s/o Diagnosing celiac in a toddler

[forty-two]

So dd2 has been sensitive to gluten/wheat? from birth (along with other stuff) - caused horrible, horrible gas, green poops, etc. At the time I didn't see it as a gluten sensitivity so much as white flour/sugar (along with tomatoes, chocolate, peanut butter, garlic, and a few others I forget), so I just cut out everything but ww. As this *also* has the side effect of reducing how much gluten I eat.... Anyway, once I cut out all the above stuff at 4.5mo, she finally had yellow poop again and her gas was better. And then at 6mo her gas improved again (probably b/c of something about the stomach lining doind something at that age :tongue_smilie:).

 

But we when started solids, she reacted badly to Cheerios, rice chex, corn chex, and oatmeal (explosive diarrhea, though now at two she can eat rice chex) and *really* badly to anything with wheat (painful gas). So we wondered about celiac and cut out gluten. But we aren't *perfect* - I know she ends up with trace amounts, which doesn't seem to do much other than *maybe* contribute to extra gas and constipation (a chronic issue with her :glare:). Plus she sneaks some at times (gets into the ww bread, which doesn't *seem* to bother her at all :confused:). And she certainly hasn't had any growth issues or anything. But my mom has gluten sensitivity, though she only avoids ww (which causes obvious, immediate issues).

 

So we thought we'd test, so we'd know how careful we had to be, and if we could go by her observable physical symptoms in giving her stuff with gluten or if we had to avoid it, period. (B/c this is kind of a huge deal to do if we don't *have* to, kwim?) But in reading the other thread, it sounds like testing is a *huge* deal, and isn't even all that accurate in the first place :confused:.

 

So now what? I don't want to hurt dd, but at the same time I don't want her to have to give up all this stuff for nothing, kwim? So far she's been ok so long as we have a gf substitute for everything we are eating at home. But outside the house is an issue - when she was littler we just let her pig out on what gf junk they had that she liked (chips and fries, mostly). But now that she isn't nursing nearly as much, she *needs* to eat more balanced at each meal and it's going to be a *big deal* - again, I just want to *know* that it's necessary, kwim? But apparently that's not an option :glare:. Really?:confused:

[Snickerdoodle]

We have decided not to have testing.

 

Either way, the treatment is the same.

The result of going gluten free has been all the proof that I need really.

 

There is no nutrient found in gluten containing products that cannot be consumed elsewhere.

 

:)

[forty-two]

We have decided not to have testing.

 

Either way, the treatment is the same.

The result of going gluten free has been all the proof that I need really.

 

There is no nutrient found in gluten containing products that cannot be consumed elsewhere.

 

:)

Oh, I know she'd be nutritionally fine. But, and maybe this is just whining, it's just that a strict gf diet is *hard* in American society, and it's doubly hard to maintain it with a little kid who just doesn't understand that she can't have what everyone else has. And since she *can*, apparently, eat some gluten with no obvious ill effects (when she's sneaked ww bread), I'm having a hard time with the motivation for avoiding *all* gluten, not just the gluten that causes her problems.

 

I used to think it didn't matter, cause the treatment was the same - gf diet. But there's a *huge* difference b/w *mostly* gf and *completely* gf - and her physical symptoms just *do not* support her needing a completely gf diet. But since people are always talking about the hidden damage, I didn't want to assume that if she *seemed* fine, she *was* fine. And I thought that the celiac blood test would give me that answer - whether gluten would cause her damage even if she seemed fine.

 

But apparently there *is* no foolproof way to find out if gluten will do her harm :glare:, even an invasive-sounding GI test. So now what? Does she have to be completely gf for the rest of her life on nothing more than a paranoid suspicion of her mother's, that is *not* backed up by observable physical symptoms :glare:? I need something more than that!!!

[JeneralMom]

Please do not take this as sounding harsh, but she either has a gluten sensitivity or she doesn't. If she is eating something with gluten and not always reacting then the problem is probably something else. I would not put a child on a GF diet without consulting your Dr. first. There is a simple blood test first, and then you can choose to do the biopsy. My Dr. recommends going GF for 90 days as the best measure testing for a true gluten intolerance (as opposed to another allergy), but it is very strict....no hidden gluten like in decaf coffee or caramel colour, no soy sauce or anything listed as "spices". I have a bad gluten intolerance to the point where I am deficient in several vitamins and minerals. One of the hallmarks of childhood gluten intolerance is a growth restriction (the child's body is spending more energy fighting the gluten than growing). My 4yo went from 75th percentile in height to 3rd and is thin but with a big poofy belly. She goes from constipated to diarrhea, has dark circles under her eyes, and often complains about her tummy aching. I have chosen not to get her tested (the blood test idea freaked her out) until she is older, but my family doc is pretty sure she has it so we are doing GF with her also.

[Harriet Vane]

Honestly, it sounds like your dd has never been truly gluten-free. She may think that slight discomfort is "normal."

 

Try the blood test first, now, but understand that it is an imperfect measure.

 

Then try a truly draconian gluten-free diet for ninety days. No soy, no wheat, no cheating, ever. At the end of that time, let her have some spaghetti or toast or something, and see what happens.

[grace'smom]

Have you tried having her allergy tested? We tested my daughter at that age and it turned out she had a large number of allergies. When allergies are involved it gets very tricky to figure out if it's a gluten or allergy issue that's causing problems. My daughter has diarhea when she eats foods she is allergic to... She rarely gets hives and when she does they are easy to mistake for bug bites. The diarhea is the only way I know she's consumed an allergic food.

 

We are having her tested for coeliac after Christmas. Her allergies change every year, usually to include whatever we fed her too much of the year before, but this year the wheat came back clean. She's still allergic to all the other grains though (well, corn, barley, oats and rye anyway). So we're wheat challenging her and testing her later. She's done OK so far but her coloring has gone very pale.

 

Anyway, at the toddler age the doctors did request that we wheat challenge her to test for coeliac and we refused. A child's development is crucial in the toddler years. I would not do anything that might deny a toddler necessary nutrition in that time... and anything that is going to give your kid a lot of diarhea is going to deny them nutrition. The vitamins and good healthy fats and proteins go out right along with the rest of it, and your child's brain will not be getting what it needs during a crucial developmental period. My daughter is now six and I feel like it's OK to challenge her now, but I wouldn't then. And I may be wrong to challenge her now too, but I don't feel like I'm messing with her brain development right now.

 

I know how hard it is to have a child who can't eat what everyone else is eating. Food is so heavily emphasized in American culture but you don't recognize it until you can't participate. It causes so many issues that people really can't understand unless they've been there and done that. But there are a lot of benefits to going ahead and keeping it out of her diet now. She WILL get used to not eating what the other kids are eating. My daughter did- it IS heartbreaking to watch sometimes when something comes up that you weren't prepared for and they can't have it, but they do get used to it and they end up OK. Anyway, this goes to say that it's easier for them to get used to not having it now than to try to take it away from them later if you find out it is a real issue. Think about how great and fun it would be to give it back (if it turns out that way) versus taking it away.

[forty-two]

Please do not take this as sounding harsh, but she either has a gluten sensitivity or she doesn't. If she is eating something with gluten and not always reacting then the problem is probably something else. I would not put a child on a GF diet without consulting your Dr. first. There is a simple blood test first, and then you can choose to do the biopsy. My Dr. recommends going GF for 90 days as the best measure testing for a true gluten intolerance (as opposed to another allergy), but it is very strict....no hidden gluten like in decaf coffee or caramel colour, no soy sauce or anything listed as "spices". I have a bad gluten intolerance to the point where I am deficient in several vitamins and minerals. One of the hallmarks of childhood gluten intolerance is a growth restriction (the child's body is spending more energy fighting the gluten than growing). My 4yo went from 75th percentile in height to 3rd and is thin but with a big poofy belly. She goes from constipated to diarrhea, has dark circles under her eyes, and often complains about her tummy aching. I have chosen not to get her tested (the blood test idea freaked her out) until she is older, but my family doc is pretty sure she has it so we are doing GF with her also.

Her doc knows we are gf with her and offered testing, which we had declined at the time, though she said that dd2 certainly doesn't have any growth issues. She does have circles under her eyes, as does her sister, but I'm pretty sure that is environmental, not food-related. She has chronic constipation, but the diarrhea she had as a 12mo to certain foods has disappeared.

 

I'd agree that she either is or isn't, but - and maybe you can dispute this - I'd read that 20% or so of celiac sufferers have no obvious physical symptoms. That they *are* suffering intestinal damage, but that there's no obvious symptoms thereof. And *that's* what I'm worried about, why I just don't go with letting her eat the stuff that doesn't seem to cause problems, and keep her off the stuff that does, and call it a day - why I wanted to get her tested in the first place, 'till I was reading that the tests aren't all that definitive :glare:. Maybe I should just go with strict gf for 90 days and see what happens - if her constipation and gas improves, stays the same, or what - if, as you say, that really is the best measure of a gluten intolerance.

[athena1277]

I don't have a degree, but I have done tons of personal research on Celiac Disease since my dd was diagnosed 6 years ago. So let me clear up a few things.

 

1. Babies who are not on solids yet cannot have CD. Gluten is not in fomula and is not passed to baby by breastmilk. This was a big concern for me when ds was born and this is what all the research shows.

 

2. A gluten-free diet is an all or nothing diet. If you don't do 100% gluten free, you are not gluten-free. It only takes a tiny amount to make a celiac sick.

 

Personally, I would put her on a normal diet and get her tested so you know for sure. Find a good pediatric GI doctor. It does sound like it could be some other problem (maybe allergies) that is causing it. I would want to know for sure what it is, which means a normal diet and a doc visit.

[forty-two]

Honestly, it sounds like your dd has never been truly gluten-free. She may think that slight discomfort is "normal."

 

Try the blood test first, now, but understand that it is an imperfect measure.

 

Then try a truly draconian gluten-free diet for ninety days. No soy, no wheat, no cheating, ever. At the end of that time, let her have some spaghetti or toast or something, and see what happens.

True that - mostly just gf enough that she wasn't having any obvious issues.

 

You think the blood test *is* worth doing, even imperfect as it is? The impression I'm getting is that a false positive is unlikely, but false negatives abound, yes? Which would mean that if she was positive, I could be pretty certain about it?

 

Probably need to bite the bullet and go for it. Gah, and that means *I'll* have to go strict gf, as she is still nursing. Fun, fun, as I'm pg and having enough problems getting enough food, but whatever, I'll manage.

 

I know how hard it is to have a child who can't eat what everyone else is eating. Food is so heavily emphasized in American culture but you don't recognize it until you can't participate. It causes so many issues that people really can't understand unless they've been there and done that. But there are a lot of benefits to going ahead and keeping it out of her diet now. She WILL get used to not eating what the other kids are eating. My daughter did- it IS heartbreaking to watch sometimes when something comes up that you weren't prepared for and they can't have it' date=' but they do get used to it and they end up OK. [b']Anyway, this goes to say that it's easier for them to get used to not having it now than to try to take it away from them later if you find out it is a real issue.[/b] Think about how great and fun it would be to give it back (if it turns out that way) versus taking it away.

The only real symptoms she has are gas and constipation, both of which are always present to one degree or another (which probably points to what I've always kinda known, that we just have her issues "under control" in the sense of mostly not causing big problems, but they are probably lurking all the time :glare:).

 

And the bolded part is the main reason I've not just chucked the whole thing entirely and seen what happened. It would *not* be pretty is I had to take things away again.

[forty-two]

I don't have a degree, but I have done tons of personal research on Celiac Disease since my dd was diagnosed 6 years ago. So let me clear up a few things.

 

1. Babies who are not on solids yet cannot have CD. Gluten is not in fomula and is not passed to baby by breastmilk. This was a big concern for me when ds was born and this is what all the research shows.

 

2. A gluten-free diet is an all or nothing diet. If you don't do 100% gluten free, you are not gluten-free. It only takes a tiny amount to make a celiac sick.

 

Personally, I would put her on a normal diet and get her tested so you know for sure. Find a good pediatric GI doctor. It does sound like it could be some other problem (maybe allergies) that is causing it. I would want to know for sure what it is, which means a normal diet and a doc visit.

This is interesting, as the white flour in my diet *did* cause her problems, and they improved when I cut it out. So whatever that was, not a gluten thing, then. Hmmm. Though her doc did ask whether *I* was gf, since we were nursing - really doesn't matter?

 

And I do know that gf has to be 100% gf to count, so the fact she seems mostly ok as-is either means she *isn't* ok, or it's not a gluten thing. Which is what I wanted testing to confirm - I thought it was better than it apparently is.

[forty-two]

WRT testing, would her having plenty of traces of gluten, but not eating "normally" be likely to tell us anything, as the other thread seemed to indicate that traces weren't enough to trip the blood test. And I *really* don't want to give her stuff that I might then have to take away, kwim?

 

I am inclined to do gf right for 90 days, and see if her gas/constipation issues improve (or if other stuff I never realized was a problem improves), and give her something gluten-y at the end and see what happens. That seem like it might give the most definitive results in terms of what we should be doing (as we really don't have a lot of money for doctor visits and tests, especially with new baby coming).

[grace'smom]

Could it effect her if she is allergic to wheat and you consumed it while nursing? Maybe it's a straight up allergy. It would definitely fit into your description of having it "under control." My daughter has so many allergies we have to feed her foods she is allergic to, but we manage it so that she doesn't eat so many that she has many symptoms. For example, she's allergic to corn at a level 2- we sometimes allow her to have foods with "modified food starch" which may or may not be corn, we're not sure. She displays no real symptoms from this, but if we were to let her chow down on a bowl of popcorn she'd definitely be in the bathroom. Our allergist says mild to moderate allergies are like filling a cup- you can fill it with a certain amount of allergens but you have to make sure you don't let it overflow.

[grace'smom]

This is random too, but have you tried giving her lactose free milk? My daughter gets a lot of gas/diarhea from regular milk but not lactose free.

[Supertechmom]

Honestly, it sounds like your dd has never been truly gluten-free. She may think that slight discomfort is "normal."

 

Try the blood test first, now, but understand that it is an imperfect measure.

 

Then try a truly draconian gluten-free diet for ninety days. No soy, no wheat, no cheating, ever. At the end of that time, let her have some spaghetti or toast or something, and see what happens.

 

This is interesting, as the white flour in my diet *did* cause her problems, and they improved when I cut it out. So whatever that was, not a gluten thing, then. Hmmm. Though her doc did ask whether *I* was gf, since we were nursing - really doesn't matter?

 

And I do know that gf has to be 100% gf to count, so the fact she seems mostly ok as-is either means she *isn't* ok, or it's not a gluten thing. Which is what I wanted testing to confirm - I thought it was better than it apparently is.

 

When we were going through this 4 years ago, there were NO research studies to say that it DID NOT pass through the breastmilk. ANd I was even told about the "it could be a wheat allergy". Well if it passes through my breastmilk enough to be a wheat allergy than why does it not pass through my breastmilk to be a gluten issue. It's the protein that passes through to cause the wheat allergy. 4 specialist could not produce any research studies to prove it does or doesn't. There were none done. My ped finally admitted that was something they learned in med school but there was nothing to substantiate that claim. Maybe there is now.

 

And my oldest was always "okay" His drop of 4 percentile marks when we introduced solids didn't matter because he didn't drop off the chart. My daughter dropped well into the negative growth rate. But he was a big boy at 99% so his drop was like down to 25%. Now at 13 and only 2.5 years gluten free,he is growth stunted due to undiagnosed Celiac as a toddler. And he has Celiaic "mouth" His teeth are pock marked where their are simply holes where there wasn't enough minerals to form the permanent teeth. Once we get braces on and off, then his teeth whitened from the horrific yellow shade they are, then we will see if he will need veneers or some type of filler to cover up all the marks. His gluten damage is only now coming to the surface giving credence to the whole fact that we have false negative test results. I fI knew what I know now, no child of mine from birth to 6 years old would have ever had gluten or dairy EVER! The damage to each one of them is only now rearing it's head.

 

But we didn't know better and relied on faulty info from misinformed drs. One of which was that the test was awesome and would fix our problems. The test only made things worse and put off treatment of a serious medical issue that WILL in years to come cause trouble even if the trouble now is slight or manageable.

 

Sorry for coming off strong but every physical for each kid reveals another little piece that makes me kick myself for not knowing this info in the toddler years.

 

And by doing the diet for the entire household, you may find more who have problems with wheat than you are aware of. THat's how the oldest was discovered.

 

 

Oh and the tips of the villi which are destroyed by gluten produce the enzyme lactase which breaks down the lactose from the milk. removing milk may solve the lactose Symptom but not clear up the damage problem. We had to remove milk until the intestines healed before baby girl could have any milk.

[athena1277]

Please let me say again: Gluten does not pass through breastmilk. My ds was in a research study with the Un. of Maryland Center for Celiac Research from birth to age 3. As part of the study, he was on a strict GF diet until his first birthday. I talked to the doctor and nutritionist there. They assured me that I did not have to be GF to ensure my bf'ing baby was GF.

[Jenny in Atl]

Please let me say again: Gluten does not pass through breastmilk. My ds was in a research study with the Un. of Maryland Center for Celiac Research from birth to age 3. As part of the study, he was on a strict GF diet until his first birthday. I talked to the doctor and nutritionist there. They assured me that I did not have to be GF to ensure my bf'ing baby was GF.

 

This is not my Endo's position, nor that of all the research that has been done. Let me say though that I'm a mega breastfeeding supporter (ex-LLL Leader, etc), and I don't believe a mother should not breastfeed, just alter her diet (better safe than sorry). It's not very hard to be GF these days. Sure, there will be times when your child won't be able to eat what everyone else is eating, but it's not hard to bring a GF treat along in such events. If anything it's a great learning tool about life in general. There are so many kids with all kinds of special diets, that being GF is no longer an oddity.

 

 

(Chirdo FG et al. Presence of high levels of non-degraded gliadin in breast milk from healthy mothers. Scandinavian Journal of Gastroenterololgy 1998; 33: 1186-92.)

 

Presence of high levels of non-degraded gliadin in breast milk from healthy mothers.

Chirdo FG, Rumbo M, Añón MC, Fossati CA.

 

http://www.ncbi.nlm.nih.gov/pubmed/9867098?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=14

 

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.

[Soror]

I would agree w/ the pp's your child has never had a fully gluten free diet, you really cannot determine for sure what is and isn't effecting her. Likely that there could be more than one intolerance, often damage from gluten leads to intolerance to milk and other things as well. I didn't take my son 100% gf(he was already df) until he was 4. Before then I thought maybe it was this or that and sometimes it seemed he tolerated things and sometimes not. I would rationalize and think that it wasn't really the gluten. Well, it really was the gluten and the dairy and I regret that I didn't listen to my intuition sooner.

 

Kids on special diets don't generally go about whining and moaning about how terrible it is, to them it is just life. Well, unless the grown-ups around them make it a big deal. I don't leave the opportunities for accidents, I don't allow gluten food in my house. On the testing it is notorously inaccurate for young kids, I cannot even remember the false negative rate, I would never trust a blood test for a kid. If your child is on gluten already I would do the test, just to see, regardless of the result I would be doing a full-on 100% diet challenge. None of this contamination here and there or sneaks of this and that. She is 4, not 12, it should be fairly easy to make sure there is compliance, assuming cooperation with the other adults.

 

The site: http://www.celiac.com has a message board and lots of good info.

[Staceyshoe]

If there's a definite reaction to wheat, I would try allergy testing first. My ds2 had such HORRID reactions to any bread products which got much worse in the past year. Turns out that he has a wheat allergy severe enough to require we carry an epi-pen for him. But his symptoms are delayed stomach pain (rolling on the floor for hours and hours if he consumes a few bread crumbs) and horrid diarrhea. Because there's a family history of celiac and I didn't trust that he wasn't celiac also, we got genetic testing for him. He does not carry the celiac gene so it is definitely not celiac disease, just an allergy that presents very much like celiac. The good news is that it's very possible he will outgrow this eventually.

[JeneralMom]

My doc mentioned the blood test is about 70% accurate - alot of false negatives. You also have to be eating a regular amount of gluten for it to be effective, which is why he recommends the strict 90 days off. His wife is gluten intolerant so he is really "up" on his information. As for symptoms, people with Celiac's are not a-symptomatic, they are often misdiagnosed with things like IBS, fibromyalgia, psych problems, etc. When I went in to talk to my doc I had spent 8 years trying to figure out what was wrong with me, and he just off hand asked me if he could run some vitamin/mineral tests on me seeing as we talking gallons (not really but felt like it) of blood, and that is when we noticed my severe deficiencies.

 

If you do decide to go strictly GF maybe just give your doc a heads up.