Hi. My 9mo, Tommy, just had allergy testing a few days ago and tested negative to everything, so the allergist did blood tests for celiac and we're waiting for the results. I'm not sure how accurate the test will be since he's a baby and was already gluten-free for a month. His doc said to stick with the gluten-free/cf diet no matter what the test results were since it was the only way to get him to stop puking and screaming. Anyway, I was sure he was just allergic to wheat and milk but since his tests were negative I began reading up on celiac and now I'm sure he has it, as well as my husband, 4yo son Jeffy, and 5yo daughter Shirley. But there's just one problem with that theory. Tommy has been throwing up since his very first feeding.

Jeffy never threw up or even spit up at all, but he did nurse constantly even though I had tons of milk and he was fat, fat, fat. His stomach was a bottomless pit! And from the ages of two to four he wore 18 mo. or 24 mo. clothes, even though he was in the 95% for weight and 45% for height. Doctors actually told me to get his weight under control or he'd become obese...and his ribs were showing! I never worried because he was very strong (he does chin ups, moves the couch, picks up his big sister, etc) and seemed healthy. I didn't believe him when he always complained about his stomach hurting. "Come on, every day? Does it REALLY hurt?" Now I feel bad. I think he was telling the truth.

Shirley has been constipated since she was 2 1/2 following a severe case of diarrhea.

Well, my question is, can a baby be born with celiac disease from exposure to gluten in the womb? Can gluten cross the placenta?

a baby can be born with celiac disease, and it doesn't even require exposure "across the placenta". gluten is found in breastmilk, so if you are breastfeeding, and eating wheat, he'll get it. birth can be enough of an event to trigger the genes.

My oldest dd had it sence she was born. she had problems from the first day of life. She was breast feed and at birth she was only 5lb 15oz. The doctor said she was 2 weeks overdue also. yes you can be born with it and it can go through breast milk and though the placenta. My other two was not as bad but got worse as time went on. your middle kid sounds just like my middle dd. she was my big kid but had emoitonal problems and stomic aches. We went on a gluten free diet she is 95 % better and she has not gain in wieght but a couple of pounds but she has shot up in hieght. she has lost her pot belly and looks good. she does have thick bones but she is not over weight any more.

Jodele

P.S You have a great Doctor keep him!!!

My daughter was born with celiac. My husband and I used to joke about her "smoker's caugh" as a baby. Now I look back and think, "Why wasn't I concerned?" Her esophegus was being damaged by her reaction to gluten.

By the way, neither I nor my spouse are smokers.

It took us two years to find out Annie was a celiac. I hope you have better luck than we did. By the time we discovered that Annie was a celiac, she was really, really sick at age 2. Her "smoker's caugh" is gone now, along with other symptoms which appeared as time went on. Best of luck to you.

Jeffy certainly has emotional problems. Besides being extremely clingy as a toddler, now he's aggressive, mean, a screamer, still throws temper tantrums, and I wonder if he might even be depressed. Most days I want to strangle him Homer Simpson style because of the way he acts and the things he does (climbs out windows naked and runs down the street, picks the baby up when my back is turned, has intentionally broken three windows, literally climbs the walls like a rock climber after putting deep dents in the dry wall). I think he might have adhd. And Shirley has almost all of the signs of dyslexia for her age range (Just begining to read). I wonder if these things could possibly be related to celiac disease.

Tommy's allergist to me to stick with the diet no matter what. The kids' family doctors that they've gone to over the years have bullied me about their weight. They don't care that Jeffy's toenails fall off or that Shirley's speach is worse now than when she was a toddler or that Tommy stopped babbling for three months and acted like a little zombie. There's absolutely nothing wrong with these kids except they're fat!

I would say that no, a baby cannot be born with an autoimmune disease of any kind (including Celiac), or that it would be next to impossible. If the trigger for autoimmune diseases enters throught the gut, as all current new research suggests, the child would need to be born for this to happen. It looks like a virus may be needed to trigger autoimmune diseases such as Celiac Disease. That said, this exposure can happen at any point once the baby is born. Generally though, autoimmune diseases in infants are rarer, but they do occur and doctors need to consider it as a possible Dx.

You need *both* the genetics AND the trigger(s) to cause Celiac Disease, before you will react to gluten, from what is understood.

Now, since all babies are born with a "leaky gut" to some extent, many often react to gluten and casesin *without* having Celiac Disease. Most of these babies will learn to tolerate it at some point, unlike Celiac Disease. These babies will get some GI (stomach) symptoms, but not intestinal damage. When did you stop breastfeeding, and introduce solids?

That said, some babies may also have some sort of intolerance to gluten that is strictly genetic (not Celiac). This may be present from birth, such as an enzyme deficiency, etc.

As for the other question, gluten does not normally cross the intestines in "normal" (non-Celiac) people, or not in any sort of large amount. Otherwise the person will have an "allergic" type reaction, just like a Celiac. Most people do not absorb whole foreign proteins through their intestines, which is why most people are not Celiac.


Now, if you *were* Celiac/had a "leaky gut", this could happen, but since your son would have not been exposed to the initial trigger for Celiac (a virus, etc.) he would not develop a true Celiac response. However, being a pregnant Celiac in itself can be harmful to the unborn baby and pregnancy if a strict gluten-free diet is not followed.

This is my understanding.

I do agree with Tarnalberry that *some* gluten may cross into breastmilk (I am pretty sure it can, but I can't say 100% so I'll say "may" ). The mother of a Celiac baby must be gluten-free. Crossing over in breastmilk is less likely to happen if the mother did not have Celiac, though. Once gluten is broken down in the mother's body, it is harmless to Celiacs.

Please make sure these kids get to a normal weight. If they are truly overweight (and not bloated from Celiac), then they are at risk for severe health problems, early death, and obesity down the line. If they develop insulin resistance (a precursor to Type 2 diabetes) as children, this can affect their blood sugar levels, and thus their learning ability, mood, and behavior. I agree that you found a good doctor and that you should keep the baby gluten-free (and the other kids if they respond to the diet), but he gets a "F" from me for not stressing the weight issue.

Your kids may or may not have Celiac, but the other symptoms you describe can be associated with blood sugar issues (although they are also common in "normal" kids as well).

See where things go with the diet, stick with your doc, and go from there!

My advice would be to take all of your kids off of gluten for the rest of the summer and have no gluten whatsoever in the house. Cook healthy gluten free meals (to save time cook a lot at once and then freeze it) See if all of your kids lose weight/feel better on the diet. A lot of people have neurological symptoms related to it (mine make me appear to be dyslexic and add), but it really is just 'brain fog'. There is no harm going off gluten, and if they start feeling better they will do better in school next year. My bf is not gluten sensitive, but eats gluten free because of me, and his add symptoms have gone way down. Even if your kids don't have gluten issues, it is easier for you to make one meal!

Finally, overweight kids are problematic because it leads to a whole array of nastiness down the road. You will do your kids a giant favor of cutting down any processed foods they eat now and helping them figure out what is causing weight gain (and it is most likely gluten). Also, sports and karate really help with add and learning disabilities. Check to see if your local Y or elementary school has programs, or at the very least, take them to the park to run around a lot. They will feel a lot better and you will get your doctor off of your back :-).

Children can be born with a genetic predisposition to celiac disease, but it cannot manifest itself until he/she is exposed to gluten. I'm glad your MD is considering gluten as a culprit. Many doctors have their heads in the sand about the subject.

Not trying to threadjack, but several of you have mentioned that Gluten is present in breastmilk. It is my understanding that gluten CANNOT be present in breastmilk - see this Clan Thompson link from Dr. Fasano:


I would be interested to see what sources any of you have that there is gluten in breastmilk. Just trying to get the whole picture, as my one-year-old is still nursing.

I am with you on the breastmilk issue. I used to say it cannot be present, but people would insist it can! So I now say "may". The reason I say "may" is that someone with Celiac or a leaky gut who is not gluten-free *in theory* can *possibly* pass gluten into breastmilk.

I also want to add that gluten is (probably) not the only thing needed to trigger Celiac Disease.

I cannot point you to a link, but most discussions I've read in the past seem to agree that babies are not born with active celiac. Even if they are exposed to gluten early, it takes time to build up the anitbody response. I do know hat the antibody test is not considered accurate until about age 2.

richard

Scand J Gastroenterol. 1998 Nov;33(11):1186-92.Links
Presence of high levels of non-degraded gliadin in breast milk from healthy mothers.Chirdo FG, Rumbo M, Añón MC, Fossati CA.
Center for the Investigation and Development of Cryotechnology of Foods, Dept. of Immunology, School of Exact Sciences, UNLP, La Plata, Argentina.

BACKGROUND: Secretion of dietary antigens into breast milk has been extensively documented. The presence of these antigens is of relevance because they could be involved in the modulation of the immune response in neonates. The objective of this study is to determine the gliadin concentration in milk, colostrum, and serum samples from healthy lactating mothers on a normal diet. Gliadin levels in milk samples from a group of six mothers after a brief period of gluten restriction were also determined. The molecular weight of secreted gliadins was also analysed. METHODS: Gliadin concentration was determined with a highly sensitive competitive enzyme-linked immunosorbent assay, modified so as to eliminate anti-gliadin antibody interference. The level of gliadin/IgA anti-gliadin immune complexes in milk, colostrum, and serum samples was determined. RESULTS: Gliadin was detected in all 49 milk samples. Its concentration varied between 5 and 1200 ng/ml (mean, 178 ng/ml). In colostrum (n = 14) gliadin levels were higher (range, 28-9000 ng/ml; mean, 883 ng/ml), not being detectable in one case. Gliadin was detectable in 14 of 31 serum samples, in which levels were lower than in milk and colostrum samples (mean, 41 ng/ml). Neither a correlation between gliadin levels in milk, colostrum, and serum samples from the same subject nor a relation between gluten intake and gliadin concentration in milk samples from six subjects under a 3-day gluten-free diet could be found. Higher levels of immune complexes were observed in colostrum samples than in milk and serum samples. No correlation was detected between gliadin concentration and the level of immune complexes. The analysis of milk and colostrum samples by immunoblotting showed bands of immunoreactive gliadin presenting Mr similar to those of native proteins from wheat extracts. CONCLUSIONS: Very high levels of gliadin were detected in milk samples from healthy mothers on an unrestricted diet. Gliadin levels were higher than those reported for dietary antigens in other studies. Breast milk contained non-degraded gliadins and gliadin/anti-gliadin IgA immune complexes.

Acta Paediatr Scand. 1987 May;76(3):453-6.Links
Passage of gliadin into human breast milk.Troncone R, Scarcella A, Donatiello A, Cannataro P, Tarabuso A, Auricchio S.
Samples of breast milk were taken from 53 women following the ingestion of 20 g of gluten. The samples were analysed for the presence of gliadin by a double-antibody sandwich enzyme immunoassay. Gliadin (5-95 ng/ml) was detected in 54/80 samples collected at various stages of lactation. Maximum levels in milk were found 2-4 hours after ingestion; gliadin could not be detected in serum. 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.

Another thing I want to add is that gluten is NOT the initial trigger for Celiac. Simply having the genes and being exposed to gluten is not enough. A good example is identical twins raised together. Often 1 will develop Celiac (same genes) and the other will not. Both will have been exposed to eating gluten and the same foods. And yet, there is not 100% of cases where both twins have the disease. There are other factors needed for the disease to develop.

"The exact cause of celiac disease is unknown. The development of celiac disease requires a genetically predisposed person who is eating wheat, rye, oats, or barley. Even if these two factors are present, celiac disease may not develop until a "trigger factor" starts the abnormal immune system response. Sometimes, a viral illness appears to be that "trigger." "

from http://www.enabling.org/ia/celiac/

You need a trigger to turn celiac on, in conjunction with the genes. However, gluten is the trigger that sets off the autoimmune reaction. Trigger can mean two different things in these discussions.

"For celiac disease to be active, the celiac must have the genetic potential to develop the disorder, there must be a source of gliadin in the diet, and there must have been a trigger factor. "

I appreciate you posting those studies. Since Dr. Fasano says it isn't, and the studies you posted says it is, the jury still seems to be out. We did introduce gluten to my daughter who is still breastfeeding in the "magic window" reccommended by the AAP, but have since taken her off it. She is also getting no gluten from me, as I have celiac disease and am gluten-free. Her peditrician feels that we have done as much as we possibly can to protect her from celiac disease.

More information is always good!

What bothers me about these doctor's talking about my kids' weight is that my kids aren't chubby at all. They're the perfect size, it's just the number on the scale that's too big. I admit that I give them frozen burritos and mac and cheese too often, but other than that they eat a wonderful diet. They even like salad! When they had their first app with their current doc, she came into the room looking at their charts and said, "What do they typically eat in a day's time?" Right off the bat. We discussed it for a minute then she picked Shirley up to put her on the table then said, "Are you sure they don't eat lead weights?" She took Shirley's shirt off and couldn't believe that such a heavy girl didn't have fat rolls hanging over her belt.

The point I was making is that I have had several concerns about their health and every doctor they've gone to has dismissed my concerns. Like Jeffy's allergic shiners. I didn't know what they were at the time, and still I'm not sure if Jeffy has allergies or if celiac may be to blame, or if there's another reason for them, but I just wanted to know why my little boy looked like he had two black eyes. I wanted to know why his fingernails were flat and his toenails were concave (like spoons). The response? "That's just the way they are." In my original post I wrote that Jeffy wore either 18mo or 24mo pants from the ages of two to four. He finally outgrew them over the winter. I brought this up at check-ups but when he was weighed it was always, "He's overweight for his height." Well, body builders are overweight for their height, too! Would you call Arnold Schwarzenegger fat?

Maybe I should have posted this in the section about dealing with doctors. :-)

As their mother, you know your kids best. Based on your description, it is possible that Jeffy has Celiac and/or a nutrient deficiency or allergies. It is true that testing is less reliable in young children.

What other symptoms do your kids have that you have not mentioned? What have they been tested for, and were all results normal?

It's really hard to say if all or any of your kids have Celiac, allergies, or are basically perfectly normal kids with "normal" childhood issues.

The important thing is that they feel better, and if that is b/c of the gluten-free diet, then you need to keep them on it. However, if they *do not* get better, or the symptoms come back, continue to work with the new doctor. I would be cautious about cutting out foods in growing children that may not be a problem. Then you may get issues like vitamin deficiencies and a lack of nutrition.

I don't know how to explain the weight issue, aside from the fact that parents often don't recognize their overweight kids as being overweight. This is why Type 2 diabetes (the preventable adult onset type that is related to obesity) is becoming a problem in children. Nobody wants their kids to be sick, but yet this is happening. I would think they are just muscular kids, but you did mention that the baby wears a large size for his age. I think the doctors are just concerned, and you can't blame them in today's "SuperSize Me" world. Either way, keep up with a healthy gluten-free diet and see what happens.

As for the baby, has he had a full physical? Have they checked for enzyme deficiencies? Did anything come back abnormal? Does he seem to be getting better or worse with time?

This quote is simply fascinating IMO. And I wonder if a certain subset of infants/children are being affected by the following.

I've often wondered if the "abnormal trigger factor" could be a specific vaccine? I mean...aren't vaccines specifically made to trigger an immune response in a totally abnormal way (some using live viruses)?

I've also wondered, (in light of the SV40 information), if the virus that triggers celiac could be present in certain vaccines and that we've never been able to screen for it because we just haven't known it existed until now? Does anyone have information on this?

I have to wonder about it at times because my dd had major problems from VERY early on. We didn't figure out it was gluten, casein, eggs, soy, food colorings and artificial sweeteners until she turned 15 months (dd was breastfed but I wasn't avoiding those foods because I'd never heard of celiac disease and I had no apparent health issues). There were 3 vaccines in particular where things got exponentially worse....Hep B, DTaP and the flu shot. Dd was over a year old when she got the flu shot. She'd been eating eggs for a several months prior with absolutely NO problem. Within 2 weeks of the flu shot, she began having major reactions to eggs and then major D began occuring within minutes of consuming eggs. She also began reacting to artificial sweeteners and food coloring at that time.