Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hair Loss And Misscarraiges/baby Died With Anencephaly


jennifervan

Recommended Posts

jennifervan Apprentice

I was just wondering if anyone has heard of hairloss as a symptom.

I have the mark on my Dna for celiac. I have been gluten free since Dec 26 2005. My hair still falls out once in a while (not as bad as before). How long do you think it will be till I will be better?

In addition I was wondering if anyone has hear of a connection with miscarraiges and or higher levels either spinal bifida or anencephaly with children of Celiacs. I had two healthy pregnancies, then two miscarraiges at 6- 7 weeks pregnant. Finally, we had a son who lived five days and died due to Anencephaly. This was all before I was diagnosed with Celiac . I know that lack of folic acid invitro can cause spinal bifida and anencephaly (which is the opposite of spinal bifida) so I was wondering if there have been any studies that show a connection with Celiac?

Thanks,

Jennifer


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini

sorry for your losses, unfortunately YES, there is a connection between undiagnosed Celiac and miscarriages and birth defects. I had 2 miscarriages prior to my dx.

I also had hair loss... my husband used to freak out about it and thought it was from all the years of coloring my hair, but alas, it was from being undiagnosed. I have been gluten-free for almost 3 years now and my hair is finally starting to stop falling out in clumps. It takes time, but it does get better. I can't remember where I found the studies of the links between celiac and miscarriages and such, but it's out there... google around and I'm sure you will find it.

Carriefaith Enthusiast

I'm sorry :(

Miscarriage and hair loss are connected to celiac disease. I personally had more than normal hair loss when I was really sick.

Guest BERNESES

Jennifer- I'm so sorry about your losses. That must have been very difficult. I asked my doctor about Celiac's and miscarriages and she said that once you go gluten-free you have the same rates as everyone else. If you are undiagnosed, you have a much higher rate of miscarriage. :(

mouse Enthusiast

I was only able to carry one child to term. The two pregancy's after her, resulted in miscarriages. The first at about 7 weeks and the second one at 6 months. The last one was the hardest to bear emotionally. This was almost 40 years ago and I had never even heard of Celiac. And yes there is a big possibility of this being a result of celiac disease. In Italy they test every women for celiac disease, who has one difficult pregancy or miscarriage. I am so sorry about your losses. They are so rough to bear, but things do get better. Just give yourself plenty of time.

Ursa Major Collaborator

As everybody else says, yes to all your questions. I had eight miscarriages before I finally gave up wanting a brother or sister close in age to our youngest, who is six years younger than the rest, due to miscarriages (she should have been a twin, too, and I lost the twin). Nobody could find the cause. Now I know why I had those.

My mother (who undoubtedly had Celiac disease) had five miscarriages before the first live birth, who was early and lived a week, and lost one at six months in between her eight kids. My sister (another undiagnosed Celiac if I ever saw one) had three miscarriages, one at three months, twins at six months, and the last one died inside of her at eight months, after which she got her tubes tied, and later had a hysterectomy.

I am very sorry about all your losses, I know how hard it is, and you never really forget. But maybe, after being gluten free for a couple of years, you will be able to have a normal pregnancy.

maxcarr Newbie

Hi Jennifer, sorry you've had such a tough time with this. I was diagnosed at 40, after having three kids, no miscarriages, thankfully. I did have hair loss, which continued after a year of being gluten-free, then I realized my thyroid levels were changing as my body healed. I have hypothyroidism, and adjusting that level helped my hairloss alot. Good Luck.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GC1 Rookie

What a sobering thread... guess us men don't think about these things like we should. One can only imagine the number of people who have poorer health because a (or both) parent is Celiac...

Sorry to hear of you women having this happen to you... it really is more important to spread the word [about Celiac] than we might sometimes think!

GC

jennifervan Apprentice

Thanks for all of your kind words. We are in the process of adopting a little girl. We did have two sons biologically that were healthy but early. I just wish I would have known about the connection with celiac and miscarraiges and birth defects before. I am blessed to have found out now.

I have never felt better in my life since being gluten free these past 2 months :) .

Thanks for your support,

Jennifer

sspitzer5 Apprentice
I was just wondering if anyone has heard of hairloss as a symptom.

I have the mark on my Dna for celiac. I have been gluten free since Dec 26 2005. My hair still falls out once in a while (not as bad as before). How long do you think it will be till I will be better?

In addition I was wondering if anyone has hear of a connection with miscarraiges and or higher levels either spinal bifida or anencephaly with children of Celiacs. I had two healthy pregnancies, then two miscarraiges at 6- 7 weeks pregnant. Finally, we had a son who lived five days and died due to Anencephaly. This was all before I was diagnosed with Celiac . I know that lack of folic acid invitro can cause spinal bifida and anencephaly (which is the opposite of spinal bifida) so I was wondering if there have been any studies that show a connection with Celiac?

Thanks,

Jennifer

Hi Jennifer,

I'm very sorry to hear about the miscarriages.

Hairloss is also a symptom of low thyroid. I'd check with your primary care physician and have them do a blood workup. Women with thyroid problems also tend to have more miscarriages. And, Celiac and thyroid problems seem to go hand in hand.

S

Guest nini
Hi Jennifer,

I'm very sorry to hear about the miscarriages.

Hairloss is also a symptom of low thyroid. I'd check with your primary care physician and have them do a blood workup. Women with thyroid problems also tend to have more miscarriages. And, Celiac and thyroid problems seem to go hand in hand.

S

I had low thyroid before going gluten-free, but ONLY 6 MONTHS after starting the diet, my thyroid levels were completely normal.

key Contributor

Jennifer,

I am sorry to hear about your losses. I can only imagine how hard it must be.

I had undiagnosed celiac with my 3 kids. My oldest son had a birth defect called "sagittal Craniosynostosis" and required several surgeries on his skull bones to fix his mishapen head. He is fine now and looks beautiful, but the surgeries were depressing and hard to deal with. Then my second child was born without problems and then my third son has something called Neurofibromatosis1, which is a genetic disease and then on top of that he has Celiac and that is how I found out I had it. He too looks normal, other then being very small, but he is smart and doing well so far. It is more of a problem usually once he hits his teen years and it may affect him more, but 60% if cases if NF1 are mild. So we are hoping it only affects him this way. It is a hard disease to explain, but I feel it was caused by my undiagnosed celiac.

Anyway, take care and this site has alot of information.

Monica

Guest BERNESES

Monica- I'm so sorry about the difficulties you've experienced. I hope things get better for you and your family.

Jennifer- that's so great that you are in the process of adopting! I was adopted and it was the best thing that ever happened to me. :)

key Contributor

Jennifer,

Congratulations on adopting. I am considering adopting a little girl someday. I haven't looked into it much, but I have three boys. I would love to have a little girl, but all that we have been through with kids with health issues and then my health not being 100% makes me nervous to be pregnant again. I am waiting to see how I feel in a year.

Good luck and glad you are feeling better.

Monica

bluelotus Contributor

I am so sorry about everyone's loss - those of you that have lost a baby. That must be hard (I haven't tried yet, so I wouldn't know, but can imagine).

About hair loss - yes!! As everyone has said, this is a very common symptom, even young children with celiac disease might have hair loss, not just women. I have been gluten-free for over a year, with plenty of accidental glutenings, so I haven't had much time to heal, but when I have been gluten-free for an extended period, my hair loss gets better. I am also on Target brand rogaine, with the hope that it would help. It doesn't and now I am afraid to stop b/c I don't want my hair to get worse. Grrrrr. Anyone else with this problem? My dermatologist said that I could try stopping it, but said I could go either way.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,802
    • Most Online (within 30 mins)
      7,748

    BoroMike
    Newest Member
    BoroMike
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.