs is the lowest he recommends. Adding back a little potato & rice helped.

Also I used a Biotin supplement and many others I've talked say that helps with hair loss. I take 7,500 mcu/day.

Celiacs often do not absorb nutrients well. Try a liquid multivitamin. I just started taking one along with fish oil and K2 in liquid form also. I've heard powder can work also.

Last idea - I was using a shampoo that had hydrolized wheat protein in it. When I stopped using it my hair loss decreased significantly. Maybe check for hidden sources of gluten in your shampoo, although this is not an issue for many celiacs, some of us are sensitive.

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I lost body hair which is now starting to grow at a rapid rate.  I finally pointed out the advantages as I didn't have to shave.  Now, I guess I feel glad to buy a shaver for the first time in years!  My problem almost certainly had to do with other allergies as when I began treatment for those the hair started back in earnest.

 

Dee

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