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Celiac Disease and Hair Loss
Author: A. MaeGuest
Post Tue Mar 30, 2004 2:49 pm
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Hi, Dolly and others :

Rats. Everything I wrote just got erased for some reason. So here it goes again:

Celiac can certainly have an adult onset. I'm new to the celiac diagnosis and diet, and I don't know how things are going to go yet, but I'll let ya know. At any rate, I was surprised to have it. That I know of, nobody in my family has it. However, I think it might be a little more common than people think, and really, wheat, barley, rye and oats are new introductions into our diets. People ate meat, berries, veggies for a really, really long time before they started eating wheat. Kinda makes ya wonder, huh?

I'm glad that your little girl is doing well. She sounds like a jewel. I understand that when kids have celiac and go undiagnosed, so continue to eat gluten, that it's a really horrible thing for them. I'm glad she's doing better! Is she officially diagnosed? If not, you might want to consider doing that. With me, even though I had the blood tests to show it, they act like it's a really big deal to have an intestinal biopsy to verify it and see how much damage has been done to the intestines. Honestly, sometimes I wonder why we'd go through that when we can just stop eating gluten and see what happens, but I guess it's important for some reason to go all the way with it.

Blessings to all,
A. Mae

Author: A. MaeGuest
Post Tue Mar 30, 2004 2:55 pm
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P.S. I've been trying to find people with celiac disease/gluten intolerance who have had hair loss and have experience with it, or are just going through it. I'd love to keep this thread going! So... if anybody else has experience, I hope you'll post.


Author: Sophia's DadGuest
Post Tue Mar 30, 2004 5:24 pm
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Diagnosis, etc.

Yes, Sophia has been diagnosed with celiac, but based on symptoms and their disappearance after going gluten-free, rather than on a biopsy. Neither we nor our gastroenterologist thought it was necessary or proper to put a four-year-old through the stress and discomfort of a biopsy when all signs clearly pointed to celiac.

We've had something of a setback in the past few months. During the fall and winter, Sophie started losing hair again, and by January of this year, she was almost completely bald again. Based on this and things we've read, we've come to realize that the connection between celiac and alopecia was, for Sophie at least, indirect. We took her to a doctor of herbal and Chinese medicine with whom we were acquainted, and he recommended we add two herbal supplements to her daily regimen (unfortunately, I don't know the names off the top of my head -- I'll try to post them later, in case anyone's interested), and also recommended some foods that would promote healthy hair.

He was particularly interested when we told him that Sophie's hair loss always seemed to get worse in the winter months, because he said that according to Chinese medicine, healthy hair is related to healthy kidneys, and that the kidneys needed special attention when the weather turned cooler. He recommended that we make sure she got lots of "warming" foods such as soups and stews, green tea, and beef, pork, and eggs. We followed his advice, and started noticing new hair growth fairly quickly.

In addition, we took Sophie to see Dr. Whiting in Dallas. He diagnosed her as having Alopecia Areata and recommended that we apply minoxidyl to her scalp twice a day, along with topical cortisone on weekends, the idea being that the cortisone will slow down the immune system's attack on her scalp while the minoxidyl will stimulate new growth.

Well, something is working. Either that, or the alopecia has simply stopped (for now, at least). Sophie now has peach fuzz over most of her head, covering even more than it did last summer before she started losing it again, and it appears to be changing from white to her natural strawberry blond color, which I take to be a good sign. Similar to the regrowth period we saw last year, the areas over and behind the ears are still mostly bare, but the growth appears to be spreading from the top down, and there is significant growth in some areas that haven't had hair in two years or more.

We are, as the saying goes, "cautiously optimistic" that this regrowth will continue, but after the disappointment of last fall, we're not holding our breath. Our friend the Herbal/Chinese Med. practicioner is very pleased with her progress. We haven't talked to Dr. Whiting since our last visit, but are supposed to go back to see him this summer. Hopefully, we'll have good news for him.

BTW, I highly recommend Dr. Whiting, if one can make the trip to Dallas. He's very knowledgeable and personable and was very good with Sophie. He asked lots of pertinent questions and appeared to be open to a wide variety of treatment options.

Just yesterday, my wife went to register Sophie for kindergarten, and when talking to the school nurse about Sophie's AA and dietary issues, she found out that there is another student, one year older than Sophie, in the school who has AA. We were pleased to hear that we won't have to "educate" the entire school, and that Sophie will know that she's not the only one with this problem.

Sophie is definitely a trouper. Although she occasionally voices some frustration with having very little hair and sometimes wishes out loud for long "Rapunzel" hair, she is, in general, a very happy, healthy, outgoing, confident child. We're doing our best to keep it that way.

-Sophia's Dad

Author: A. MaeGuest
Post Tue Mar 30, 2004 5:41 pm
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Wow! She sounds like quite a wonderful little girl! My doctor at the Mayo clinic tells me that those of us with fair skin and red hair are more prone to autoimmune conditions like Sophia has, and like I have. I agree about the biopsy part. It's something that I myself, as an adult, would never wish on anybody. I wonder why everybody has told me that it is so important? Maybe it is because, as an adult, they want to see how long it has been going on or something. I haven't quite come to understand it.

Do you wonder how many of us would have had Sophia's courage and confidence if we had had these things at her age? It sounds to me like you and your wife are just wonderful with her.

Thanks for the reply.

A. Mae

Author: Sophia's DadGuest
Post Tue Mar 30, 2004 8:59 pm
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Why the Biopsy is Considered Important

As I understand it, the biopsy is considered to be important because the clinical definition of celiac disorder specifies that the villi of the intestinal tract are damaged. So, strictly speaking, if your villi aren't damaged, you don't have celiac, and currently the only way to tell if your villi are damaged is to have a biopsy done.

However, there is a school of thought (with which I happen to agree) that says that even if your villi aren't damaged, you can be "gluten-sensitive," "gluten-intolerant," or whatever you want to call it -- sort of "pre-celiac," I suppose.

Neither Sophia, my wife, nor I have had biopsies done, and yet we are all feeling much better after switching to a gluten-free diet. That's evidence enough for me.

From what I've read, it's very common for people with one autoimmune disorder (such as alopecia areata) to also have others (such as celiac). Yes, I've also read that fair-haired, fair-skinned people are statistically more likely to suffer from autoimmune disorders.

In a way, Sophie's hair loss was actually a blessing in disguise. If she hadn't started losing her hair, it probably would have taken us far longer to discover her dairy allergy and celiac disorder, and her health would have suffered far more.

Now, if my little girl could just have her hair back...

Keeping my fingers crossed,

Sophia's Dad

Author: sundaisyGuest
Post Thu Feb 03, 2005 10:11 pm
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testing for celiac sprue

Hi there,

Just wanted to advise that if you are getting tested for celiac sprue, you will not get accurate results if you are on a gluten-free diet.

I've been tested many times for celiac, as well as the biopsy, and they all came back as negative for having celiac. However, my health continued to deteriorate until I started the gluten-free diet and then I realized that during all the times that I had been tested, I had been avoiding gluten.

If your health is improving with the diet, it's a good chance that you have celiac.

One out of 300 folks have celiac sprue. It is a disease more common than what doctors had thought originally....

Author: GigiGuest
Post Mon Oct 10, 2005 12:17 am
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Re: hair loss and celiac

Originally posted by kariI was diagnosed with celiac disease 4 months ago. My hair was always thin, but since going on a gluten-free diet, I've actually started to lose more hair! I've started taking iron supplements (I'm also anemic), but so far I don't see much improvement. Has anyone else had this problem?


Hi Kari, I too suffered for more than 8 years with hair loss and thinning of hair strands that replaced the ones lost.I was amazed at how underdiagnosed this is with the medical proffesion.They just asked if my parents lost their hair and then said it was genetic....It was only with putting all my symptons together,bloating,diarrhea,skin lesions that dont go away and terrible itching without welts, even 2 gastro drs who put me through endoscopies saying I had ulcers with H pylorie i took the medicine they prescribed but nothing helped.I did my own research and stayed away from all gluten products, then had an appt with my internist he suggested blood tests (3 vials) I told him I had abstained from gluten etc. he insisted it was not needed to go back to eating wheat for the test to show the results.I felt he was wrong....I know one thing for sure that the culprits are also in vitamins and OTC drugs as well as fillers in Rx meds . Go to and there is a list of forbidden products and follow it to the letter....if nothing works ask about testing for Whipples disease.....

Author: kater875New Poster
Post Sat Mar 22, 2008 10:02 pm
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Celiacs runs in my family on my father's side. Two of my aunts and an uncle all have the disorder. I'm actually quite positive my father has it himself as he displays many of the systems, but refuses to look into it. About a year ago, I linked my intestinal problems to the possibility of having Celiac's disease. I discontinued all gluten products (with my aunt's guidance) and felt remarkably better. However, around summer time I began to slip a bit and snuck gluten products here and there (which didn't affect my well being all too much). When I went away to college the next fall, I abandoned the gluten free lifestyle all together (living on a college campus I've found it near impossible to eat a well balanced gluten free diet, and to make things more complicated- I don't eat meat). I'm home now- for Spring Break and displaying systems worse than ever. In addition to the intestinal and dermatological problems, my hair is rapidly thinning. About two months ago (over winter break), my physician tested me for hypo thyroid disorder (which my mother has), and is another known cause for alopecia. The tests results were inconclusive, and she ordered me to have follow up blood work in six months time. In the mean time I've found that taking essential oil omega- 3 pills helps, but not nearly enough.

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