Celiac Disease in Toddler- unconfirmed by tests

[LeoneLover13]

Hi there,

I guess I am in here for some support and info into Celiac Disease in toddlers. For about 2-3 months my DD (just turned two) had horrible diarrhea on and off, progressively getting worse and worse. Eventually I took her into the Dr about a month ago and they did a blood test which showed she was profoundly anemic....more tests, more tests and more tests and they decided she had something called Transient Erythroblastopenia of Childhood, a temporary blood condition where your red blood cells stop production for what ever reason. The only treatment for that is continually monitoring her red blood cell count to be sure it is rising and not dropping to the levels of needing a transfusion. We have been going in once a week for those tests and she has shown very slight gaining. During this whole mess (worst 2 weeks EVER) the Drs pushed the diarrhea issue to the back burner to concentrate on her blood issues and informed us that it is not related to the TEC blood condition.
Anyway, I was not pushing the diarrhea issue to the side because she was clearly very sick and progressively getting much, much worse. I started journalling her diet and bowel movements every day and we decided to try a gluten free diet because my MIL was diagnosed with Celiac Disease 4 years ago. We also asked them to test for Celiac during her immense about of blood tests.
Well, since we started the diet almost 3 weeks ago, the change has been incredible. She has consistently normal bowel movements 90% of the time now and if she does get sick I can usually trace the reaction to contamination of gluten through something I ate (I am still BF her once a day) or she ate when we eat out. We received the Celiac blood test results back and they claim negative.
Now, I know that testing such a young child is hard to do and even if the tests come back negative there is plenty of possibility of still having the disease but I am convinced at this point that she has Celiac Disease. Not just an allergy to wheat, the disease itself. We have a history of auto-immune disorders on both sides of our family, one of which being MIL who like I said has the disease.
If we are continuing our diet and reducing the chance of contamination, is there any reason I should be taking her in to get a formal diagnosis? I desperately do not want to put her through an intestinal biopsy but am concerned that I should be getting her evaluated more if I believe she has the disease. There is no treatment for Celiac, other than diet, but should we be investigating how bad it could be? To see if she has villous atrophy or not? Does it matter?
We plan to see a nutritionist, but I am weary of going to a GI specialist because of invasive tests and the already negative test of her having Celiac having more weight with Dr's than my thoughts, experiences and journaling of her diet.
Has anyone been through a diagnosis with their toddler?

[Aridel]

The tests for celiac will not be accurate in a child who has not been consuming gluten. To get an accurate test, you would have to let her eat gluten products, not just once but over a set time period, and risk dealing with a sick toddler again. IME, the benefit of having a GI diagnose something like this is that it gets you taken more seriously, such as when explaining to schools what she can and can't eat. It probably isn't worth it - if you are comfortable advocating for her at situations which involve food, just go with what you're doing already.

She's got enough medical stuff going on right now, give her and yourself a break and keep her as healthy as you can. If you have to worry about official on-paper diagnosis, do it later!

Good work Mama, you are going to the doctor for what he can treat, and working on your own to prevent further illness. I think you're doing everything right!

[mom2happy]

PP is right. In order to see if the villi are damaged the person has to be on a gluten diet.
It sounds like you have figured it out.
While your baby's health is in this condition I wouldn't even mess around with putting him back on gluten to get the invasive test that requires anesthesia.
If in a year or two you want to try it you can.
I know there's always the concern that it could have been a coincidence that her health improved immediately after. You will also worry that you are causing a lifestyle change that might not be necessary.
Maybe if you could all give up gluten? (it sure isn't great for anyone anyway IMHO.) It would be hard at first.

[HRJ]

Our pediatrician tested my son for celiac using a new test. It is a genetic test that breaks down every genetic possibility for celiac. It is a new test and she feels it is better than the old blood test. For this new genetic test, you do NOT have to be eating gluten for it to work.

My nutritionist and her entire family is celiac. her only thing about doing the scope is that you can see a remarkable difference w/ the diet alone and not worry too much about cross contamination as far as symptoms. But if you have the scope and know for sure, then you know that the entire house has to be gluten free, and that you have to throw away your old pans you cooked things w/ gluten in, etc. Bc you can still get cross contamination w/ no symptoms and think you are fine and still be causing damage to the gut.

I do believe that you can get diahhrea and malaborption issues from other food allergies as well. For my son, he had horrible bathroom problems w/ other food allergies. You have to trust your instinct.

I don't know if you could find a dr that knows about the new genetic blood test.

[HRJ]

Also, I don't know where you live, but my local gluten free bakery (that is AMAZING) is starting to ship. We are in OH. And unless you live in OH or Indiana, you have to pay overnight shipping. So the farther away you live, the more expensive. But her stuff is just AMAZING! Better than anything I have bought in the health food stores or made.

[sunnygir1]

The fact is that your lo could have a gluten allergy or intolerance without having celiac. I wouldn't bother with the test/diagnosis at this point because you still have total control over you lo's diet. If you put your lo in daycare or school, then you may have to get a note from a dr to insure that they don't feed your child foods that contain gluten.

We don't do gluten, as most of my family is intolerant, but I don't know that much about Celiac, so perhaps there is a reason to find out more at this point.

[tanyalynn]

Your plan sounds reasonable to me.

If you haven't already lurked, or said hi, in the Allergies forum (a subforum of Health & Healing), you may want to. Most people there are gluten free, a few have celiac (not us), and I found it a helpful place to get support and ideas for feeding us gluten (and dairy) free, and for picking up ideas on how to heal from the imbalances that are involved in the various health issues we've got.

At some point, you may also (if you haven't already) want to discuss whether your DH could have celiac that just isn't as obvious as your DD's. Gluten causes such a wide variety of symptoms in people, even celiacs seem to present in a wide range of ways.

[LeoneLover13]

Thank you for all the replies!

I was lurking in the Allergies forum last night and found out about the tests needing for the child to be on gluten for up to 4 months. When the blood they used for the Celiac test was taken, she was on gluten, we had not really started the diet at that point, we were thinking about it and didn't know any different about the test and neither did the Drs. So even still I don't know if she was on 'enough' gluten for the test because at that point I had stopped bread as an initial thought of starting the diet.
Either way, there is no way I would put her back on gluten..that seems crazy to me. What if she really has Celiac and I am pumping her full of gluten for months on end, making her sicker and sicker and causing horrific damage to her gut. Plus, she is extremely sick when she is on it. Vomiting, terrible diarrhea, exhaustion, I'm not doing that to her so the Drs can agree with me that she has celiac. Beside that, we live on Guam and there is no GI specialist here.

As far as her having a possible wheat allergy rather than celiac..I have been over and over this in my head and online and I am almost 100% sure it is celiac. How would one know the difference between an allergy and the disease without testing?

-She is predisposed for it and other auto-immune disease.
-She has repeatedly fallen on the growth chart since she was born. Beginning at 85percentile when she born and falling into the less than 1percentile a month ago.
-When she began with diarrhea I tried every elimination diet out there..except wheat, until now and it is the only diet that has caused her diarrhea to literally disappear.
-She has lost 2-3lbs in the past 3 months because of vomiting and diarrhea.
-She is 2 and weighs 21lbs.
-She has a distended belly, is very thin (thin, not slender) and has lost any little butt she had before.
-Every time she been sick in the past 3 weeks of the diet, I can trace it to possibly contamination. Usually when we eat out.
-She has turned a 180 since we started the diet.

Everything I have read and know about it, explains her issues completely. I don't know how far to go though, which was my initial question of should I get her tested further. I don't know if I should change all my pots and pans, dishes and containers etc. DH is superman in our house, he has no allergies to anything (nothing obvious anyway) and can eat anything with his steel stomach. So far, he is not GF with us, I am only because I am still BFing her. But there is much more risk for contamination when making him PB&J's for his lunch. I don't know to ask him to go GF with us since there is no 'official' diagnosis.
Again, thank you for any help anyone can offer. I will go lurk in the Allergies forum some more now

[HRJ]

You could try allergy testing to try to rule out the wheat allergy. That would be easier than the scope. then if it's negative, you'd be more inclined to think it is celiac.

My nutritionist told me that when they found out they were celiac, they'd completely removed gluten from the house. Visitors are not allowed to bring food/gluten in. But she had one Le Crueset pan in the garage left over from 'before'. Months after going gluten free, she pulled it out of the garage and cooked in it (she thought it was too expensive of a pan to get rid of). She ended up having such bad celiac symptoms that she ended up in the ER. She won't let anyone in the house w/ gluten containing foods b/c of the risk of cross contamination. That's why she recommends either the genetic test or the scope. She's had the genetic testing done on her and her family and is a believer in it. But she says if you just have an intolerance, you don't have to be as concerned about cross contamination.

[mamafish9]

Originally Posted by HRJ

But she says if you just have an intolerance, you don't have to be as concerned about cross contamination.

There are people in the allergy forum who are *only* IgG reactive to gluten, not celiac - who can't have strong reactions walking into a bakery with gluten (flour) in the air, or a dish with gluten that went through the same dishwasher.

Some people with celiac have huge issues with x-con, some don't, same as people with IgG reactions. For the OP, it sounds like your little one might be fairly sensitive - so whatever name you put on it, it's best for her health to minimize her exposure to gluten. Over time, you'll figure out what that means about gluten in your home. Hopefully when your DH sees a happier healthier child, that will be all the convincing he needs if your home needs to be GF.

[LeoneLover13]

I hadn't thought about getting her tested for wheat allergy to rule that out rather than the Celiac, I might ask about that at her next blood test.
It is hard to narrow down, even with my food diary, exactly what made her sick. Like this morning, she had a bad episode of diarrhea and did not sleep well at all last night. I can't find anything anywhere that may have caused it, other than after reading HRJ's post about the pan still containing gluten even after washing. I used a pot to make GF risotto last night that I used to make DH noodles for his lunch the other day. I don't know if this affected her or not, or if it was some other contamination or something else entirely different. It's very hard to figure it out and it stresses me out when I don't know why she is sick certain times.

Thank you again for all the advice, I appreciate the help :-)

[tanyalynn]

In terms of x-con, a few things that are either common problems or things I noticed affecting us: cutting boards, toasters, nonstick or cast iron pans (most seem to agree that stainless steel can be washed thoroughly), plastic kitchen items (food storage containers got us early on--safe food we'd eaten a few days before, then after a few days in the frig, I reacted ). A few people have had to wash down their kitchens fairly thoroughly--we didn't have to, but if you keep having intermittent problems that you can't otherwise track down, it's something to consider.

You may want to consider whether it's possible that the damage from the celiac has allowed other, regular food intolerances to crop up. It seems that many of the celiacs I've read posts from have had a time after they cut out gluten that they were also sensitive to dairy, and some have been sensitive to other foods as well. It's not the same damage being caused as gluten, but it can slow healing.

[raelize]

i have celiac. when i was a baby, they told my mother it was a wheat allergy. she was wheat and dairy free as long as she was nursing me. when i turned around 4 the symptoms went away. when i was in my mid-20s, they all came back. i have never had any test done except an elimination diet. i actually think that my symptoms have disappeared recently (since i thought i had been eating rice paper spring rolls only to find out later that they were wheat and i didn't react). this is very common for celiacs.
my dd started having seizures almost 2 years afo. we just realized that they were probably from celiac. the seizures she has are typical for celiacs, less common among the general population. we also did the blood test, with her still eating wheat, and she tested negative. but the tests are notoriously wrong, especially in kids. we plan on homeschooling, and i don't want to expose her to wheat so we will just accept for a test that when seh eats wheat, she has a seizure. that is good enough for me and her ped, so he diagnosed it that way. i did want some medical "proof" about it since her seizures are so serious that if there is ever any issue about her medical status it is in the books somewhere.
since she has been gluten free she has had no seizures except one that we think was from eating out and not being careful enough.

i think your daughter has celiac. i would suggest to your husband to get checked also. you can live symptom free for a long time. if you have celiac, your 1st order relatives have a 1 in 4 chance of having celiac. 1st order are kids, sibs, parents. so there is a good chance he has it too if his mother and daughter have it. often symptom free celiac causes all sorts of autoimmune disorders, so i wouldn't be surprised if others in his family have celiac on top of their autoimmune disorders.

i wouldn't test for a wheat allergy because allergy tests, especially in children, are notoriously wrong like the celiac blood test. i would just assume she has celiac and treat it that way from now on. it is really simple to live gluten free. i make my own bread, make most of my own cookies and such for the kids. the whole house is gluten free now, and there are excellent alternative foods on the market nowadays- almost every kind of cookie, bagels, excellent pizzas. i don't know where you live, but around here it seems that every year there are more restuarants that offer exclusively gluten free items made in a dedicated section of the kitchen. since she has such obvious reactions to gluten, it will be easy to know if she has been glutened.
if i really wanted the intestinal biopsy for my dd (which i don't- i don't want to risk seizures for it) i would wait till she was much older.

[LeoneLover13]

tanyalynn: I have thought about other possible allergies also, I thought she had a casein allergy as a baby and since I am lactose intolerant I have cut out dairy most of her life until recently. When she first started with diarrhea that was my first thought and I cut it out completely but she didn't get any better.
Stainless steel is ok then? Hmm, then my theory may be wrong. I cooked using a stainless steel pot, my only other thought was that since I washed it with the regular dish sponge then I could have x-con everything else I washed with that sponge? Is that even possible? We live on a boat so we use plastic most everything, our dishes are plastic (as are hers) but our tupperware is tough glass, our cookware stainless and one non-stick.

rachel_eva: I was under the impression Celiac is a lifelong disorder that never goes away since it is an auto-immune disease? How could your symptoms go away after a while and then return? I had no idea seizures were related at all to Celiac, that must be scary, I'm sorry. I'm glad she is well on the diet though!
I really wouldn't have thought DH would have ANY digestive issues at all, he has a steel stomach, but I have read a few places now that it's a 1 in 4 chance of direct relatives having the disease also. Maybe we should have him tested just in case.

[raelize]

[QUOTE=LeoneLover13;15984228
rachel_eva: I was under the impression Celiac is a lifelong disorder that never goes away since it is an auto-immune disease? How could your symptoms go away after a while and then return? I had no idea seizures were related at all to Celiac, that must be scary, I'm sorry. I'm glad she is well on the diet though!
I really wouldn't have thought DH would have ANY digestive issues at all, he has a steel stomach, but I have read a few places now that it's a 1 in 4 chance of direct relatives having the disease also. Maybe we should have him tested just in case.[/QUOTE]


the disease never goes away, it just becomes asymptomatic. if you thought, like my mother was told, that it was just allergies, (which can be outgrown) than you can be doing some serious damage to yourself and end up with lots of autoimmune issues and not realize that the underlying issue is celiac. i have a friend who was diagnosed with Juvenile diabetes around age 9, then in her early 20s developed narcolepsy. finally someone told her to test for celiac, and that is what she has. she was just asymtomatic. of course, now its too late, diabetes and narcolepsy can't be reversed. but if she had stayed on gluten, who knows what else seh would have developed?
its very common for symptoms to disappear or lessen in severity throughout your life only to return later. that is why some people don't find out that is what is worng until they are much older. they live for so long without bad symptoms, or they wax and wane, or they are asymptomatic for most of their life. i lived from around 4 years old to about 25 totally on gluten with no symptoms. but then the symptoms came back and i thought i either had stomach cancer or celiac. when i went off gluten (no health insurance, stuck in grad school) i was fine. i have never been formally diagnosed cause i couldn't afford it at teh time, and now i don't want to binge on gluten so that i can get my check mark.

[kjbrown92]

Just remember that there is also gluten intolerance which is neither celiac nor wheat allergy. It causes gastrointestinal symptoms, etc. but is not auto-immune. And it's possible, quite possible, to all the people with the negative celiac tests, that that is what you have (it's what DS, DD2, and I have). We do not have a gluten free home, however I am very careful about cross contamination, and yes, sponges can cause cross contamination. Anything that has had gluten in it (or any of our other allergens) is washed at least twice, most likely 3 times. The good news is that if it is NOT celiac, then there's a chance with some healing, that the person can overcome it. We go to an osteopath for manipulation, do bone broth, probiotics, enzymes, etc. Has the child had a stool test? Genova has a good one, in case anything else is going on.

[mellowjello]

Some people can be sensitive to gluten because it is very inflammatory to the GI tract. Inflammation creates a breeding ground for bad bacteria to grow. Bad bacteria result in diarrhea. Dairy (cow) is another really inflammatory food, as is sugar.

Some people have a symptom picture that says "allergy" clearly, but for my daugther I always felt like allergy was secondary to her gut flora imbalance. She had poor digestion, bloating, reflux, along with sleep/behavior symptoms.

Inflammation and bacteria growth causes the lining of the GI tract to secrete a protective mucus coating. This protects the GI tract from damage but also creates a barrier that keeps nutrients from being absorbed. Common nutrient deficiencies are B vitamins, minerals, and fat soluable vitamins A, D, E, K. My daughter's growth really took off from being on the GAPS diet with lots of probiotics. This helped to heal her GI tract. If irritants are removed, the gut lining can regenerate itself.

In addition it was really important to correct her serious nutrient deficiencies. I don't know if this is anything relevant to your daughter or not, but Vit E, B12, B6 and folic acid are all involved in red blood cell formation. For my daughter, she had horrible hypoglycemia from b12 and mineral deficiency. She responded really well to supplementation.

The common tests at the doctor's office are not very sensitive. For example, this article explains why common stool tests for pathenogenic gut organisms are not nearly as accurate as DNA stool testing done at private labs.
http://www.metametrix.com/learning-c...culture-method

We spent about 2 years going to all the regular doctors and putting my daughter through lots of expensive and stressful tests and procedures. It took me a long time to realize that they don't understand GI dysfunction unless they can categorize it as celiac. If your aren't celiac positive, then they think there can be nothing wrong with your GI tract. But then you start looking into Irritable Bowel Syndrome and Small Intestine Bacterial Overgrowth and you realize they do recognize all the same concepts that are recognized in by alternative or holistic health care practitioners, they just don't think those concepts could possibly apply to a baby. But they do.
http://emedicine.medscape.com/article/931041-overview

Goat milk is much, much less problematic for people. My daughter didn't show improvement to removing cow milk at first, but then it made a big difference over a few months time. It takes a really long time for cow milk to get completely out of your system and for the gut to heal from it. I can find goat milk and goat milk yogurt (even better, because of the probiotics in the yogurt) at Trader Joes.

Sometimes just removing gluten is not a good solution when the gluten foods are replaced with high glycemic carbohydrate substitutes, like rice flour bread. These products feed bad bacteria and contribute to the overall problem.
http://www.celiac.com/articles/21831...lth/Page1.html

[Koalamom]

I am here to offer support! Both my kids have to avoid wheat, but not always gluten. We had cut it out for 6 months, but I have added spelt back in occasionally with no problems if we have it in small amounts. (like once a month). Cutting out gluten was hard at first, but now it is no problem. the whole house is on board, and we are enjoying GF bake goods without missing ones with gluten.

[LeoneLover13]

Just a quick update from today. She had her final (thankfully!) blood test and her counts are coming back up so they are happy to leave her alone now and let her body continue to improve.
As far as celiac, or GI issues, the Pediatric Specialist we have been seeing doesn't know all the much about it, other than if she had it she should have had a positive blood result to it. She has referred us to a Nutritionist to help with the diet and wants us to follow up with her regular Ped in a month to monitor her weight. She hasn't gained anything since July and is still around 22.6lbs at 2 years.
I believe she isn't gaining because she still isn't absorbing enough nutrients because of her either Celiac, or intolerance to gluten and therefore not gaining any weight. She is very thin, I can see all her ribs, she has a really rounded fat belly and zero butt that she used to have.
How long would it take for her to start gaining weight again if it is Celiac? I know it can take years to regrow the villi in the intestine, but we are not going that route so how will I know that she is absorbing nutrients and gaining weight again? Will I ever know?
I worries me a lot not knowing if she is getting better or if she continuing to worsen. Especially with the idea that she may be symptomless with certain contaminations of gluten, but could still be suffering internally.
She still doesn't have continually normal BM's. It's on and off every day, anywhere from normal solid dark poops (tmi, sorry) to slimy, watery, yellow, orange or green with a lot of undigested food. So it's hard to tell whether or not she is getting better or not.
Thank you truly for all the support and replies so far, it has really helped me understand a lot more.

[raelize]

if it was my dd2(who is also 2), i would (and i am in no way telling you what to do, i am just sharing what i would do) keep her off gluten. it is really easy and there is nothing gluten has that can't be gotten elsewhere. there are so many alternative foods out there, so many great recipes and blogs that have fantastic alternatives. and otherwise, i would work with the docs adn nutritionists to try and figure out if there is something else bothering her, or if it is just gluten. i realize that the ped you are talking to says the blood test would tell if she had celiac, but it doesn't and there is no way that a nutritionist or doctor can force you to give her gluten.

in my experience, once i am off gluten, i pretty quickly start to feel better and within a week or less my symptoms are gone. BUT, i am not a little 2 y.o. who's body is still trying to grow and recover from a physically traumatic illness, so it may take her longer to totally recover.

also, i would be RABID about what she eats. when we go out to eat, i will ask a waiter if something has wheat, and i will tell them that i go into anaphylaxis if there is gluten. i don't really, but it seems to me that is the reaction they most respect so i use that to my advantage.

once you have this under control, if she isn't having symptoms, and you are 100% sure that she isn't getting gluten, than i wouldn't worry to much about whether she is getting hidden gluten. unless you know she is asymtomatic, then assume she will have symptoms. and keep her 100% gluten free.

although she may not have celiac, i personally would assume she does, and she may have some secondary issues (dairy, other allergenic foods, flora imbalance, etc) due to the celiac.

jsut my thoughts on it.