Re: Should I eat GF while nursing??

[Guest guest]

Phoebe, I read a handful of research on preventing or delaying celiac disease in a newborn. They do not seem to be sure of anything in this area, but they do not think that the mother's milk would bother the baby. If that is so, going gluten-free probably wouldn't make a difference (but maybe it would).

They think that nursing the child up to 2 would make a difference in delaying or, possibly preventing, onset of celiac disease. They think that nursing the infant is very important when gluten is introduced. (They don't know whether complete or partial nursing makes a difference.) They think that it is important how much gluten is given to the nursing baby. They are unsure whether the age of introduction of gluten matters when the mother is nursing except that the mother's nursing doesn't help after the age of 2. If the mother is gluten-free during the pregnancy and babyhood that might make her nursing less helpful to the baby, but also it might make it more helpful, especially if the baby continues gluten-free.

In my personal observation of my daughter who has three children, the last two of which are both celiacs and allergic to dairy, she had a horrible time in their pregnancies, but not in the oldest (who has a milder reaction against gluten and dairy). My personal opinion is that going gluten-free and dairy-free during her pregnancy would have helped her. I am more certain of going dairy free.

And from my observation of myself and research, my personal opinion that if one has the celiac gene, one has celiac disease (usually in minimal forms for a long time) from the time one gets their first gluten. This is the research:

Dr Bingley says: “We have found that the frequency of coeliac disease at age 7 is the same as that we find in adults in this country, suggesting that the condition starts in childhood, even in individuals in whom it is diagnosed late in life. They don’t suddenly develop coeliac disease – they’ve probably had it for years before it is eventually detected.”

http://www.clanthompson.com/news_archives_story.php3?story_id=44 & category=Old%20News%20Stories & category_id=2 In short, no gluten ever may be the best thing for a potential celiac.

Here's what I would do based on my belief that if one has the celiac gene, then one will have problems with gluten, perhaps eventually celiac disease. If you, your child or your husband has a problem with milk, then I wouldn't drink milk during the pregnancy. Since there is celiac in the family, I wouldn't eat gluten. (I especially would do this since your husband and child already have to eat gluten-free.) When the child is born, I would get a celiac gene test done. All it takes is swabs rubbed inside the cheeks. I recommend http://www.enterolab.com as probably the cheapest and most complete. If the baby is negative, I would not worry about gluten for him (although a small percentage get celiac disease even though they don't have the celiac gene.

Also, unless you have had a gene test, you cannot know whether it is probable that you do not and would never have celiac disease. If you have not had a gene test, I'd combine mine with someone else in the family--maybe the newborn when he/she comes--and save 10% on the cost of each by submitting them together. In my readings, it appears that insurance companies will usually reimburse you for the cost of EnteroLab, but not always.

Jo Anne

Should I eat GF while nursing??

I have no problems with gluten myself, but one of my sons, my husband, and father in law all were recently found to have CD. Should I consider eating GF while nursing the new baby we are expecting? Our drs don't seem to have had this question before, and I haven't been able to find any medical information other than that nursing generally is helpful for potential celiacs, and some guidelines on introducing glutinous solid foods. Does anyone know whether the gluten would be broken down by my system before it entered the breastmilk? Has anyone had cranky babies whose symptoms resolved by changing your nursing diet? Thanks! Phoebe

[Guest guest]

Phoebe, I read a handful of research on preventing or delaying celiac disease in a newborn. They do not seem to be sure of anything in this area, but they do not think that the mother's milk would bother the baby. If that is so, going gluten-free probably wouldn't make a difference (but maybe it would).

They think that nursing the child up to 2 would make a difference in delaying or, possibly preventing, onset of celiac disease. They think that nursing the infant is very important when gluten is introduced. (They don't know whether complete or partial nursing makes a difference.) They think that it is important how much gluten is given to the nursing baby. They are unsure whether the age of introduction of gluten matters when the mother is nursing except that the mother's nursing doesn't help after the age of 2. If the mother is gluten-free during the pregnancy and babyhood that might make her nursing less helpful to the baby, but also it might make it more helpful, especially if the baby continues gluten-free.

In my personal observation of my daughter who has three children, the last two of which are both celiacs and allergic to dairy, she had a horrible time in their pregnancies, but not in the oldest (who has a milder reaction against gluten and dairy). My personal opinion is that going gluten-free and dairy-free during her pregnancy would have helped her. I am more certain of going dairy free.

And from my observation of myself and research, my personal opinion that if one has the celiac gene, one has celiac disease (usually in minimal forms for a long time) from the time one gets their first gluten. This is the research:

Dr Bingley says: “We have found that the frequency of coeliac disease at age 7 is the same as that we find in adults in this country, suggesting that the condition starts in childhood, even in individuals in whom it is diagnosed late in life. They don’t suddenly develop coeliac disease – they’ve probably had it for years before it is eventually detected.”

http://www.clanthompson.com/news_archives_story.php3?story_id=44 & category=Old%20News%20Stories & category_id=2 In short, no gluten ever may be the best thing for a potential celiac.

Here's what I would do based on my belief that if one has the celiac gene, then one will have problems with gluten, perhaps eventually celiac disease. If you, your child or your husband has a problem with milk, then I wouldn't drink milk during the pregnancy. Since there is celiac in the family, I wouldn't eat gluten. (I especially would do this since your husband and child already have to eat gluten-free.) When the child is born, I would get a celiac gene test done. All it takes is swabs rubbed inside the cheeks. I recommend http://www.enterolab.com as probably the cheapest and most complete. If the baby is negative, I would not worry about gluten for him (although a small percentage get celiac disease even though they don't have the celiac gene.

Also, unless you have had a gene test, you cannot know whether it is probable that you do not and would never have celiac disease. If you have not had a gene test, I'd combine mine with someone else in the family--maybe the newborn when he/she comes--and save 10% on the cost of each by submitting them together. In my readings, it appears that insurance companies will usually reimburse you for the cost of EnteroLab, but not always.

Jo Anne

Should I eat GF while nursing??

I have no problems with gluten myself, but one of my sons, my husband, and father in law all were recently found to have CD. Should I consider eating GF while nursing the new baby we are expecting? Our drs don't seem to have had this question before, and I haven't been able to find any medical information other than that nursing generally is helpful for potential celiacs, and some guidelines on introducing glutinous solid foods. Does anyone know whether the gluten would be broken down by my system before it entered the breastmilk? Has anyone had cranky babies whose symptoms resolved by changing your nursing diet? Thanks! Phoebe

[Guest guest]

Both of my children with CD had colic

until I stopped nursing and started giving them soy formula (one at 4 months,

one at 6 months). Nearly overnight, they were happy babies. There’s no

proof…but looking back, I suspect it had to do with CD. There’s my

2 cents….good luck with your decision! J

Should I eat

GF while nursing??

I have no problems with gluten myself, but one of my sons, my

husband, and father in law all were recently found

to have CD.

Should I consider eating GF while nursing the new

baby we are

expecting? Our drs don't seem to have had

this question before, and

I haven't been able to find any medical

information other than that

nursing generally is helpful for potential

celiacs, and some

guidelines on introducing glutinous solid

foods. Does anyone know

whether the gluten would be broken down by my

system before it

entered the breastmilk? Has anyone had

cranky babies whose symptoms

resolved by changing your nursing diet?

Thanks! Phoebe

[Guest guest]

Both of my children with CD had colic

until I stopped nursing and started giving them soy formula (one at 4 months,

one at 6 months). Nearly overnight, they were happy babies. There’s no

proof…but looking back, I suspect it had to do with CD. There’s my

2 cents….good luck with your decision! J

Should I eat

GF while nursing??

I have no problems with gluten myself, but one of my sons, my

husband, and father in law all were recently found

to have CD.

Should I consider eating GF while nursing the new

baby we are

expecting? Our drs don't seem to have had

this question before, and

I haven't been able to find any medical

information other than that

nursing generally is helpful for potential

celiacs, and some

guidelines on introducing glutinous solid

foods. Does anyone know

whether the gluten would be broken down by my

system before it

entered the breastmilk? Has anyone had

cranky babies whose symptoms

resolved by changing your nursing diet?

Thanks! Phoebe

[Guest guest]

Both of my children with CD had colic

until I stopped nursing and started giving them soy formula (one at 4 months,

one at 6 months). Nearly overnight, they were happy babies. There’s no

proof…but looking back, I suspect it had to do with CD. There’s my

2 cents….good luck with your decision! J

Should I eat

GF while nursing??

I have no problems with gluten myself, but one of my sons, my

husband, and father in law all were recently found

to have CD.

Should I consider eating GF while nursing the new

baby we are

expecting? Our drs don't seem to have had

this question before, and

I haven't been able to find any medical

information other than that

nursing generally is helpful for potential

celiacs, and some

guidelines on introducing glutinous solid

foods. Does anyone know

whether the gluten would be broken down by my

system before it

entered the breastmilk? Has anyone had

cranky babies whose symptoms

resolved by changing your nursing diet?

Thanks! Phoebe

[Guest guest]

Our family's experience: very calm, healthy, breast-fed baby (I wasn't

healthy myself, but that had nothing to do with gluten) who was

wheat-free his entire first year of life. Both his Dad and I have

multiple pollen allergies, so the pedi advised us before he was born

to keep him wheat-free for 12 months, and off regular cow's milk

products until 9 or 10 months. I read every single label, never gave

him Cheerios or goldfish crackers, and am pretty positive he really

was wheat-free. However, he was *not* gluten-free, as I did give him

barley cereal occasionally.

Shortly before his first birthday, we began introducing cow's milk - 1

or 2 ounces mixed in breast milk. Initially, no problem. First wheat

he ever had was his birthday cake. 3 days later, he began showing

signs of of total lactose intolerance - 17 diarrhea diapers in 12

hours! I had to call the diaper service for an emergency extra delivery.

Since then, he has been on a lactose free diet. Over the next 8 months

we figured out that he is also extremely soy intolerant.

Jump ahead a couple years: I was diagnosed as gluten-intolerant. I

began reading about CD, a light went on in my head, and I went back to

the second pedi (I had dumped the one who told me it is impossible for

a person to be both soy and lactose intolerant) reminded him about my

son's digestive intolerances, told him about my own dx of

gluten-intolerance and asked for his opinion. The good news is he

immediately said " Yes, probably celiac, " the bad news is he said try

gf diet, if it helps, we'll do bloodwork later. Well, the GF diet made

a big improvement. Officially, my son has never been called celiac,

but I don't need medical tests to prove what we've already proven -

much healthier child when GF.

Anyhow, back to breastfeeding: I ate a gluten containing diet the

whole time I was pregnant and nursing and it seemed to make no

difference to my son. He didn't drop on the growth curves or show

reactions until he started eating wheat directly.

Maureen

> I have no problems with gluten myself, but one of my sons, my

> husband, and father in law all were recently found to have CD.

> Should I consider eating GF while nursing the new baby we are

> expecting? Our drs don't seem to have had this question before, and

> I haven't been able to find any medical information other than that

> nursing generally is helpful for potential celiacs, and some

> guidelines on introducing glutinous solid foods. Does anyone know

> whether the gluten would be broken down by my system before it

> entered the breastmilk? Has anyone had cranky babies whose symptoms

> resolved by changing your nursing diet? Thanks! Phoebe

[Guest guest]

Our family's experience: very calm, healthy, breast-fed baby (I wasn't

healthy myself, but that had nothing to do with gluten) who was

wheat-free his entire first year of life. Both his Dad and I have

multiple pollen allergies, so the pedi advised us before he was born

to keep him wheat-free for 12 months, and off regular cow's milk

products until 9 or 10 months. I read every single label, never gave

him Cheerios or goldfish crackers, and am pretty positive he really

was wheat-free. However, he was *not* gluten-free, as I did give him

barley cereal occasionally.

Shortly before his first birthday, we began introducing cow's milk - 1

or 2 ounces mixed in breast milk. Initially, no problem. First wheat

he ever had was his birthday cake. 3 days later, he began showing

signs of of total lactose intolerance - 17 diarrhea diapers in 12

hours! I had to call the diaper service for an emergency extra delivery.

Since then, he has been on a lactose free diet. Over the next 8 months

we figured out that he is also extremely soy intolerant.

Jump ahead a couple years: I was diagnosed as gluten-intolerant. I

began reading about CD, a light went on in my head, and I went back to

the second pedi (I had dumped the one who told me it is impossible for

a person to be both soy and lactose intolerant) reminded him about my

son's digestive intolerances, told him about my own dx of

gluten-intolerance and asked for his opinion. The good news is he

immediately said " Yes, probably celiac, " the bad news is he said try

gf diet, if it helps, we'll do bloodwork later. Well, the GF diet made

a big improvement. Officially, my son has never been called celiac,

but I don't need medical tests to prove what we've already proven -

much healthier child when GF.

Anyhow, back to breastfeeding: I ate a gluten containing diet the

whole time I was pregnant and nursing and it seemed to make no

difference to my son. He didn't drop on the growth curves or show

reactions until he started eating wheat directly.

Maureen

> I have no problems with gluten myself, but one of my sons, my

> husband, and father in law all were recently found to have CD.

> Should I consider eating GF while nursing the new baby we are

> expecting? Our drs don't seem to have had this question before, and

> I haven't been able to find any medical information other than that

> nursing generally is helpful for potential celiacs, and some

> guidelines on introducing glutinous solid foods. Does anyone know

> whether the gluten would be broken down by my system before it

> entered the breastmilk? Has anyone had cranky babies whose symptoms

> resolved by changing your nursing diet? Thanks! Phoebe

[Guest guest]

Our family's experience: very calm, healthy, breast-fed baby (I wasn't

healthy myself, but that had nothing to do with gluten) who was

wheat-free his entire first year of life. Both his Dad and I have

multiple pollen allergies, so the pedi advised us before he was born

to keep him wheat-free for 12 months, and off regular cow's milk

products until 9 or 10 months. I read every single label, never gave

him Cheerios or goldfish crackers, and am pretty positive he really

was wheat-free. However, he was *not* gluten-free, as I did give him

barley cereal occasionally.

Shortly before his first birthday, we began introducing cow's milk - 1

or 2 ounces mixed in breast milk. Initially, no problem. First wheat

he ever had was his birthday cake. 3 days later, he began showing

signs of of total lactose intolerance - 17 diarrhea diapers in 12

hours! I had to call the diaper service for an emergency extra delivery.

Since then, he has been on a lactose free diet. Over the next 8 months

we figured out that he is also extremely soy intolerant.

Jump ahead a couple years: I was diagnosed as gluten-intolerant. I

began reading about CD, a light went on in my head, and I went back to

the second pedi (I had dumped the one who told me it is impossible for

a person to be both soy and lactose intolerant) reminded him about my

son's digestive intolerances, told him about my own dx of

gluten-intolerance and asked for his opinion. The good news is he

immediately said " Yes, probably celiac, " the bad news is he said try

gf diet, if it helps, we'll do bloodwork later. Well, the GF diet made

a big improvement. Officially, my son has never been called celiac,

but I don't need medical tests to prove what we've already proven -

much healthier child when GF.

Anyhow, back to breastfeeding: I ate a gluten containing diet the

whole time I was pregnant and nursing and it seemed to make no

difference to my son. He didn't drop on the growth curves or show

reactions until he started eating wheat directly.

Maureen

> I have no problems with gluten myself, but one of my sons, my

> husband, and father in law all were recently found to have CD.

> Should I consider eating GF while nursing the new baby we are

> expecting? Our drs don't seem to have had this question before, and

> I haven't been able to find any medical information other than that

> nursing generally is helpful for potential celiacs, and some

> guidelines on introducing glutinous solid foods. Does anyone know

> whether the gluten would be broken down by my system before it

> entered the breastmilk? Has anyone had cranky babies whose symptoms

> resolved by changing your nursing diet? Thanks! Phoebe

[Guest guest]

That is exactly what happened with my daughter! She was only nursed for

six months, but was very fussy the whole time. After my milk dried up

(and she fell off the chart for weight), I switched her to Good Start,

then Alimentum. She was still fussy. I switched her to soy formula and

she's finally a happy baby!

I've heard that women with undiagnosed CD (like me) have a shorter

duration of breastfeeding. That's been my experience both times. I'm

hoping that now that I'm GF, my third experience (if we have a third) is

better!

Good luck,

Elaine

and Jill McCutcheon wrote:

> Both of my children with CD had colic until I stopped nursing and

> started giving them soy formula (one at 4 months, one at 6 months).

> Nearly overnight, they were happy babies. There’s no proof…but looking

> back, I suspect it had to do with CD. There’s my 2 cents….good luck

> with your decision! J

>

>

[Guest guest]

That is exactly what happened with my daughter! She was only nursed for

six months, but was very fussy the whole time. After my milk dried up

(and she fell off the chart for weight), I switched her to Good Start,

then Alimentum. She was still fussy. I switched her to soy formula and

she's finally a happy baby!

I've heard that women with undiagnosed CD (like me) have a shorter

duration of breastfeeding. That's been my experience both times. I'm

hoping that now that I'm GF, my third experience (if we have a third) is

better!

Good luck,

Elaine

and Jill McCutcheon wrote:

> Both of my children with CD had colic until I stopped nursing and

> started giving them soy formula (one at 4 months, one at 6 months).

> Nearly overnight, they were happy babies. There’s no proof…but looking

> back, I suspect it had to do with CD. There’s my 2 cents….good luck

> with your decision! J

>

>

[Guest guest]

Phoebe-

I have no problem with gluten myself, and have nursed 4 babies while

eating gluten. The oldest was found to have celiac at 3 1/2 yrs old,

no others have it. We waited to introduce gluten to their diets until

after one year of age, and only one other child has food allergies as

well. My 2 year old started losing weight after he was weaned at 16

mos., but has had a negative biopsy. I am currently nursing a 4 month

old, and continued to consume gluten through the pregnancy as well.

> Has anyone had cranky babies whose symptoms resolved by changing

>your nursing diet?

That being said- I have had to remove dairy from my diet while

nursing two of my kids (one is the current baby), as it seems to make

their eczema worse. I have a friend who had to remove wheat from her

diet when her daughter was found to be allergic. Sometimes babies

react poorly to a mom who eats alot of spicy foods as well.

Good luck, when are you due? -Renae

[Guest guest]

Phoebe-

I have no problem with gluten myself, and have nursed 4 babies while

eating gluten. The oldest was found to have celiac at 3 1/2 yrs old,

no others have it. We waited to introduce gluten to their diets until

after one year of age, and only one other child has food allergies as

well. My 2 year old started losing weight after he was weaned at 16

mos., but has had a negative biopsy. I am currently nursing a 4 month

old, and continued to consume gluten through the pregnancy as well.

> Has anyone had cranky babies whose symptoms resolved by changing

>your nursing diet?

That being said- I have had to remove dairy from my diet while

nursing two of my kids (one is the current baby), as it seems to make

their eczema worse. I have a friend who had to remove wheat from her

diet when her daughter was found to be allergic. Sometimes babies

react poorly to a mom who eats alot of spicy foods as well.

Good luck, when are you due? -Renae

[Guest guest]

Phoebe-

I have no problem with gluten myself, and have nursed 4 babies while

eating gluten. The oldest was found to have celiac at 3 1/2 yrs old,

no others have it. We waited to introduce gluten to their diets until

after one year of age, and only one other child has food allergies as

well. My 2 year old started losing weight after he was weaned at 16

mos., but has had a negative biopsy. I am currently nursing a 4 month

old, and continued to consume gluten through the pregnancy as well.

> Has anyone had cranky babies whose symptoms resolved by changing

>your nursing diet?

That being said- I have had to remove dairy from my diet while

nursing two of my kids (one is the current baby), as it seems to make

their eczema worse. I have a friend who had to remove wheat from her

diet when her daughter was found to be allergic. Sometimes babies

react poorly to a mom who eats alot of spicy foods as well.

Good luck, when are you due? -Renae

[Guest guest]

I looked on PubMed to find some answers to this breastfeeding question.

One article says that the gradual introduction of gluten while still

breastfeeding offered the best chances of not developing celiac disease

in early childhood:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=11976167

Another article states that breastfeeding for more than two months

decreases the chances of celiac disease:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=11463995

This article says that waiting two months after first introducing gluten

to stop breastfeeding delays the onset of celiac symptoms:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=9759206

Gliadin passes into breastmilk:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=9867098

Antigliadin IgA antibodies found in breastmilk:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=1403463

This article says that " The transfer of gliadin from mother to infant

might be critical for the development of an appropriate specific immune

response to gliadin later in life. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=3300148

For women with celiac disease, it is important to follow a gluten free diet:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=8677936

So I'm left with more questions than answers. It seems that eating

gluten while breastfeeding, as long as you don't have celiac disease

yourself, offers protection against celiac disease in the child. It is

especially important that the child be breastfed while gluten is being

introduced, and to introduce gluten gradually, rather that in large

quantities. All breastmilk (even that from mothers without celiac

disease) contains antigliadin antibodies (although these antibodies

weren't found in the blood, I don't think). It seems that exposure to

these antibodies is what gives a protective effect to the infant.

So, here's my recommendation: if you personally don't have celiac

disease or gluten sensitivity, then eat gluten while breastfeeding. If

you do have CD or GS, don't eat gluten, because that can cause a shorter

duration of breastfeeding overall (not to mention cause malabsorption

problems in yourself). In both cases, keep breastfeeding while you

introduce gluten (if you do) and introduce it gradually.

I'm not a doctor, so take my non-medical knowledge for what it's worth!

(Not much!)

Elaine

[Guest guest]

Elaine wrote, "So, here's my recommendation: if you personally don't have celiac disease or gluten sensitivity, then eat gluten while breastfeeding."

Elaine, it was a very well-researched summary and conclusion, but here's the rub--

How does one know whether one has celiac disease! The United States government has admitted that the biopsy/flattened villi threshold for celiac disease is too high: "[W]hat is required is a new definition of a gold standard for the diagnosis of CD" [p.4]

http://www.ahrq.gov/clinic/epcsums/celiacsum.htm (This is the site for the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.) They are admitting that the strict cut-off requiring villous atrophy for a diagnosis lacks sensitivity [p.3] (sensitivity means finding all that may have the disease).

They are wondering whether some degree of villous atrophy is even necessary for a diagnosis of CD? [p.3]

What that means is if someone goes through the entire blood test and biopsy shebang and are found negative, that doesn't prove that they don't have celiac disease. Therefore, I suggested that they get the celiac gene test. If they are positive, then they should go gluten-free for the baby while pregnant and nursing. If they are negative, they probably don't have celiac disease although a few percent with celiac disease do not have the celiac gene. So I agree with you that if gluten sensitivity is included, then they probably will definitely know whether they should go gluten-free. The only lab that I know of that does the gluten sensitivity test is http://www.enterolab.com , which is not the gold standard . . . yet.

As a matter of fact, when my daughter found out that her baby boy had celiac, they also found out then that her husband was a celiac. My daughter had no idea that she was a celiac. SHE DID KNOW THAT COW'S MILK AND OTHER ALLERGIC SUBSTANCES COME THROUGH TO THE BABY WHEN SHE NURSES, SO SHE FIGURED GLUTEN PROBABLY DOES TOO. So she stopped eating gluten.

It was a shock when we all realized that she had a problem with gluten. The way we learned that is that she never in her entire life had rosy cheeks. When she ate gluten-free for a while, for the first time in her life, she had rosy cheeks. I noticed this, commented, and asked her if she felt better too , and she said yes. Neither she nor anybody else had realized she had more energy from going gluten-free because her baby was then 8 months old, so she would be feeling better and sleeping better. To see her now, it is obvious that she feels better than she ever did.

I suspect because my daughter's symptoms were so subtle that, if tested, I don't think she would have been found to be a celiac. She went gluten-free for her baby so it is no longer possible for her to have celiac testing. I have been there, done that, and we know never to mess with the gluten challenge. She has not bothered with Enterolab testing because it is obvious that she should not eat gluten. She intends to get the gene test eventually.

Therefore, my suggestion to this mother, who has a husband and child who are celiacs, is to go gluten-free now. When the baby comes, and if he has a celiac gene, then she should continue gluten-free. If not, she doesn't have to worry if she has celiac/gluten sensitivity as far as the baby is concerned. That's a way to do it "on the cheap." If she has good insurance and other resources, she can get tested now for celiac disease and if she does not have celiac disease, she can get the EnteroLab gluten sensitivity test. If she has either celiac disease or gluten sensitivity, she definitely should go gluten-free now.

I personally agree with the research that says if you have the celiac gene, it starts young, period. How could a body's genetic inability to provide the enzyme to digest gluten not give trouble whenever they get gluten! One may not realize it for many years--unfortunately often not until juvenile-type diabetes, thyroid damage, anemia, or osteoporosis, etc., etc., etc. sets in.

Jo Anne

[Guest guest]

Elaine wrote, "So, here's my recommendation: if you personally don't have celiac disease or gluten sensitivity, then eat gluten while breastfeeding."

Elaine, it was a very well-researched summary and conclusion, but here's the rub--

How does one know whether one has celiac disease! The United States government has admitted that the biopsy/flattened villi threshold for celiac disease is too high: "[W]hat is required is a new definition of a gold standard for the diagnosis of CD" [p.4]

http://www.ahrq.gov/clinic/epcsums/celiacsum.htm (This is the site for the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.) They are admitting that the strict cut-off requiring villous atrophy for a diagnosis lacks sensitivity [p.3] (sensitivity means finding all that may have the disease).

They are wondering whether some degree of villous atrophy is even necessary for a diagnosis of CD? [p.3]

What that means is if someone goes through the entire blood test and biopsy shebang and are found negative, that doesn't prove that they don't have celiac disease. Therefore, I suggested that they get the celiac gene test. If they are positive, then they should go gluten-free for the baby while pregnant and nursing. If they are negative, they probably don't have celiac disease although a few percent with celiac disease do not have the celiac gene. So I agree with you that if gluten sensitivity is included, then they probably will definitely know whether they should go gluten-free. The only lab that I know of that does the gluten sensitivity test is http://www.enterolab.com , which is not the gold standard . . . yet.

As a matter of fact, when my daughter found out that her baby boy had celiac, they also found out then that her husband was a celiac. My daughter had no idea that she was a celiac. SHE DID KNOW THAT COW'S MILK AND OTHER ALLERGIC SUBSTANCES COME THROUGH TO THE BABY WHEN SHE NURSES, SO SHE FIGURED GLUTEN PROBABLY DOES TOO. So she stopped eating gluten.

It was a shock when we all realized that she had a problem with gluten. The way we learned that is that she never in her entire life had rosy cheeks. When she ate gluten-free for a while, for the first time in her life, she had rosy cheeks. I noticed this, commented, and asked her if she felt better too , and she said yes. Neither she nor anybody else had realized she had more energy from going gluten-free because her baby was then 8 months old, so she would be feeling better and sleeping better. To see her now, it is obvious that she feels better than she ever did.

I suspect because my daughter's symptoms were so subtle that, if tested, I don't think she would have been found to be a celiac. She went gluten-free for her baby so it is no longer possible for her to have celiac testing. I have been there, done that, and we know never to mess with the gluten challenge. She has not bothered with Enterolab testing because it is obvious that she should not eat gluten. She intends to get the gene test eventually.

Therefore, my suggestion to this mother, who has a husband and child who are celiacs, is to go gluten-free now. When the baby comes, and if he has a celiac gene, then she should continue gluten-free. If not, she doesn't have to worry if she has celiac/gluten sensitivity as far as the baby is concerned. That's a way to do it "on the cheap." If she has good insurance and other resources, she can get tested now for celiac disease and if she does not have celiac disease, she can get the EnteroLab gluten sensitivity test. If she has either celiac disease or gluten sensitivity, she definitely should go gluten-free now.

I personally agree with the research that says if you have the celiac gene, it starts young, period. How could a body's genetic inability to provide the enzyme to digest gluten not give trouble whenever they get gluten! One may not realize it for many years--unfortunately often not until juvenile-type diabetes, thyroid damage, anemia, or osteoporosis, etc., etc., etc. sets in.

Jo Anne

[Guest guest]

Elaine wrote, "So, here's my recommendation: if you personally don't have celiac disease or gluten sensitivity, then eat gluten while breastfeeding."

Elaine, it was a very well-researched summary and conclusion, but here's the rub--

How does one know whether one has celiac disease! The United States government has admitted that the biopsy/flattened villi threshold for celiac disease is too high: "[W]hat is required is a new definition of a gold standard for the diagnosis of CD" [p.4]

http://www.ahrq.gov/clinic/epcsums/celiacsum.htm (This is the site for the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.) They are admitting that the strict cut-off requiring villous atrophy for a diagnosis lacks sensitivity [p.3] (sensitivity means finding all that may have the disease).

They are wondering whether some degree of villous atrophy is even necessary for a diagnosis of CD? [p.3]

What that means is if someone goes through the entire blood test and biopsy shebang and are found negative, that doesn't prove that they don't have celiac disease. Therefore, I suggested that they get the celiac gene test. If they are positive, then they should go gluten-free for the baby while pregnant and nursing. If they are negative, they probably don't have celiac disease although a few percent with celiac disease do not have the celiac gene. So I agree with you that if gluten sensitivity is included, then they probably will definitely know whether they should go gluten-free. The only lab that I know of that does the gluten sensitivity test is http://www.enterolab.com , which is not the gold standard . . . yet.

As a matter of fact, when my daughter found out that her baby boy had celiac, they also found out then that her husband was a celiac. My daughter had no idea that she was a celiac. SHE DID KNOW THAT COW'S MILK AND OTHER ALLERGIC SUBSTANCES COME THROUGH TO THE BABY WHEN SHE NURSES, SO SHE FIGURED GLUTEN PROBABLY DOES TOO. So she stopped eating gluten.

It was a shock when we all realized that she had a problem with gluten. The way we learned that is that she never in her entire life had rosy cheeks. When she ate gluten-free for a while, for the first time in her life, she had rosy cheeks. I noticed this, commented, and asked her if she felt better too , and she said yes. Neither she nor anybody else had realized she had more energy from going gluten-free because her baby was then 8 months old, so she would be feeling better and sleeping better. To see her now, it is obvious that she feels better than she ever did.

I suspect because my daughter's symptoms were so subtle that, if tested, I don't think she would have been found to be a celiac. She went gluten-free for her baby so it is no longer possible for her to have celiac testing. I have been there, done that, and we know never to mess with the gluten challenge. She has not bothered with Enterolab testing because it is obvious that she should not eat gluten. She intends to get the gene test eventually.

Therefore, my suggestion to this mother, who has a husband and child who are celiacs, is to go gluten-free now. When the baby comes, and if he has a celiac gene, then she should continue gluten-free. If not, she doesn't have to worry if she has celiac/gluten sensitivity as far as the baby is concerned. That's a way to do it "on the cheap." If she has good insurance and other resources, she can get tested now for celiac disease and if she does not have celiac disease, she can get the EnteroLab gluten sensitivity test. If she has either celiac disease or gluten sensitivity, she definitely should go gluten-free now.

I personally agree with the research that says if you have the celiac gene, it starts young, period. How could a body's genetic inability to provide the enzyme to digest gluten not give trouble whenever they get gluten! One may not realize it for many years--unfortunately often not until juvenile-type diabetes, thyroid damage, anemia, or osteoporosis, etc., etc., etc. sets in.

Jo Anne

[Guest guest]

Hi Jo Anne. My point was that if someone knows they don't have celiac

disease or gluten sensitivity presumably through testing, then they can

eat gluten while breastfeeding and that will hopefully benefit the baby

based on the aforementioned research. Yes, gluten does pass through the

breastmilk, as do the antibodies, and that's the whole point. That's

what makes the breastmilk beneficial for the baby. It teaches his/her

developing immune system how to properly digest the gluten.

Now, as with all research and advice, this doesn't work in all cases. I

exclusively breastfed both of my baby for five or six months while

eating gluten and one has confirmed gluten sensitivity (through

Enterolab) and I suspect the other one does too.

Anyway, I was answering the question for the woman who said she doesn't

have celiac disease, yet her husband does, and she wondered whether she

should avoid gluten while breastfeeding. My very first email (before the

research one) had said I thought it might be a good idea to be GF, but

then I did the research and decided differently.

For me personally, it's a mute point since I am also gluten sensitive.

Elaine

J. wrote:

> Elaine wrote, " So, here's my recommendation: if you personally don't

> have celiac disease or gluten sensitivity, then eat gluten while

> breastfeeding. "

>

> Elaine, it was a very well-researched summary and conclusion, but

> here's the rub--

>

> How does one know whether one has celiac disease!

>

[Guest guest]

Hi Jo Anne. My point was that if someone knows they don't have celiac

disease or gluten sensitivity presumably through testing, then they can

eat gluten while breastfeeding and that will hopefully benefit the baby

based on the aforementioned research. Yes, gluten does pass through the

breastmilk, as do the antibodies, and that's the whole point. That's

what makes the breastmilk beneficial for the baby. It teaches his/her

developing immune system how to properly digest the gluten.

Now, as with all research and advice, this doesn't work in all cases. I

exclusively breastfed both of my baby for five or six months while

eating gluten and one has confirmed gluten sensitivity (through

Enterolab) and I suspect the other one does too.

Anyway, I was answering the question for the woman who said she doesn't

have celiac disease, yet her husband does, and she wondered whether she

should avoid gluten while breastfeeding. My very first email (before the

research one) had said I thought it might be a good idea to be GF, but

then I did the research and decided differently.

For me personally, it's a mute point since I am also gluten sensitive.

Elaine

J. wrote:

> Elaine wrote, " So, here's my recommendation: if you personally don't

> have celiac disease or gluten sensitivity, then eat gluten while

> breastfeeding. "

>

> Elaine, it was a very well-researched summary and conclusion, but

> here's the rub--

>

> How does one know whether one has celiac disease!

>

[Guest guest]

I am GF for myself and for my kids... they get GF milk from a GF mama.

My daughter isn't eating any solid foods yet, but will be kept gluten

free until she is 2. Because of my CD we waited until 2 to introduce

gluten to our son as well. He has not reacted to gluten (yet?), but we

will be having a blood test now that he is eating gluten regularly

becaue I was asymptomatic until I was in college. Since we know the

gene is floating around in our family we figured it was better safe

than sorry so we hoped to protect our son from potential developmental

interruptions that might have been caused by Celiac-related

malabsorption... we are now doing the same with our daughter.

I have read many stories from mothers on various Yahoo groups

(including celiacsuppoort and celiackids) about how their children were

sickly nurslings and " had " to go on formula because they reacted to the

mother's milk... only years later, after much testing and much

heartbreak did the diagnosis of Celiac come. Technically gluten has

too large of particles to go into the milk, but gliandin (the part that

makes us sick) does not have a large particle size and many mothers can

tell you that it does get into the milk.

julie

---

IM/Yahoo/LJ: Maguire708 ICQ: 54035938

NCSSM '91 Antioch '95

IWG #708 APJ 2/13/02 NEJ 5/13/04

[Guest guest]

Just wanted to thank everyone for their helpful responses. It

certainly seems like the gene test can't hurt, and it will be

interesting to see if the drs have more input when I show them the

research. I'll let you know how we end up handling this issue.

Thanks again, Phoebe