We're new to the gluten free/Celiac disease family. No one in our family (immediate or extended) is diagnosed with Celiac, however many have symptoms of celiac disease. We have a 23 month old who doesn't talk yet, but has lots of sensitivities. He has chronic diarrhea, a bloated belly (but otherwise very skinny), is always irritable, and has had problems since he was 6 months old (he was strictly breastfed till 1 year of age). We suspected milk and soy first and have kept him mostly off those for over a year, but in fall '07 we started thinking wheat may be a problem as well.
I made gluten free bread today, with cinnamon, eggs, milk, and gluten-free flour, among other things, and as soon as he had one bite he had a coughing fit that lasted 5 minutes (he does have a cold, but he hadn't coughed since breakfast).
I was really careful for a couple of days about not giving him gluten and he had his first non runny stools in months, and was our regular happy boy . We had a negative test result on the blood test, and some are saying to definitely do the endoscopy, and others say it won't show up till he's older, but if you know that the wheat is bothering him, to go gluten free.
Has anyone heard of Enterolab? And what do you think about it? I'm tired of getting inconclusive answers from different tests and just want one that says "yes or no" - not "his tests came out negative for the disease, but he may have a sensitivity"
Sorry this is so long, we have tons of questions and don't know where to turn.

A lot of people have had success with Enterolab when regular methods of testing have come back inconclusive. However, the tests from Enterolab aren't generally recognized as being conclusive by the medical community. So it's a bit of a catch-22. I don't know if the results from Enterolab will help you decide to remain on the diet or not. Only you can answer that question.

In all honesty, the best method of "testing" is via dietary response. I realize that this method may leave a lot of people without a medically documented diagnosis...but in reality, the most important thing to look at is the individual's response. If your child improves on the gluten-free diet, you really have your answer. It really doesn't matter if it is true Celiac Disease or non-Celiac gluten enteropathy. The treatment remains the same. A gluten-free diet.

My dd also tested "negative" for celiac disease via standard tests. However, she had marked improvement on the diet. I think it took me a full year to firmly wrap my head around the fact that it doesn't matter whether she has celiac disease or not. She cannot have gluten....EVER. At some point, I guess that you just have to trust your own two eyes and your observations. It can be a bit scary and overwhelming at first, but ultimately, the goal is to help your child live a happy and healthy life. No crystal ball is required.

Many who are gluten insensitive can also be intolerant of other forms of carbohydrate including sugar, soy, corn, plus other things like dairy, eggs and yeast for instance.

You may find that a better way would be to put your baby onto a plain basic diet for a week or so to clear out any lingering delayed responses then start to introduce other foods one at a time every 2 or 3 days. It is difficult, I know but worth it in the long run if you and he can bear with it.

Carbs like rice, potato, buckwheat, millet and quinoa are usually tolerated. Meat, fish, and fowl are generally tolerated although some extra sensitive souls react to meat from animals that have been fed with wheat. Vegetables and fruit are usually tolerated fairly well but if you are in doubt about anything leave it out until a later stage.

Apparently around 80% of the population is intolerant of carbohydrates, particularly gluten/wheat and sugar. There is a school of thought that states that whilst sugar is not 'allergenic' in itself it often exacerbates the adverse effects of other foods. I am sure that is true as I have always found that my symptoms after having sugar and dairy together, for instance, was always worse (I would always end up with a severe coughing fit). I also believe though, that sugar is a definite antagonist - many people (me included) find that it makes them very tired and sluggish and gives them 'brain fog' so it must be having an adverse effect on the body.

Unfortunately we have become so programmed into giving our children sweets and stodge because we love them and want them to have nice things. Sadly it is those things that are doing the damage - we are killing them with kindness. The body adapts to a certain extent to all the 'rubbish' but eventually it will collapse or the effects will manifest in some insidious illness or disease.

A friend was relating a story this morning about someone she knows who had never given her little girl anything but good wholesome food. She had never had sweets, just fruit. when she was 9 she went to a party and was given some 'rubbish' highly sweetened foods. She ended up in the hospital, because her body was so unused to the chemicals and sugar which had acted like a poison, it had thrown a wobbly and she collapsed. Needless to say, she never wanted that food again!

It seems like your dear baby reacted to something in the cake, possibly the milk, perhaps there is soy in the gluten-free flour mix, even to the sugar or carbs in general. If he has been having a lot of sweet things over the last 2 years he might even be suffering from an overwhelming bacterial overgrowth in his little body - the only thing that would control that is to radically cut his sugar consumption.

I have always been intolerant of carbohydrates, the damage to my body has eventually manifest as diabetes. About 6 weeks ago my body/digestion finally collapsed and although I subsequently went gluten-free, my intolerance is now so great that any carbohydrates in the form of even gluten-free baked goods or cereals seems to adversely affect me. I am ok as long as I limit the carbs to vegetables and fruit and keep well away from sugar! I had 3 or 4 home-made gluten-free cookies yesterday and ended up awake most of the night with my digestion.

I am having to resign myself to the fact that I need to put carbohydrates in the place they really should be - as a very occasional treat, rather than an everyday occurrence.

Some people have systems that cope with the carbs fairly well, but it is still slowly and insidiously damaging the body. The damage to your baby has fortunately come out at a much younger age so it should be much easier to turn his diet around and make him well.

I wish you success for you both.

A child as sensitive as yours will need an elimination diet for sure. I do like Enterolab but the best test is dietary response.

Your child should probably not have any grains for a bit. I would at first suspect the common allergens, wheat (& oats, barley, & rye & that includes barley malt) eggs, dairy, soy, white potatoes, & nuts.

I would introduce a diet of baked or boiled chicken, baked sweet potatoes, cooked carrots, cooked cabbage, cooked broccoli, and baked wild salmon. For fruits I would start with bananas, pears, and apples. maybe introduce ham/pork if your child is not having trouble with any of the above. I would offer a lot of meat & include the fat with any meat that you serve and add a little olive oil to veggies...

for drinks I would only offer water & maybe 100% grape juice diluted.

Then when your child is eating good & does not have an extended belly you can begin to introduce some other foods, like white rice, beef, other fruits, I would offer citrus fruits last & I would add coconut milk in smoothies etc if your child can handle coconut...

Good Luck & Gluten Free is the way to start out - except skip the gluten free flours for a bit... Just go with simple whole foods. I would also get the childs mineral & vitamin levels checked and add supplements - the child is not absorbing his food which is why the extended belly & skinny arms & legs & probably a flat butt.

We did the enterolab testing - see my siggie for results. We also have had good results on the gluten-free diet. The most marked improvements have been with my 28month old. I needed the concrete information provided by enterolab in order to wrap my brain around this and take us all gluten-free. I'm glad I got the testing and I'm glad we are gluten-free.

Just wondering if you might want to do regular allergy testing, too, for food allergy? I thought I might have celiac, but I showed up allergic to wheat, milk, barley and malt .. . it was just regular allergy, kinda strange. I also did the A.L.C.A.T test, which is a blood test which tests for food sensitivities, but uses a different method than the enterolabs tests.

The reason I'm really in to testing, is that your son might not be allergic to what 'most' people are allergic too. I tested as allergic to all meats, even chicken. I tested allergic to carrots! However, I am NOT allergic to corn, which my sister is allergic to, or to soy which is another common one.

I am now on a very long process of eating safe foods and introducing new foods, but I think it would have been much harder for me if I hadnt started w some tests.

BTW, eggs is another common allergy which could have tripped up your son in the bread, or milk. Its really hard to tell when you are eating foods with lots of ingredients.

Good luck getting your little guy healthy

We had him tested twice for food allergies, but both times he came out negative - no allergies at all. But they said that he could still have some sensitivities to some foods, though they couldn't tell what they might be.

HI!

My baby is 21 months and we have been dealing with this since she was 12 months old. We have done all the testing and biopsy and still have a negative for Celiac.

Blood test in young toddlers come back negative a lot because they don’t have enough of the antibodies in their blood to register positive. The biopsy comes back negative because they are so young, there usually aren’t many bad spots that a gi can biopsy. We had 3 drs totally convinced that she would show a positive and declared she was a classic Celiac case - TEXT BOOK case. The kind of case they are taught in med school. Everything came back negative. And we still have a sick sick baby. But not sick enough to be in the hospital. But sick enough to be monitored monthly with weight and height checks.

Right now there are research studies that are trying to identify earlier markers for Celiac than marsh 3 and marsh 4 damage to the villi. Until those studies are completed, published, scrutinized, and finally accepted, and become wide stream, babies like ours will continue to have negative test and continue to be sick. IF your blood work has come back negative all ready, you will probably never get a definite dx of yes it’s Celiac. The best you may hope for from a dr is a dx of Non Celiac Gluten Intolerant. Entrolab is great but not recognized by most medical drs.

Our ped is way more enlightened than our gi and recognizes that she could be completely negative and still have Celiac just not completely damaged villi, which is the current criteria for dx. Her belief and the gi even thinks this is that if she continues to eat wheat/gluten will she develop Celiac. The gi isn’t concerned with her being sick but the ped is. She has greatly encouraged us to remove all gluten and follow a strict gluten-free/CF diet for the next 6 months and then try dairy at that point and see if she can tolerate it then.

We’ve been on the diet 6 weeks. In those 6 weeks, she had gone from non-verbal to speaking words and repeating words. She is friendly, laughing, smiling, happy, sweet, content, HUNGRY, tells jokes, plays with other children, doesn’t bite, doesn’t throw fits every 2 minutes, almost sleeping thru the night, did I mention HUNGRY, She’s gained 1.5 all ready and grown one inch. Her butt has suddenly appeared and her belly is flat some days. Her arms are no longer frail and breakable feeling and she’s beginning to have some substance to her.

As for the foods, the best way we discovered is to do a very simple diet of fruit/veggies/ rice just like you did when first introducing new foods as a baby. Like a pp mentioned. Just start the whole process over again leaving out gluten and dairy (if the villi are damaged then the body’s ability to handle dairy is also) Do this for about month. Then add in one food at a time not for 3 or 4 days but for 3 or 4 weeks. This is what our allergist has us doing because allergies will show up in 3or 4 days if not immediately but intolerances make take much longer. And by having Celiac, there may be many things that you can’t eat now that after you heal, you will be able to. Once the gut is irritated and upset, it loses its ability to handle many things.

We discovered that cashews, almonds, and pistachios upset her tummy in various ways but she is not allergic to them. It may only be that we are still in the early stages of healing and the gut just can’t take digesting those now. Flaxseed meal tears her up as well. At least by removing gluten and dairy, we are able to see what specific food to avoid for the next 6 months or so. Keep a detailed journal listing foods and poops so you can see the pattern and not have to rely on your memory. Plus, it helps to show the dr.

My only advice is just do the diet. It’s just in the very beginning, it’s best to keep it really really simple as even the gluten-free flours and grains can be hard on their healing gut. The whys aren’t important in the face of a very sick baby. We discovered this week that we have added in too many grain meals and need to cut back. I have made pancakes and rolls this week and her stomach is a little loose. NOTHING compared to gluten days but enough that we know she isn’t healed enough to handle pancakes for breakfast and a roll sandwich for lunch. Even our allergist agrees that if she really has Celiac, it will take months of careful dieting before the gut has healed and can digest food properly. Simple and the fewer ingredients in a dish is the best for a long while. But by the changes we have seen, we are definitely on the right path.

HTH
Stacie

Your son sounds very much as my older son did when he was around 2. Very tall & thin (off the charts for height, about 30th percentile for weight). Had the "protuberent belly" (as his allergist called it), tested negative for celiac disease via blood/stool....and I was told he didn't "look" like he had celiac. His GI doctor tried telling me him having diarrhea 8-10 times a day was "normal" for some kids and that he had "toddler's diarrhea" and she wanted to get a biopsy. At that point my son had been poked & prodded by several doctors and had become quite fearful, so I was hesitant to do the biopsy. The GI doctor told me the results would depend on there being enough damage done, and them biopsying the right spot. I asked her about trying the gluten-free diet and about Enterolab - neither of which got positive remarks from her.

Anyway, at that point I felt I needed proof in black & white - both for myself and for school/daycare, so I went ahead and got the testing done through Enterolab. I'm so glad I did - I found out my son carries TWO genes for gluten intolerance, and no genes for celiac disease. My husband and I had no idea we reacted to glutens, but because of that test, we all went gluten-free. Although my pediatrician was a little leery of Enterolab testing, he's supportive of us. There's no denying the complete turnaround my son did - no more poochy belly, no more diarrhea, no more eczema....and the symptoms that my husband and I had but didn't know it are gone too.

I think if you feel like you NEED to have the proof on paper, then do the testing, but doing the diet will tell you all you need to know. Good luck!

Thank you to everyone for your great insight, experience, and ideas. I have a very stubborn son, and he will just go hungry, hoping and waiting for us to give in and give him what he wants. I know it sounds boring, and gross, but he only wants regular white bread that has no soy or milk with Natural Peanut Butter on it, with or without jelly, jam or honey.

Tonight was his 3rd night in a row to go to bed hungry cuz he refuses to eat what is placed before him. (what we are eating) I am not sure what to do. The pediatrician suggested not making it a big deal if he chooses not to eat, cuz then the problem will escalate. But she also doesn't live with this child who cries all night cuz he's hungry. If he leads me to the kitchen, I offer dinner, again, and he refuses again.

He did have about one ounce of the blender drink I made tonight that went with our dinner. (frozen fruit I have either frozen or canned myself mixed with a little rice milk.) I know I shouldn't stress, but I feel like he is starving himself. I have done the "add a little bit at a time" diet so many times I think I'll go bananas! (he is not my only child, he is the 3rd of 4 children, and not the only one with food issues--and everyones' issues are different!!!) Back in January when he was on the BRAT diet, minus the bread, he ate bananas and applesauce and rice almost daily as I tried and tried to offer all sorts of veggies, fruits, meats, PLAIN FOODS but with no giving in on his part!!! He now will not even touch rice, bananas OR applesauce with a ten foot pole!!!

We all usually eat pretty healthy at our house (or so I thought until I realized gluten might be the problem) I'm pretty good about keeping the sweets and sugars to a minimum, and my friends can't believe how much I "deprive" my children of the good stuff. People even joke that I was born 50 years too late, cuz we do a huge garden every year, I love canning, homemade bread was a norm at our house, and we eat home cooked dinner, usually from scratch, every night as a family, so it's not like he is chowing down on fruit snacks, kool aid and goldfish crackers all day so he won't eat the good stuff! I hold out, hoping he'll give in, and he doesn't! I need some ideas! Is he going to starve himself?