Non-Compliant Celiac Breastfeeding Harmful To Baby?

[sadii7]

Hi everyone, new here, and feeling my way around, but have a scary, nagging concern. Several months ago, I used Enterolab to confirm gluten intolerance, and am pretty sure that it is actually celiac, but of course I've been gluten-free too long to be confirmed as a celiac, rather than just having GSE.

I had a double copy of some of the secondary sort of genes that cause celiac, and I'm sure that my daughter has also probably ended up with two copies, because she had many problems in childhood. She has sent her test in to Enterolab, and results will be in around 1 Dec.

Here the plot thickens. She just had a baby and is not going gluten-free until she sees the results of the test. If she is truly celiac, will breastfeeding harm her baby in any way? Will he be getting good, full nutrition if she isn't? Doesn't seem like he could if she is malabsorbing. Can anyone out there help me with some answers? To be safe later, we've also ordered a genetic swab test for the baby.

Thank you all, a grateful busybody grandma,

Kathy

[Skylark]

Hi, Kathy

Did your husband have a genetic test? Your daughter only gets one of your two genes so unless he also has DQ2 or DQ8, she would only have one copy. I'm not even clear on what you mean by a secondary sort of gene. Enterolab only tests one gene, HLA-DQB1. Enterolab tends to overstate their genetic test results too, as they pretty much say that any HLA type other than DQ4 can confer gluten sensitivity. We have not yet even fully identified the genetic cause of celiac disease. 30% of the US population has DQ2 or DQ8, yet only 1.3% is celiac. Just having the genes does not confer the disease.

Enterolab antibodies are also not diagnostic for celiac. If your daughter is eating a normal diet so she can be tested, she needs to get a proper celiac panel from a doctor. If she's not celiac but has Enterolab antibodies, you might see if you can find an expert on gluten sensitivity in your area as far as the breastfeeding.

[sadii7]

Hi, Kathy

Did your husband have a genetic test? Your daughter only gets one of your two genes so unless he also has DQ2 or DQ8, she would only have one copy. I'm not even clear on what you mean by a secondary sort of gene. Enterolab only tests one gene, HLA-DQB1. Enterolab tends to overstate their genetic test results too, as they pretty much say that any HLA type other than DQ4 can confer gluten sensitivity. We have not yet even fully identified the genetic cause of celiac disease. 30% of the US population has DQ2 or DQ8, yet only 1.3% is celiac. Just having the genes does not confer the disease.

Enterolab antibodies are also not diagnostic for celiac. If your daughter is eating a normal diet so she can be tested, she needs to get a proper celiac panel from a doctor. If she's not celiac but has Enterolab antibodies, you might see if you can find an expert on gluten sensitivity in your area as far as the breastfeeding.

Hi, and thanks for replying.

Below are the results I received. Since my husband and I have been apart for many years, having him tested is not an option. I know Enterolab isn't perfect, but it sure told me a lot I had suspected for years. I had Enterolab tests after having terrible cross antibody reactions which caused terrible chest pain and landed me in the helicopter with contact pads on my chest. These reactions were caused by eating only the tiny amounts that you get from eating a burger with no bun in a fast food place. I had already stopped eating any obvious gluten, especially checking all labels, but since I had a negative blood antibody test, I figured I was ok. After the hospital episodes, (there were several), I determined that even though I wasn't eating obvious gluten, I'd better have some sort of test. I may not be considered celiac, but I'm close enough for me. Below results were obtained when I had decided to become 100% compliant, and had been so for several weeks.

Both my daughter and I have had terrible health problems our whole lives, but no one could ever pinpoint exactly why we were so exhausted, had constant infections of all sorts, terrible allergies, etc. My organs have pretty much been systematically destroyed, liver problems, almost no adrenal function, thyroid problems, and arthritis which is terrible at 54. I don't want to see her go down the same path.

Since realizing that my digestion was terribly compromised, I started the SCD, and then realized the full extent of the damage. It's taken me 10 weeks to be able to even barely tolerate cruciferous veggies again. There is no way that I can yet tolerate any sort of prefab celiac breads, even if they don't have egg, which I'm terribly allergic to. For now it's just meat, fruit and veggies. For the first time since childhood, I feel wonderful, and have energy!

My daughter has had abdominal pain off and on her whole life, and like me, had a negative blood test. I know there is no way she will agree to traditional celiac confirmation, so Enterolab will have to do. I wish that we had anyone to turn to in our area, but we are in a tiny town, and sadly, I know more about all this than most of the docs, I'm afraid, and I don't feel that I know enough, yet. We do have a good NMD, but I'm sure she will try to send my daughter for traditional testing, and she is not a breastfeeding expert. So anyway, I'm certain both of us are positive for GSE, whether it can be considered celiac or not is sort of immaterial, since the results physically, for us, are the same.

So that I can understand my results better, do you have any comments? I realized when I read Enterolab's report that they might overstate, but I think for me, the advice was very good. Any further light on the genetic results would be appreciated, though. I know my daughter only has to have one copy, but whether it's one or two, I'm pretty sure she's got problems.

My results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA 20 Units (Normal Range is le ss than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 other than by HLA-DQB1*0201, or DQ3 other than by HLA-DQB1*0302). Furthermore, HLA-DQ2 genes other than by HLA-DQB1*0201 can be associated with celiac sprue in rare cases. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

Thanks again for all of you being here!

Kathy

And I'll add here that I've always been a careful eater, and even when I did eat gluten, for years, it has not been often, I've rotated foods, tried raw diet, etc. Nothing worked until I went fully SCD, and realized that I just really wasn't tolerating much of anything, but the only allergy that ever showed was eggs.

Thx!

[Skylark]

I love hearing stories of people who feel dramatically better.

I can see why you turned to Enterolab. There are times when the high sensitivity is useful if you are not comfortable without a formal diagnostic test. I do agree that with the dramatic improvement and the TTG result from Enterolab you're probably celiac.

Of your genetic results, DQB1*0202 doesn't confer as much risk as DQB1*0201 but it is associated with classic celiac disease. The DQB1*0604 is not really considered a celiac allele, but the few folks who are DQ6 and celiac tend to get really sick with it. If I remember correctly, Ravenwoodglass is double-DQ6 and she was in really bad shape on gluten.

Here's the thing. With your suggestive Enterolab antibody results, and more importantly your dramatic turnaround off gluten, your daughter NEEDS to try the diet. (You know this... Why am I saying it? LOL!) We don't understand celiac genes very well, but having a first-degree celiac relative is the single biggest risk factor for celiac. If you have a form that doesn't lead to blood antibodies, your daughter may be in a similar situation.

This may sound a little manipulative, but in your case Fine's over-interpretation of genetic risk works in your favor. Your daughter will come back with a "gluten sensitive" gene no matter what, and chances are very good she'll have another "gluten sensitive" gene since Fine labels 98% of common Caucasian alleles "gluten sensitive". Chances are also reasonably good she will have anti-gliadin IgA because it shows up a lot. (Too much to be scientifically meaningful, actually.) Then you push her into trying the diet, since she is symptomatic.

[sadii7]

I love hearing stories of people who feel dramatically better.

I can see why you turned to Enterolab. There are times when the high sensitivity is useful if you are not comfortable without a formal diagnostic test. I do agree that with the dramatic improvement and the TTG result from Enterolab you're probably celiac.

Of your genetic results, DQB1*0202 doesn't confer as much risk as DQB1*0201 but it is associated with classic celiac disease. The DQB1*0604 is not really considered a celiac allele, but the few folks who are DQ6 and celiac tend to get really sick with it. If I remember correctly, Ravenwoodglass is double-DQ6 and she was in really bad shape on gluten.

Here's the thing. With your suggestive Enterolab antibody results, and more importantly your dramatic turnaround off gluten, your daughter NEEDS to try the diet. (You know this... Why am I saying it? LOL!) We don't understand celiac genes very well, but having a first-degree celiac relative is the single biggest risk factor for celiac. If you have a form that doesn't lead to blood antibodies, your daughter may be in a similar situation.

This may sound a little manipulative, but in your case Fine's over-interpretation of genetic risk works in your favor. Your daughter will come back with a "gluten sensitive" gene no matter what, and chances are very good she'll have another "gluten sensitive" gene since Fine labels 98% of common Caucasian alleles "gluten sensitive". Chances are also reasonably good she will have anti-gliadin IgA because it shows up a lot. (Too much to be scientifically meaningful, actually.) Then you push her into trying the diet, since she is symptomatic.

Thanks for the help with the gene interpretation. I have no problem with a little manipulation if it's for the good of someone I love. I've pretty much got her convinced that she should try the diet after getting her results, and although she doesn't want to face having the disease, I'm positive that she really already knows. She's just the sort of person that needs to see it in black and white, right in front of her. Seeing results helped me to decide I wasn't just a hypochondriac, as I had been labeled by my family for so many years. They were also positive that I caused my daughter not to feel well. They didn't have a clue that I kept up the cheering section for years, telling her she was fine, and that she would never have the problems that I did. I guess I was right, she won't, because we've discovered the problem!!! (We were also diagnosed with liver detox pathway errors, which are easy to deal with if you know how.) I wish someone would do a study to see if these genes travel together, so to speak. I'm really curious.

Anyway, after having NICU baby, I wish someone knew something about breastfeeding, though. I might try calling the Lactation consultants in Boise, but it will be just luck if someone knows about celiac/GSE, I'm afraid.

Thanks for all the help, and if you run into anyone that knows about breastfeeding with gluten damage, send them this way.

Kathy (the busybody grandma) I love reading the recovery stories, too, and it's really nice to be one!!!

[tarnalberry]

I don't think that anyone knows. There are a lot of things that they don't know the effect of passing through breastmilk. If the BABY may be celiac, then she should absolutely need to be gluten free, as gluten passes through breastmilk. But it's not so clear whether or not anti-gluten antibodies in breastmilk are a problem.

[sadii7]

I don't think that anyone knows. There are a lot of things that they don't know the effect of passing through breastmilk. If the BABY may be celiac, then she should absolutely need to be gluten free, as gluten passes through breastmilk. But it's not so clear whether or not anti-gluten antibodies in breastmilk are a problem.

Thanks Tiffany!

It's good to know, even if no one knows. I'm going to worry until she goes gluten free, but I guess many people have had gluten problems for years without knowing, and breastfed their babies. Hopefully he gets the nutrients he needs, because he sure had a rough start.

Kathy

[tarnalberry]

On of the amazing things about breastfeeding is that it's moderately immune to nutritional deficiencies in the mother's diet. She will get osteoporosis and iron deficient anemia before her milk has too little calcium or iron.

[Kimbalou]

Hi everyone, new here, and feeling my way around, but have a scary, nagging concern. Several months ago, I used Enterolab to confirm gluten intolerance, and am pretty sure that it is actually celiac, but of course I've been gluten-free too long to be confirmed as a celiac, rather than just having GSE.

I had a double copy of some of the secondary sort of genes that cause celiac, and I'm sure that my daughter has also probably ended up with two copies, because she had many problems in childhood. She has sent her test in to Enterolab, and results will be in around 1 Dec.

Here the plot thickens. She just had a baby and is not going gluten-free until she sees the results of the test. If she is truly celiac, will breastfeeding harm her baby in any way? Will he be getting good, full nutrition if she isn't? Doesn't seem like he could if she is malabsorbing. Can anyone out there help me with some answers? To be safe later, we've also ordered a genetic swab test for the baby.

Thank you all, a grateful busybody grandma,

Kathy

I might be able to help. I was diagnosed with Celiac on Friday. I think I've had it for many years. I've just been ignoring the symptoms, thinking I had a sensitive and nervous stomach. I've breastfed 3 kids and they are all fine and healthy. Is that what you are asking? All of my other blood tests for Vitamin deficiency, etc were normal. My children are all over 5 yrs old now. I am probably going to get them tested for Celiac soon. So, I think the baby will be fine. I am a nurse and I work with babies, most of them are breastfeeding. As long as the baby is getting enough milk, which you can tell by at least 6-8 wet/poopy diapers a day, and the baby seems full after a feeding, then the baby should be fine. Also watch for jaundice...not sure how old baby is. Hope my advice helps.

[Kimbalou]

also, make sure she is feeding baby at least every 3-4 hrs, if not more often. Baby can sleep more at night. Just some general breastfeeding advice. If she hasn't seen a lactation consultant, that would help, but I feel like I am one since I am a nurse and I work with babies and moms. And watch for the yellow skin, means baby could be dehydrated. (jaundice) She should feed for about 10-15 min on each side. Let me know if you need to know anything else.

[sadii7]

also, make sure she is feeding baby at least every 3-4 hrs, if not more often. Baby can sleep more at night. Just some general breastfeeding advice. If she hasn't seen a lactation consultant, that would help, but I feel like I am one since I am a nurse and I work with babies and moms. And watch for the yellow skin, means baby could be dehydrated. (jaundice) She should feed for about 10-15 min on each side. Let me know if you need to know anything else.

Oh, thank you so much! That was exactly what I wanted to know. I wondered about anti-body damage, but I also really wanted to know about adequate nutrition. I'm sorry that you had that experience, but glad you could pass it on. Unfortunately because of his slow NICU, medical coma start, he isn't sucking hard enough to actually breast feed, so she is having to pump and then feed him after still trying each time. We weighed him and he wasn't gaining. As long as she bottle feeds, he gets plenty. She saw a lactation consultant in Boise several times, but he just doesn't open his tiny mouth far enough, and she's tried a finger on his chin, but it doesn't seem to help. His mouth is just tiny, and she is large-breasted, though I don't have the experience to know if that makes any difference. My poor tiny daughter has very large breasts normally, and now they're even bigger, (probably in the G to K range) of course. Any advice there would be greatly appreciated also, as here at home, we have no resources, though we would go back to see a consultant if it was helpful.

Thanks again, very much!

[Kimbalou]

Sorry, I didn't realize he was in the NICU. I work in the NICU, so that paints a whole different picture. Breastfeeding is tough when you have a term baby who was never in the NICU! I understand what you're going through. It;s great that she's pumping and feeding the milk to him. That's great. I hope he does well!

[tarnalberry]

While it may be hard to find, and cost money, I would HIGHLY recommend a THOROUGH search for physical therapists, occupational therapists, and MD's who specialize in breastfeeding. (Open Original Shared Link should help locate someone.) Yes, it may be expensive, but it's cheaper than having to use formula in the long run, (both in health care costs and straight up cost of the formula) so don't use that as an excuse for not looking. (Insurance will usually cover this under therapeutic services, as well. All of it, except the PT who just didn't work with insurance companies, was covered for us.)

Daphne was normal weight, no problems at birth, but also didn't open her mouth very wide. She didn't have a tongue tie (but a couple of my friends did - two front tongue ties and one posterior tongue tie - this should be evaluated for AND TREATED!), but we needed two and a half months of working on OT and PT exercises before she was feeding well. (I was fortunate to have an oversupply, which may have caused part of the trouble, so she never had weight gain issues. But it was two and a half months of tears streaming down my face and difficulty bonding because it was so intensely painful.)

Also, she may want to hand express for a bit longer *after* pumping, as pumps are never as efficient as a baby at getting out milk. She may be able to empty a little more that way. (Particularly in the first few days, when breastfeeding is still hormonally run, rather than supply/demand, the more often there is nipple stimulation and milk/colostrum removed, the more prolactin receptors are put down in the breast tissue, which sets the stage for good lactation for the rest of infancy. She may or may not be past this stage, but even if she is, hand expression may help her get plenty of milk and KEEP getting plenty of milk.)

I'll be honest, while they are very valuable, the folks I worked with gave me all kinds of different advice, and some of it was just having to find our way with all that advice. And waiting for her to catch up, developmentally, to be able to eat well.

[Laennie]

I do not have an official diagnosis but believe that I have celiac disease (negative blood test but started gluten-free diet on doctor recommendation, very positive results, don't want to go back to gluten for biopsy). I seem to have mainly had neurological symptoms starting around Junior High. After 3yrs of trying I got pregnant I finally did & actually felt better while I was pregnant than I had in a long time. First time in my life that I didn't get sick when people around me were sick. I had a strange episode of SVT (superventricular tachacardia) 2 weeks prior to having him, they thought he was big & since I was having an elevated heart rate my doctor decided best to do a c-section to rule out any possible heart problems during delivery.

My son would latch but not stay on so I started pumping. I pumped for 15min every 2hrs for several weeks, then slowly cut back to about every 4hrs. I produced about 60oz or so a day. I froze all my extra & once I went back to work he started getting some frozen during the day but still fresh when he was with us. I did this for 6 months while eating gluten. Around the same time that I went back to work (2months later) I started having all these GI problems suddenly. It seems like giving birth to him turned on the GI symptoms finally. He never got sick until he was 7 months old which by then he was strictly on frozen breast milk. Thankfully even though it was bronchitis he didn't get too bad. I had it first & developed pneumonia within 2 days & everyone else in the family ended up with the bronchitis as well. He is underweight but his doctor hasn't been concerned because he's very active & seems healthy. Now that I'm fairly positive I have Celiac Disease I have started to worry about him a bit more. I have been thinking of looking into the genetic testing.

My point is that it seems like even though I shouldn't have been eating gluten for my own health it did not seem to affect my son negatively while I was breast feeding him. In fact it wasn't until after he started eating more solid foods that he fell so far behind on weight. Not sure if there's a coincidence there at all but that is also when he started moving around more so who knows.

[SGWhiskers]

A couple of thoughts. Some Speech Language Pathologists (speech therapists) specialize in neonatal feeding as well. I don't have any idea about the effects of antibodies in breast milk on a non-celiac infant, but I would suspect the malabsorption would have similar effects that the malnutrition of an anorexic mother would have. I have to image that there is some research on anorexia/bulemia and breast feeding that either a lactation consultant or a dietitian would have available.

I hope your daughter gets her answers soon and gets gluten free quickly. Best wishes to for a rapidly growing grandchild.