Celiac And Alopecia?

[confused mom]

My daughter tested positive for Celiac antibodies last Dec. She had a biopsy of her small intestine which came back inconclusive, as there was no damage to her villi. Her doctor took her off gluten, but her stomach aches didn't really improve much. He then diagnosed her with "latent Celiac" since she had no intestinal damage and also diagnosed her with irritable bowel syndrome because she was still having stomach aches & constipation. We took her to another doctor for a second opinion and this doctor put her back on gluten for one month and then will test her blood again. If her levels are elevated, then we will for sure know she has Celiac. I noticed today that the top row of each of my daugter's eyelids are missing clumps of eyelashes! She swears she didn't pull them out or do anything to make her eyelashes fall out. Is it possible that, after being back on gluten for two weeks, that she has developed the auto-immune disease called Alopecia, where the body attacks hair follicles and patients lose their hair? I'm really worried that this is what she has. I haven't called the doctor yet. Has anyone else with Celiac experienced hair loss???

[Diane-in-FL]

My daughter tested positive for Celiac antibodies last Dec. She had a biopsy of her small intestine which came back inconclusive, as there was no damage to her villi. Her doctor took her off gluten, but her stomach aches didn't really improve much. He then diagnosed her with "latent Celiac" since she had no intestinal damage and also diagnosed her with irritable bowel syndrome because she was still having stomach aches & constipation. We took her to another doctor for a second opinion and this doctor put her back on gluten for one month and then will test her blood again. If her levels are elevated, then we will for sure know she has Celiac. I noticed today that the top row of each of my daugter's eyelids are missing clumps of eyelashes! She swears she didn't pull them out or do anything to make her eyelashes fall out. Is it possible that, after being back on gluten for two weeks, that she has developed the auto-immune disease called Alopecia, where the body attacks hair follicles and patients lose their hair? I'm really worried that this is what she has. I haven't called the doctor yet. Has anyone else with Celiac experienced hair loss???

Yes, I've seen several posts on here mentioning hair loss and thinning hair. I don't remember seeing anything about the eyelashes specifically, but there's probably something on here about that as well. My own hair became thin and brittle. After 9 months on the diet, it's starting to look healthier. My doctor said that it might take a year. It's due to all the vitamin and nutrition deficiencies caused by celiac, I guess. Hopefully, your daughter's eye lashes will grow back after she goes back to being gluten free. Good luck!

[ravenwoodglass]

I also have hair loss when glutened and had lost a lot before I was diagnosed. I also lose hair if I injest soy.

Sometimes hair loss will occur when the body is severely stressed, that is not uncommon. I would talk to her doctor about it and about any other issues that have worsened since she has gone back on gluten.

False negatives in both blood and biopsy are really all too common. If she had positive results on either she need to be on the diet. If she has been on the diet for a while she might need more than a month back on gluten for positive blood test results so be prepared for those to come back negative.

IMHO the doctor should have rerun her blood work to see if the antibodies had gone down rather than doing a gluten challenge.

Gluten is tricky and can sneak in. It isn't uncommon to have it take a few months before we get the lifestyle down as it involves much more than just food.

Do other family members eat gluten? If they do she needs seperate nut butters, butter, condiments etc. If you bake with gluten flours the flour becomes airborn and can keep her ill. She needs her own toaster and if nonstick pans are scratched she needs a new one for her use. She also should not use wooden utensils or cutting boards that are also used for gluten.

I don't know her age but if she is old enough to wear makeup have her make sure that is gluten free also.

She may need to cut out dairy for a while if she hasn't already as other intolerances are not uncommon. Dairy and soy being, I think, seen the most often. Many of us are able to add dairy back in after we have healed.

I hope she is feeling better soon.

[Mari]

When I was an undiagnosed celiac most of my eyelashes fell out, really upsetting - I was quite proud of my long dark lashes. Over time most of my body hair fell out too tho the hair on my head only thinned a little. I have grown back some of my body hair. I read about a 12 year old boy who was completely bald who's hair all came back on a gluten-free diet.

[Jungle]

Too bad we can't selectively choose where to lose the hair.

[djk40]

Yes, I've seen several posts on here mentioning hair loss and thinning hair. I don't remember seeing anything about the eyelashes specifically, but there's probably something on here about that as well. My own hair became thin and brittle. After 9 months on the diet, it's starting to look healthier. My doctor said that it might take a year. It's due to all the vitamin and nutrition deficiencies caused by celiac, I guess. Hopefully, your daughter's eye lashes will grow back after she goes back to being gluten free. Good luck!

I have been losing hair for years and have been wondering if celiac is the culprit. I have been on a gluten free diet for a year and a half now and don't feel 100% yet and my hair is still falling out. However I don't have a dishwasher AND I don't have a gluten free kitchen as my family is not gluten free, so maybe that's why I can't seem to get to a point that I feel good all the time.