3 Year Old Gluten Intolerant - Casein, Lactose, Soy Intolerant, Too?

[Truleesmom]

My three year old little girl was diagnosed with Celiac about 3 months ago and we have pretty much been gluten-free since then. She first had the blood test -- then it was confirmed with a biopsy.

We saw a nutritionist about a month ago - she pretty much

told us things we'd already learned from books on Celiac Disease and support

websites -- like this one. (I LOVE THIS SITE!!!) But, about a month ago, she started frequently complaining of stomach pains again. We pretty much threw out our entire kitchen -- food, cookware, utensils,

toasters, etc. But she still complained of stomachaches. Then I came across something

on this site -- it stated that once you go gluten-free, you should also go dairy-free; due to the villi being damaged and not being able to produce lactase. (I found it rather frustrating that neither her GI doc, the nutritionist,

nor her pediatrician brought this up. We immediately switched her to soy products. And almost immediately she stopped complaining of stomach pain, BUT her stools were even more loose and more smelly on the soy than they were when she was on dairy. (I should mention here that she is not potty-trained yet and before she went gluten-free her stools had become more firm and seemed normal. She had loose stools for awhile before that because she had a Choledochal cyst removed. We were told by her surgeon that we should expect her to have loose stools for a few years. She was 5 months old when she had that procedure.) Back on the subject at hand -- I was worried about a soy intolerance or allergy, so I bought Lactaid brand milk and some lactose-free cheese. She ate and drank both yesterday and today. This afternoon she once again complained of stomach pain and had terrible diarrhea. So now I'm wondering if she is also casein intolerant!

Also, my husband, myself, our 8 year-old daughter have all been tested for Celiac -- but all of our tests have come back normal. Her paternal grandmother and her maternal grandfather both tested normal too. Seems so weird since everything that I've read so far, celiac disease seems to be a genetic inherited disease. I'm wondering if there is anyone else out there who has had a Choledochal cyst and is now gluten-intolerant?? Is there any way that her gluten-intolerance (and now other issues) could have come from her Choledochal Cyst (rare condition -- like 1 in 150,000, sorry! you'd have to google it to find out more) -- or the fact that she had a bowel resection and gallbladder removed, (part of the procedure for removing the cyst)?? We discussed this with surgeon who performed the cyst removal when we first discovered that she may have celiac disease -- he said, (and the GI doc too) that they were not at all related.

I feel like I am running out of options of food to feed our baby!!! Luckily she's a good eater -- LOVES fruit and veggies. But also practically lived on string cheese and gogurt! She took pretty well to the switch to soy, (except for the cheese! ) But now I guess I'll have to see if she likes Rice Dream?!?

[Ursa Major]

Leslie, it is not at all unusual for people with celiac disease to also be intolerant to casein and soy. When you switch to a different kind of milk, don't use Rice Dream, as it is NOT gluten-free. It is processed with barley malt and contains a small amount of gluten. Unfortunately, with the new labeling laws, they can claim it is gluten-free because the gluten content is below the limit of 20 ppm. Some people with celiac disease will get sick from that. There are other rice milks out there that are truly gluten-free, and almond milk is nice, too.

My oldest daughter gives her 19 month old almond milk, because it is more nutritious than rice milk, with a higher fat content, too.

Your doctors are wrong when they are saying the surgery couldn't have caused celiac disease. Any very stressful event like surgery, pregnancy, accident, divorce etc. can trigger celiac disease if you have the genes for it. So, the surgery could very well have triggered it.

I did some research on her condition, and I can see why they had to remove her gallbladder.

I am sure you will find new favourite foods soon. Good thing she is not a picky eater. And if her tummy feels better, I am sure she will be happy to give up whatever made it hurt again.

[gfpaperdoll]

Hello, I read up on the cyst. IMO it is common for someone with celiac to get a rare condition. I know of several people that have rare "supposedly unrelated" conditions that have been helped with their gluten free diet. I think that your daughter will become extremely healthy on a gluten free, dairy free, soy free diet. If you will check dairy & soy are high in glutamates as are the gluten grains. Several people I know (& me) think that for some of us that it is the glutamates that we cannot handle. hence our problem also with dairy & soy & we can never add it back to our diet.

here is a link scroll down to look at the pictures of foods & how much glutamates they contain - I have not had time to read all of these pages on this link - but it is VERY interesting. This chart is at the bottom of "what foods to avoid"

Open Original Shared Link

also interesting about how companies are adding MSG under natural flavors... This is what happened to me recently. I was hungry for some sweet pickles, but I am also corn syrup free (just because I think corn syrup is unhealthy) so I went to whole foods & paid the money for a jar of orgainc 365 Brand sweet pickles they had natural flavor on the jar - now I react very badly to MSG & would not buy anything with MSG but yep, three small pickles chips & I had a reaction - not good at all. I have not called the company yet to find out what the "natural flavor" is but I think I really already know, I always get the same reaction from MSG or any artificial sugar. I am also severely allergic to aspartame. & I am "allergic" to peas, cod fish, yeast, barley & beef among a few other things...

I encourage you to check out glutamates & lectins. Also, check into spinach, I forget what it is high in but I use Kale instead - much better for some of us...

If I were you I would also get a gene test thru Enterolab, if not a complete panel of tests - to see what you are dealing with for yourself, someone else more than likely has celiac, but just do not know it yet. Negative blood tests mean almost nothing. Some moms find they have a problem when they start eating gluten-free with their child.

[fedora]

Blood tests can have false negatives. Also some people have internal damage but no symptoms. If you do have symptoms you may want to consider trying the diet or getting enterolab testing done.

Good luck with your daughter.

[Truleesmom]

Thanks so much for all of your replies! I've got more homework to do now! I'll see if she likes the almond milk. Anyone have any recommendations as to which rice milks are truly gluten-free and tasty too?? I guess cheese is completely out of the question now? Don't think I've ever heard of almond cheese or rice cheese! As far as anyone else in our family having symptoms of Celiac -- we don't. Never had a problem with any types of foods before -- so still wondering if it is possible to develop Celiac due to a mutant gene? That is the answer that I'm given by the docs when I tell them no one in our family has a history of celiac disease.

[AndrewNYC]

Lundberg rice milk and pacific rice milk are both safe. Whole Foods usually carries one of these.

[AndrewNYC]

Yeah I think cheese is out of the question. I'm gluten free/dairy free/soy free as well and I have not found such a thing in 5 years. Whole Foods carries one brand of rice based "cheese" singles that come in many different flavors including American, pepperjack etc. However I am pretty sure it contains trace amounts of either soy or lactose. And I think casein is a main ingredient.

[irish daveyboy]

Thanks so much for all of your replies! I've got more homework to do now! I'll see if she likes the almond milk. Anyone have any recommendations as to which rice milks are truly gluten-free and tasty too?? I guess cheese is completely out of the question now? Don't think I've ever heard of almond cheese or rice cheese! As far as anyone else in our family having symptoms of Celiac -- we don't. Never had a problem with any types of foods before -- so still wondering if it is possible to develop Celiac due to a mutant gene? That is the answer that I'm given by the docs when I tell them no one in our family has a history of celiac disease.

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Hi Truleesmom,

You could try 'Darifree' it's a dairy substitute derived from potato.

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Open Original Shared Link

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If you are 'Lactose' intolerant, as a general rule the

HIGHER a fat content the LOWER the Lactose.

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2% milk would have more lactose than Full Milk.

Butter, cheese etc would be higher in fat and have less lactose than Milk.

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So using a LOW Fat or NO Fat milk or milk product (while it is generally healthier)

It is HIGHER in Lactose (up to 52% in some cases of Skim milk powder)

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Reference: Open Original Shared Link

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While people may not tolerate cheese produced with cows milk,

in some instances Goat's, or Sheep's cheese were found to be tolerable.

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You might like to have a look at Dairyfree Cheeses.

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Open Original Shared Link

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Best Regards,

David

[Truleesmom]

Great! Thanks again for all of the terrific info! Does anyone know a simple way to tell if it is a casein intolerance - or just lactose? I've read to take a Lactaid pill, then drink a glass of milk. If you react, then it's probably an intolerance to the casein. Does that sound right?? I'm wondering if she is too young to take Lactaid pills...

[AndrewNYC]

There are a handful of lactose free food items out there that contain casein. You could go lactose/dairy/casein free for several days, then introduce the casein and see what happens

[gfpaperdoll]

I would not add in any dairy. If you read up on it dairy is really not good for anyone but especially for people with gluten intolerance. Also, believe me if most of us could tolerate goat & sheep cheese we would be shouting it from the rooftops - & we have eaten cheese from every corner of the world - well most every corner... & I still cannot handle dairy.

It seems from my informal survey that if you have any of the gluten intoelrance genes then you can pretty much kiss dairy goodbye. I think that if you are say DQ2 & DQ8 your chances of tolerating dairy go up.

I would not go around messing with the kids insides trying lactose free, casein free stuff - just omit dairy for at least 6 months to a year & then you will be better able to see the results of a trial & make up your own mind what you want to do in terms of reintroducing.

Life & Food really is good with out cheese. & No soy - ever, no one needs soy - it was just the new marketing ploy for awhile, now soon to be replaced with some other food that someone wants to see to someone... I mean with the media today I bet they could convince poeple that sawdust has nutritional value!

[gebfam 1]

Hi Trulees Mom,

I went gluten-free 2 months ago. Also eliminated casein and soy but still seemed to have problems. My doctor suggested eliminating eggs also, which I did. I improved within a few days. Perhaps I had reached a turning point and was going to get better anyway, but I think not. My doctor explained that the casein molecule is closest in shape to the gluten, then eggs and after that soy. Hope your daughter is better soon.

[Truleesmom]

It seems from my informal survey that if you have any of the gluten intoelrance genes then you can pretty much kiss dairy goodbye. I think that if you are say DQ2 & DQ8 your chances of tolerating dairy go up.

I'm don't know what DQ2 or DQ8 is?? Thanks!

[gebfam 1]

DQ2.5 (DQ2) and DQ8 are the main genes that predispose a person to gluten sensativity and celiac disease. There are other genes that predispose to gluten sensitivity. If you have DQ2.5 or DQ 8 you have a very high chance of developing celiac disease. There are different combinations of genes for example a person could have a double DQ2.5 which would make them very likely to develop celiac sometime in their life. Another person might have only one copy of DQ2.5 along with another gene that predisposes them to sensitivity but not as much.

gfpaperdoll may have had a typo. My understanding is that if you have a DQ2 or a DQ 8 gene your chances of not being able to tolerate dairy increases. I have a DQ8 gene and when I was tested by Entrolab I was determined to be casein sensitive and had to give up dairy.

[Truleesmom]

Okay -- here's another question. When she was first tested for Celiac her numbers were this: normal IGA of 61 and tissue transglutaminase antibody IgA more than 100. (This was confirmed with the biopsy.) She had many other tests run at the same time, (blood, urine, and fecal) and one the results were "negative food RAST testing for milk, soy, egg, beet and peanut". I don't understand what this test means. I haven't gotten a sufficient answer from her pediatric GI doc. I keep asking him if that "RAST" test is an allergy test and if so -- is that the same as an intolerance test. ??? Any help on this would be GREATLY appreciated. We've already been to two different pediatric GI docs -- one was voted one of the top 50 in the Washingtonian magazine -- but haven't been overly thrilled with either. Nobody has any definitive answers.