celiac and pregnant?

[ljgs]

Hi, all. I'm a professional writer (and mother of a young adult with celiac) who is working on a magazine story about the special considerations of celiac disease in pregnancy. Would anyone on this board be willing to be interviewed about their experience? I'd love to know what advice your doctor and/or nutritionist gave you, what you ate, if you supplemented your diet, and anything else you'd like to share. Feel free to private message me. And I do have permission from the admin to post this here. Thanks!

[kareng]

Admin has approved this request.   She is legit.  so help her out if you can.

[Posterboy]

  On 11/10/2017 at 7:45 PM, ljgs said:

Hi, all. I'm a professional writer (and mother of a young adult with celiac) who is working on a magazine story about the special considerations of celiac disease in pregnancy. Would anyone on this board be willing to be interviewed about their experience? I'd love to know what advice your doctor and/or nutritionist gave you, what you ate, if you supplemented your diet, and anything else you'd like to share. Feel free to private message me. And I do have permission from the admin to post this here. Thanks!

Expand Quote  

ljgs,

This is an interesting topic you have chosen to write about I hope you are able add to our understanding of this important topic.

Stress has been shown to contribute/occur before a celaic diagnosis.

here is the celiac.com article about this issue.

https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html

Pregnancy was considered a "negative event" in about 1 in 5 of those with pregnancies.

Jane Anderson on the verywell site has a very good researched article about this summarizing the best study I have seen on this topic about "reproductive life disorders in italian celiac women"

here is the link

Open Original Shared Link

I will quote from a notable section of the article. 

"First Comes Baby, Then Comes Symptoms

Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy.

But that statistic doesn't necessarily mean anything. Many women have their first baby in their 20s or early 30s, and celiac disease diagnosis tends to occur a little later in life — in your late 30s, 40s or even 50s and beyond. Delays in diagnosis (even in Italy, which tends to be more celiac-aware than some other countries) could mean the women in the study actually had celiac long before they learned they did.

There's some evidence for this. Half of the celiac women in the study said they had experienced menstrual cycle disorders potentially linked to celiac disease before they experienced any other symptoms. And, women who eventually were diagnosed with celiac disease were twice as likely as other women to experience pregnancy complications, which also have been linked to celiac disease.

Both of these issues could indicate the women potentially were suffering from early, undiagnosed celiac disease at the time of their first pregnancies, but they and their doctors didn't recognize the symptoms."

Your writing instincts might be on to something.

This research seems  to indicate that indeed pregnancy could trigger a subsequent celiac diagnosis.

quoting again for emphasis.

"Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy."

They (the researchers) think this could mean "could indicate the women potentially were suffering from early, undiagnosed celiac disease at the time of their first pregnancies, but they and their doctors didn't recognize the symptoms" which is pretty par for the course when diagnosing celiac disease.

Even with the many advances in diagnosing celiac today it regualarly missed for IBS or NCGS instead.

https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html

It seems in most cases the IBS previously diagnosed or NCGS instead progresses to a full blown Celiac diagnosis after the pregnancy.

If only doctor's knew of this association between pregnancy and subsequent celiac disease then maybe improved celiac diagnosis would result in better care for the mother.

Much like people who have gestational diabetes are more prone to develop diabetes themselves.  If pregnancy is considered a risk factor for celiac's then the doctor's could be on the look out for it and catch it sooner.

Instead of the customary 8 to 10 years it often take to diagnosis many patients still today.

I hope your magazine article end's up educating people of this new developing connection between a future celiac diagnosis and pregnancy as "a negative event" that can lead to a celiac diagnosis.

Also you said you were a mother of a "young adult with celiac's" don't forget to have yourself checked for Celiac disease yourself.  It does run in families.

I hope this is helpful as always.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

[kareng]

  On 11/25/2017 at 5:06 PM, Posterboy said:

ljgs,

This is an interesting topic you have chosen to write about I hope you are able add to our understanding of this important topic.

Stress has been shown to contribute/occur before a celaic diagnosis.

here is the celiac.com article about this issue.

https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html

Pregnancy was considered a "negative event" in about 1 in 5 of those with pregnancies.

Jane Anderson on the verywell site has a very good researched article about this summarizing the best study I have seen on this topic about "reproductive life disorders in italian celiac women"

here is the link

Open Original Shared Link

I will quote from a notable section of the article. 

"First Comes Baby, Then Comes Symptoms

Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy.

But that statistic doesn't necessarily mean anything. Many women have their first baby in their 20s or early 30s, and celiac disease diagnosis tends to occur a little later in life — in your late 30s, 40s or even 50s and beyond. Delays in diagnosis (even in Italy, which tends to be more celiac-aware than some other countries) could mean the women in the study actually had celiac long before they learned they did.

There's some evidence for this. Half of the celiac women in the study said they had experienced menstrual cycle disorders potentially linked to celiac disease before they experienced any other symptoms. And, women who eventually were diagnosed with celiac disease were twice as likely as other women to experience pregnancy complications, which also have been linked to celiac disease.

Both of these issues could indicate the women potentially were suffering from early, undiagnosed celiac disease at the time of their first pregnancies, but they and their doctors didn't recognize the symptoms."

Your writing instincts might be on to something.

This research seems  to indicate that indeed pregnancy could trigger a subsequent celiac diagnosis.

quoting again for emphasis.

"Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy."

They (the researchers) think this could mean "could indicate the women potentially were suffering from early, undiagnosed celiac disease at the time of their first pregnancies, but they and their doctors didn't recognize the symptoms" which is pretty par for the course when diagnosing celiac disease.

Even with the many advances in diagnosing celiac today it regualarly missed for IBS or NCGS instead.

https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html

It seems in most cases the IBS previously diagnosed or NCGS instead progresses to a full blown Celiac diagnosis after the pregnancy.

If only doctor's knew of this association between pregnancy and subsequent celiac disease then maybe improved celiac diagnosis would result in better care for the mother.

Much like people who have gestational diabetes are more prone to develop diabetes themselves.  If pregnancy is considered a risk factor for celiac's then the doctor's could be on the look out for it and catch it sooner.

Instead of the customary 8 to 10 years it often take to diagnosis many patients still today.

I hope your magazine article end's up educating people of this new developing connection between a future celiac diagnosis and pregnancy as "a negative event" that can lead to a celiac diagnosis.

Also you said you were a mother of a "young adult with celiac's" don't forget to have yourself checked for Celiac disease yourself.  It does run in families.

I hope this is helpful as always.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

Expand Quote  

I am sure she has done lots of research.  Now she wants actual experience from women.  

I don't think you have been pregnant?  ?

[Posterboy]

  On 11/25/2017 at 7:33 PM, kareng said:

I am sure she has done lots of research.  Now she wants actual experience from women.  

I don't think you have been pregnant?  ?

Expand Quote  

kareng,

You are right.  I haven't been pregnant but i thought the research might be beneficial to a professional researcher (if she didn't know it already) that there was specific research about this very topic.

often I have wished I knew about things sooner than I found out about it from my doctor.

and the research indicated the doctor's (often)  were not aware of this possible connection/risk factor.

And if the doctor's are not aware of it probably most patient's aren't either.  And might explain the silence on the "advice received" from this thread because most haven't been informed of this possible connection especially by/in a 2nd pregnancy.

I know I wasn't.

I was just trying to be helpful.  I do know heartburn is common in a pregnancy because three of my friends wife's are pregnant right now and their heartburn is rampant.

I wouldn't want them to not be aware of this possible connection though I don't think they would listen unless it came from a doctor.

posterboy,

 

 

 

[kareng]

  On 11/26/2017 at 1:04 AM, Posterboy said:

kareng,

You are right.  I haven't been pregnant but i thought the research might be beneficial to a professional researcher (if she didn't know it already) that there was specific research about this very topic.

often I have wished I knew about things sooner than I found out about it from my doctor.

and the research indicated the doctor's (often)  were not aware of this possible connection/risk factor.

And if the doctor's are not aware of it probably most patient's aren't either.  And might explain the silence on the "advice received" from this thread because most haven't been informed of this possible connection especially by/in a 2nd pregnancy.

I know I wasn't.

I was just trying to be helpful.  I do know heartburn is common in a pregnancy because three of my friends wife's are pregnant right now and their heartburn is rampant.

I wouldn't want them to not be aware of this possible connection though I don't think they would listen unless it came from a doctor.

posterboy,

 

 

 

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I am going to be blunt - when guys comment on these topics that ask about pregnancy experiences or menstrual periods or menopause - ii find it pretty creepy and insulting. Unless you are an OB/ GYN.... but even then,we are talking about experiences....

[kareng]

And heartburn in pregnancy  is no secret.  It's a well know problem that happens to most pregnant women at some point.   Your friends' wives know why they have heartburn and some random guy explaining it to them is not going to be well received.

[Cara in Boston]

I was not diagnosed (nor did I have any symptoms) until my second pregnancy.  At about 4 months, I developed GI symptoms, insomnia, etc.  I just attributed it to being pregnant.  The symptoms continued and new ones developed.  Over 5 years, I saw doctors for various problems (neurologist for dizzy spells and numbness; cardiologist for heart palpitations, etc.). I developed anxiety, but I thought it was because I felt very ill and the doctors couldn't find anything wrong. I was on medication 2x a day for acid reflux. My hair was falling out.   It wasn't until my son was diagnosed that I was even tested .  Once I went gluten free, all my symptoms faded away and I returned to normal.  I have two boys.  The older one is fine.  Younger one has Celiac. I often wonder if my pregnancy with him triggered it for me.  Since he was diagnosed much younger (age 5) I often wonder if somehow me developing it while carrying him is what triggered it for him.  This doesn't answer your question, but I thought it was interesting in light of the research that was shared.

I appreciated reading the article.

cara

[ravenwoodglass]

  On 11/10/2017 at 7:45 PM, ljgs said:

Would anyone on this board be willing to be interviewed about their experience? I'd love to know what advice your doctor and/or nutritionist gave you, what you ate, if you supplemented your diet, and anything else you'd like to share. Feel free to private message me.

Expand Quote  

Posterboy, The OP was not asking for anyone to give her advice because of issues she was having. She is wanting to interview women celiacs about their experiences. Did you read her post?

[ljgs]

Thank you all for replying. Yes, posterboy, I got tested as soon as my daughter was diagnosed, and have been tested occasionally since. 

[Posterboy]

  On 11/26/2017 at 10:16 PM, ravenwoodglass said:

Posterboy, The OP was not asking for anyone to give her advice because of issues she was having. She is wanting to interview women celiacs about their experiences. Did you read her post?

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Ravenwood, KarenG, Cara in Boston,

I was wrong to comment.  I am sorry.

I just identified with the italian research that seemed to explain my own experience as/of someone who had celiac disease (I believe undiagnosed) --  My mother.

Unfortunately it (my diagnosis) came too late for my mother to do anything about it in her life.

She was in her late 70's when I was first diagnosed and only lived about 5 years after receiving an early onset dementia diagnoses among other health problems. . .  probably alzheimer's though it was never confirmed.

My mom had many children before I came along God rest her soul and was the best woman I ever knew .  . . I had no idea my birth was such a strain on her.

Cara in Boston I do believe I inherited Celiac disease from my mom and that subsequent brothers and sisters before me triggered NCGS and/or Celiac undiagnosed for/in her.  . . for she had constant GI problems.

  On 11/26/2017 at 2:02 AM, Cara in Boston said:

I was not diagnosed (nor did I have any symptoms) until my second pregnancy.  At about 4 months, I developed GI symptoms, insomnia, etc.  I just attributed it to being pregnant.  The symptoms continued and new ones developed.  Over 5 years, I saw doctors for various problems (neurologist for dizzy spells and numbness; cardiologist for heart palpitations, etc.). I developed anxiety, but I thought it was because I felt very ill and the doctors couldn't find anything wrong. I was on medication 2x a day for acid reflux. My hair was falling out.   It wasn't until my son was diagnosed that I was even tested .  Once I went gluten free, all my symptoms faded away and I returned to normal.  I have two boys.  The older one is fine.  Younger one has Celiac. I often wonder if my pregnancy with him triggered it for me.  Since he was diagnosed much younger (age 5) I often wonder if somehow me developing it while carrying him is what triggered it for him.  This doesn't answer your question, but I thought it was interesting in light of the research that was shared.

I appreciated reading the article.

cara

Expand Quote  

I do know both me and my brother (we were late children) have had GI problems all our lives.

I shudder to think if I was born later if I wouldn't have been a "choice" and a not a life or possibly others would of counseled my mom to end her geriatric pregnancy.

I am forever grateful she choose to have me.

Jeremiah 1:5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee . ..

Again I am sorry.

truly the posterboy by the grace of God,