My Sons Blood Panel Was Postive -- What's Next?

[bugsmom]

My son is 21 months old and just had a blood test for celiac. Our pediatrician said that the results came back positive and we need to talk to our GI about the next step. I am wondering if a biopsy is really necessary at this point -- are the blood tests often false-positive? and could we got through enterolab rather than do the biopsy?

We have been having a really hard time with Jack since he was about 4 months old. He was diagnosed with acid reflux and was on the drugs until about three months ago. He has refused almost all solid foods from the beginning. He will occasionally eat some fruits and veggies, but very rarely. He will only drink water. He hasn't gained any weight since he was 10 months old (he is 23 lbs) but is getting taller. We have been fighting constipation for about 6 month which seems strange to us since he is still mostly breastfeeding. He had always been very gassy. His teeth seem discolored -- kind of grey. All of these things seem to fit pretty nicely with celiac -- it would sure explain a lot. Sound familiar to anyone? I want to go gluten free right now -- do I have to wait until they do the biopsy? can I go gluten free until a day or two before the surgery and then go back on just for a day?

Also -- do I need to go gluten free as well, since we are still so heavily breastfeeding?

and is Pediasure gluten free? I am trying to read up all I can on the "hidden" gluten in products. Pediasure is about he only thing I can get in him and I want to make sure it is ok.

thanks so much for any help!

Erika

[Ursa Major]

Hi Erika, and welcome to this board. No, there are no false positive blood tests for celiac disease, only false negatives. Biopsies at that age are very often false negatives, and unnecessary as far as I am concerned. For toddlers the diet is the best test. If he responds well and is much better, you'd have your answer. After a positive blood test I wouldn't keep a child on gluten and wait for a biopsy! But if you want more proof, Enterolab is the way to go, especially since you don't have to be eating gluten to be able to do the test.

To your question about breastfeeding: Yes, gluten will be in your milk if you eat gluten containing products. So, if you continue to breastfeed Jack, you yourself have to go gluten-free. And since celiac disease is genetic, your son obviously inherited it from somebody, either you or your husband (or both). If it is you, you may be very surprised when you go gluten-free at how much better you will suddenly feel. Because gluten doesn't just cause intestinal upset, it causes many other symptoms as well.

[AndreaB]

You'll find me repeated a lot of what Ursula said.

There are no false positives for blood work. Whether you go through the biopsy depends on what you want to try and find out. I've heard many people post about wanting it done and just as many post that they weren't going to do it. It's a personal decision. If you decide to do the biopsy, Jack must remain on gluten. He can't go off of it and then back on just before the biopsy, it could skew the results and as Ursula said there are many false negative biopsies. After the biopsy he could then go gluten free. Enterolab is who my family went through because of my allergy results. My infant son broke out with eczema, which is why I had testing done. When I went totally gluten and soy free he cleared totally up. My husband and I are both soy intolerant. My daughter, oldest son and I are gluten intolerant. My oldest son has mild malabsorption which we would have never known otherwise. We all have two genes that either predispose to celiac or predispose to gluten intolerance.

Also as Ursula said, you would need to go gluten free in you plan on continuing to nurse him. Enterolab is expensive but worth it IMO. You could just have him tested with the complete panel which also includes the gene test and see what he comes back with. Or, you could get yourself and/or other family members tested. TCA is another poster on here, she is one of the ones that would know about pediasure.

Did you doctor or dentist say anything about Jack's teeth?

Welcome to the board. I know this is all a lot to learn but you've come to the right place.

[bugsmom]

Thanks so much. This is all a bit overwhelming right now. As far as I know, no one in our family suffers from anything like this. I don't have any allergies and eat everything. I'm a pretty healthy girl and don't even so much as get heartburn. One of the most frustrating parts right now for me is that we eat a lot of whole grains and whole wheat pasta and we have been trying to get Jack to do the same - also at the advice of our dietician. And now to learn that everything he has been eating has been causing the problems is devistating. This isn't something that we would have ever considered. I understand that some people can have the disease and not show the extreme symptoms -- I guess we will see what happens when the family changes diets.

It does make me feel better to see that there is so much out there for him.

Does anyone know if the biopsy will do anthing other than confirm the results? I mean, will it tell us if he has any other sensitivites?

And again -- anyone know abut pediasure?

thank you

Erika

[gfp]

Thanks so much. This is all a bit overwhelming right now. As far as I know, no one in our family suffers from anything like this. I don't have any allergies and eat everything. I'm a pretty healthy girl and don't even so much as get heartburn. One of the most frustrating parts right now for me is that we eat a lot of whole grains and whole wheat pasta and we have been trying to get Jack to do the same - also at the advice of our dietician. And now to learn that everything he has been eating has been causing the problems is devistating. This isn't something that we would have ever considered. I understand that some people can have the disease and not show the extreme symptoms -- I guess we will see what happens when the family changes diets.

It does make me feel better to see that there is so much out there for him.

Does anyone know if the biopsy will do anthing other than confirm the results? I mean, will it tell us if he has any other sensitivites?

And again -- anyone know abut pediasure?

thank you

Erika

False positives on blood are only really false positives if you define celaic disease as being biopsy positive.

For a full celiac suite the accuracy is 98% on positives but the other 2% are what?

The majority of the 2% will eventually develop celiac disease... in terms of biopsy proven but what does that mean?

It is proven that gluten causes other no villi and sometimes irreverisble damage to celaics so why wait until the damage is done to act.

The biopsy can show a negative for bowel cancer ... not something you should be even worrying about but it won't show you anything new that the blood tests haven't.

[AndreaB]

Erika,

I just looked at Pediasure's ingredients online. I don't know which one you get but one of the possible problems could be hidden gluten in the artiricial flavorings or monodiglycerides. Other's may know more about this particular brand. One thing you would probably want to do is call the manufacturer. I you can swing the money I would highly recommend the whole gluten panel as well as the soy/egg/yeast panel from enterolab. You'd be looking at over $500, I think it was $568 for all of them but I'm not sure. I think the gluten panel which also looks at ttg and malabsorption levels as well as doing the gene test is $369 and hopefully still includes the dairy panel ($99 separately). The soy/egg/yeast panel is another $199. I noticed both soy and dairy in his forumula also. He may be fine with those...depends on the damage to the villi. I have also read that soy can cause as much damage as gluten so if you want to keep it in the diet (assuming he's not intolerant) than please keep it minimal. The biopsy can not tell you whether he has other food intolerances. It will only tell you about damage to the villi if they hit a spot that has been damaged. Enterolab will tell you if there has been any damage based on malabsorption score. For everything but the malabsorption, anything 10 and over is an intolerance. Malabsorption scores 300 and over are problems. www.enterolab.com for more information about enterolab. We were very pleased with them and thankful that all of us were caught before this progressed. As I mentioned my oldest son has mild malabsorption which we would have never known.

If you go to the home page of celiac.com and scroll down the page they have safe and forbidden food lists. The problem comes from the obscure ingredients which I've copied below.

The following items may or may not contain gluten depending on where and how they are made, and it is sometimes necessary to check with the manufacturer to find out:

Artificial Color4

Artificial Flavoring6

Caramel Color1, 3

Coloring4

Dextrins1,7

Flavoring6

Food Starch1, 4

Glucose Syrup4

Gravy Cubes4

Ground Spices4

Maltodextrin1, 8

Maltose4

Miso4

Modified Food Starch1, 4 Modified Starch1, 4

Mono and Diglycerides1

Monosodium Glutimate (MSG)1, 4

Mustard Powder 4

Natural Flavoring6

Shoyu (soy sauce)4

Smoke Flavoring4

Soba Noodles4

Soy Sauce4

Starch1, 4

Stock Cubes4

Vitamins4

Wheat Starch5

1) If this ingredient is made in North America it is likely to be gluten-free.

3) The problem with caramel color is it may or may not contain gluten depending on how it is manufactured. In the USA caramel color must conform with the FDA standard of identity from 21CFR CH.1. This statute says: "the color additive caramel is the dark-brown liquid or solid material resulting from the carefully controlled heat treatment of the following food-grade carbohydrates: Dextrose (corn sugar), invert sugar, lactose (milk sugar), malt syrup (usually from barley malt), molasses (from cane), starch hydrolysates and fractions thereof (can include wheat), sucrose (cane or beet)." Also, acids, alkalis and salts are listed as additives which may be employed to assist the caramelization process.

4) Can utilize a gluten-containing grain or by-product in the manufacturing process, or as an ingredient.

5) Most celiac organizations in the USA and Canada do not believe that wheat starch is safe for celiacs. In Europe, however, Codex Alimentarius Quality wheat starch is considered acceptable in the celiac diet by most doctors and celiac organizations. This is a higher quality of wheat starch than is generally available in the USA or Canada.

6) According to 21 C.F.R. S 101,22(a)(3): "[t]he terns 'natural flavor' or 'natural flavoring' means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentation products thereof. Whose significant function in food is flavoring rather than nutritional."

7) Dextrin is an incompletely hydrolyzed starch. It is prepared by dry heating corn, waxy maize, waxy milo, potato, arrowroot, WHEAT, rice, tapioca, or sago starches, or by dry heating the starches after: (1) Treatment with safe and suitable alkalis, acids, or pH control agents and (2) drying the acid or alkali treated starch. (1) Therefore, unless you know the source, you must avoid dextrin.

May 1997 Sprue-Nik News.

(1) Federal Register (4-1-96 Edition) 21CFR Ch.1, Section 184.12277.

(2) Federal Register (4-1-96) 21 CFR. Ch.1, Section 184.1444

8) Maltodextrin is prepared as a white powder or concentrated solution by partial hydrolysis of corn starch or potato starch with safe and suitable acids and enzymes. (1) Maltodextrin, when listed on food sold in the USA, must be (per FDA regulation) made from corn or potato. This rule does NOT apply to vitamin or mineral supplements and medications. (2) Donald Kasarda Ph.D., a research chemist specializing on grain proteins, of the United States Department of Agriculture, found that all maltodextrins in the USA are made from corn starch, using enzymes that are NOT derived from wheat, rye, barley, or oats. On that basis he believes that celiacs need not be too concerned about maltodextrins, though he cautions that there is no guarantee that a manufacturer won't change their process to use wheat starch or a gluten-based enzyme in the future. (3) - May 1997 Sprue-Nik News

1. Federal Register (4-1-96) 21 CFR. Ch.1, Section 184.1444

2."Additives Alert", an information sheet from the Greater Philadelphia Celiac Support Group, updated early in 1997. This specific information comes from Nancy Patin Falini, the dietitian advisor for the group and a speaker at a national celiac conferences in the past few years.

3. From the CELLIAC Listserv archives, on the Internet, Donald D. Kasarda, posted November 6, 1996.

The board is usually quiet on the weekends, so hang in there if you don't get answers right away.

[CarlaB]

Unless you want the absorption test, gene test, casein test, and soy test, I don't see any reason to do Enterolab. I was tested by Enterolab because my bloodwork came out negative. If he had the antibodies in his blood, they'll show up in his intestines, too.

The biopsy, if it shows damage, will only be a tool to show you how much damage there is. He's got to go gluten-free anyway, I personally wouldn't put him through the biopsy, but it's entirely up to you, some people are more comfortable having the additional proof, assuming it shows damage. I'd rather get him gluten-free sooner!

[Nikki2003]

I called the pediasure company and they said that it is safe for kids with Celiac Disease. But not carnation instant breakfast.