Gluten Vs. Wheat Intolerance Vs. Celiac

[nitu-752002]

Hi

I am new to this forum and i am wondering how would you know the difference between celiac vs. gluten intolerance or wheat intolerance. Is there any way to find out without an endoscopy. My DD is 27mths old and i wonder if she has one of these issues. We are of indian decent and this is very rare for us. The reason i wonder about this is because she has constipated stools very oftern followed by runny stools that have mucous in them, is this common for these intolerance or am i off the charts? I have meanwhile decided to take her off of milk, soy, and gluten to see if her stools improve. My DD has milk allergy and i think she may have soy intolerance so she is off those as well.

I appreciate any feedback as i am just starting down this road.

Thanks

[Amyleigh0007]

My son was tested for both Celiac and wheat allergy via bloodtests. The allergy blodtest is called RAST. He had the small bowel biopsy only after his Celiac bloodtest came back positive. Gluten intolerance is what you might have if your Celiac tests come back negative but you have a positive response to a gluten free diet. Don't take your daughter off gluten if you plan on having her tested for Celiac. She must be eating gluten in order for the tests to be accurate. Good luck!

[Fiddle-Faddle]

Celiac disease is defined by gluten-induced villi destruction (the villi are what line the small intestine, and they both absorb nutrients and produce lactase, I believe).

The problem is, by that definition, celiac is basically end-stage gluten-intolerance. If you have celiac disease, your body is on a progression that results in villi damage (and lots of other kinds of damage to other parts of your body) because gluten triggers your immune system to attack YOU. But there is certainly a period of time where your body is reacting to gluten--but your villi are not yet destroyed enough to warrant an official celiac diagnosis.

At this point, doctors usually tell you that you don't have celiac.

So you either go back to eating gluten until you have enough damage to convince a doctor, or you say, "this is ridiculous!" and stop eating gluten before you have irreparable damage.

There are many conditions that can cause intestinal distress, some even involving gluten in a secondary kind of way, like Lyme disease. Mercury toxicity can trigger all kinds of problems, as can the huge vaccine load that today's 2-year-olds have gotten.

Keep in mind, too, that although doctors will tell you that the biopsy is the "gold standard" of celiac disease diagnosis, many of us (not all of us, though, just to be fair!) believe that the biopsy is not nearly as accurate an indicator of celiac disease as bloodwork combined with dietary response.

And it's rather like telling someone who reacts mildly (itchy mouth, or rash, or nausea) to peanuts that they must keep eating peanuts until a strong enough reaction (like vomiting, or even an anaphylactic reaction) occurs, and only then will the doctors admit that the person is allergic to peanuts.

But if your doctor tells you that ""toddlers have diarrhea/constipation, don't worry," or "Indians don't have celiac," or "it's IBS--here, take some medicine to mask the symptoms," then RUN, don't walk, and find another pediatrician, preferably one who specializes in celiac and has lots of happy, UNMEDICATED patients.

If you do a search on this board, I think you'll find several others here of Indian heritage.

You are not off the charts--many of us here had the constipation/diarrhea back and forth before diagnosis.

Also, the villi are what produce lactase--which digests the lactose in milk, so her dairy intolerance might be a product of gluten-damaged villi. But it's also possible that she has a separate intolerance for dairy.

Welcome aboard!

[A&Z'S MOM]

Hi

I am new to this forum and i am wondering how would you know the difference between celiac vs. gluten intolerance or wheat intolerance. Is there any way to find out without an endoscopy. My DD is 27mths old and i wonder if she has one of these issues. We are of indian decent and this is very rare for us. The reason i wonder about this is because she has constipated stools very oftern followed by runny stools that have mucous in them, is this common for these intolerance or am i off the charts? I have meanwhile decided to take her off of milk, soy, and gluten to see if her stools improve. My DD has milk allergy and i think she may have soy intolerance so she is off those as well.

I appreciate any feedback as i am just starting down this road.

Thanks

Welcome to this forum

I am a pakistani with two kids, who have been diagnosed as celiac.My son had no syptoms except behaviour issues.My daughter had constipation and an enlarged belly,she was anemic most of the time.So We went for blood tests[celiac panel],which turned out postive.The next step was the endoscopy[considered gold standard for diagnosis]We didnot get it done becuase for me and my kids the high numbers in the blood test were enough.The GI was upset but then agreed and ran the tests again few months later.They were positive again but the numbers were lower,since i was eliminating glutne from their diets.

So if you want to get to the root of the issue go for some tests [allergy/celiac]first then eliminate soy/gluten.If your baby is not ingesting any of this then it won't show up on her tests.As for the mucos in the stools,does indicate some intolerance.It could be soy/gluten.There are folks here in this forum who have issues with milk too.And the milk protein is quite similar to gluten.There are no standard syptoms of celiac.They differ from person to person.A food diary can help you keep track of what your baby is eating and how her gut is reacting to it.

[Tim-n-VA]

I don't think this is semantics but I've read that Celiac is defined as an autoimmune disease, where the body

[nitu-752002]

Thank you all for your responses. My DD has milk/soy intolerance. I stopped these two foods but she continued to have mucousy stools and sometimes pasty so at 12mths we did a celiac blood test and it came back negative. She had an allergy test (scrach on her back type) and she was only positive for milk at 18mths. She was on breastmilk until 24mths and i was consuming gluten based foods during this time. Anyway, eventually her solid food intake picked up and she was eating small quantities of gluten based foods as well. She had normal stools at time, formed or she had sort of wet stools but only 1/day. She also had constipation if she didnt go regularly. I dont know if that was because she was still consuming rice cereal or not. Recently, she was having constipation again but when she finally had a BM she would pass hard stool first and then the stool would be very wet. She also is below the 5th percentile for weight but her height is stable between 40 -50%. I got fed up seeing her struggle with her BM so i have decided to do my own test and take her off of all gluten and see if she improves.

I dont know if i am going the wrong path but i just dont want her to struggle with her BM. I really hope she doesnt have celiac, i know its manageable but it would make life a lot easier for her if she didnt have to deal with it. I think i will keep her off gluten until she is old enough to tell me if her tummy hurts or to be tested again. She is 27mth old right now.

Thanks

[lizard00]

Thank you all for your responses. My DD has milk/soy intolerance. I stopped these two foods but she continued to have mucousy stools and sometimes pasty so at 12mths we did a celiac blood test and it came back negative. She had an allergy test (scrach on her back type) and she was only positive for milk at 18mths. She was on breastmilk until 24mths and i was consuming gluten based foods during this time. Anyway, eventually her solid food intake picked up and she was eating small quantities of gluten based foods as well. She had normal stools at time, formed or she had sort of wet stools but only 1/day. She also had constipation if she didnt go regularly. I dont know if that was because she was still consuming rice cereal or not. Recently, she was having constipation again but when she finally had a BM she would pass hard stool first and then the stool would be very wet. She also is below the 5th percentile for weight but her height is stable between 40 -50%. I got fed up seeing her struggle with her BM so i have decided to do my own test and take her off of all gluten and see if she improves.

I dont know if i am going the wrong path but i just dont want her to struggle with her BM. I really hope she doesnt have celiac, i know its manageable but it would make life a lot easier for her if she didnt have to deal with it. I think i will keep her off gluten until she is old enough to tell me if her tummy hurts or to be tested again. She is 27mth old right now.

Thanks

Testing in children is pretty inconclusive, ESPECIALLY before the age of 2. Largely because they just haven't had enough time to produce the amount of antibodies that would be necessary to show up on a test. If you want to have her retested, her chances of a more accurate test have improved, but the test itself is just not as accurate as we all would like.

As long as you are fine with not having a diagnosis, then do the diet and if it works, YAY! Because the doctors do try to get you to do a gluten challenge if you go to them.

[Fiddle-Faddle]

Whether or not you try a gluten-free diet, please do make sure that, if constipation is an issue, your daughter has at least one serving per day of "stone fruit" (peaches, pears, nectarines, plums, apricots, etc.) Fresh is best, but canned is perfectly acceptable if packed in juice (not syrup), and very convenient, as you can find individual portion bowls of already diced fruit.

Many non-gluten-sensitive children have intestinal issues simply because the typical American diet is NOT HEALTHY, and even for toddlers involves mostly junk food, such as Goldfish crackers, pretzels, buttered noodles, etc. Even the little applesauce containers--which sound healthy, because it['s fruit, right?--contain large amounts of high fructose corn syrup (which, despite the expensive commercials, should NOT be fed to little kids, as it is a leading cause of diabetes, since it raises blood sugar, but does NOT signal the pancreas to produce insulin).

If I were your doctor (and I'm NOT a doctor), the first question I'd ask is, exactly what is the child eating? I would want a typical day's menu of EVERYTHING going into the child's mouth.

Unfortunately, most doctors don't bother with such details.

[Fiddle-Faddle]

I don't think this is semantics but I've read that Celiac is defined as an autoimmune disease, where the body

[nitu-752002]

Hi

My DD is a very picky eater and i do wonder if she gets enough water but typically she eats the following:

Breakfast:

Infant Rice Cereal + Fruit Puree

Rice Milk

Lunch:

Chicken

Pear/Peach or Orange (usually fresh)

Pasta

Snack:

Rice Milk

Fruit Puree or Chips or Kidney Beans

Dinner:

Rice + veggies

Orange/Fresh Fruit

Rice Milk

I know the rice cereal can be constipating but is rice milk also constipating as she gets about 15oz of that per day. I'ld help any analysis of her diet.

Thanks

Nitu

[Fiddle-Faddle]

My goodness, nitu, that looks way better than what most toddlers eat!

Is the pasta gluten pasta or gluten-free pasta? If she IS gluten-intolerant, then the pasta would be enough to cause symptoms if it's gluten pasta.

I like to see a bit more protein in a child's diet, but don't know if anyone would agree with me on that. I'm just going by instinct on that, not studies.

I'd do something eggy in the morning (unless there's an egg intolerance), and fish or tofu at dinner. My kids always loved plain broiled salmon (stay away from tuna, though--too high in mercury).

Anybody else have ideas or insights here????

[nitu-752002]

Thanks. The pasta was gluten pasta but as of Tuesday no more gluten in her diet. She was a very picky eater and never really took much to food, even junk food except for potato chips which i give her now. I think she eats enough protein as she will eat a chicken leg at lunch, i do eggs usually at dinner every so often not daily. She doesnt like eggs very much so it has to be hidden in rice or something else. She was eating some bread but no more, i bought some gluten free bread today will give that a try.

No cheese, yogurt or dairy for her and so no ice cream, cookies or cakes etc.

[lonewolf]

I found this - it might be of help when planning your daughter's meals. My son was intolerant to dairy when he was a toddler too, so I know it can be tricky to have them get enough calcium and protein. Since she isn't having any dairy at all, you probably do need to make sure she gets some extra protein from meat, fish, poultry, or beans. Most kids get a significant amount of protein from milk, cheese and yogurt. I agree with Fiddle-Faddle - it looks like she eats better than most toddlers!

"When planning and serving meals to your toddler, try to have him/or her consume the following on a daily basis

2 to 3 cups of calcium - milk (or yogurt, cheese or other calcium rich foods).

4 servings of fruits and vegetables. (Serving size: one tablespoon per year of age.) One serving should be high in vitamin C and another in vitamin A.

4 servings of grains - bread and cereal. One should be an iron-fortified baby cereal. A serving is about 1/4 to 1/3 an adult portion (1/4 slice toast, 1/4 cup pasta).

2 servings of proteins - meat, beans, eggs, tofu, or peanut butter. A good serving of protein should be served at every meal. One serving equals 1/2 ounce. Courtesy of Parent'sPlace Nutritionist Q&A."

[nitu-752002]

My DD has been gluten free for only 2 days now but she had a BM today and it was hard stools followed by less formed mucousy stool....quite upset about that. May be i need to give this more time? Am I expecting too much too fast?

Also i gave her millet for the first time yesterday and today, could that cause problems? I often also wonder if her rice milk is causing her problems and finally her pediatrician wanted her on Duocal (corn based additive) to increase her fat and caloric intake, and i wonder if thats bothering her. She has eaten corn based fruitloop cereal for some time and i dont think it bothered her so i am hoping the duocal isnt a problem, any idea?

[baileybit]

Celiac disease is defined by gluten-induced villi destruction (the villi are what line the small intestine, and they both absorb nutrients and produce lactase, I believe).

The problem is, by that definition, celiac is basically end-stage gluten-intolerance. If you have celiac disease, your body is on a progression that results in villi damage (and lots of other kinds of damage to other parts of your body) because gluten triggers your immune system to attack YOU. But there is certainly a period of time where your body is reacting to gluten--but your villi are not yet destroyed enough to warrant an official celiac diagnosis.

At this point, doctors usually tell you that you don't have celiac.

So you either go back to eating gluten until you have enough damage to convince a doctor, or you say, "this is ridiculous!" and stop eating gluten before you have irreparable damage.

There are many conditions that can cause intestinal distress, some even involving gluten in a secondary kind of way, like Lyme disease. Mercury toxicity can trigger all kinds of problems, as can the huge vaccine load that today's 2-year-olds have gotten.

Keep in mind, too, that although doctors will tell you that the biopsy is the "gold standard" of celiac disease diagnosis, many of us (not all of us, though, just to be fair!) believe that the biopsy is not nearly as accurate an indicator of celiac disease as bloodwork combined with dietary response.

And it's rather like telling someone who reacts mildly (itchy mouth, or rash, or nausea) to peanuts that they must keep eating peanuts until a strong enough reaction (like vomiting, or even an anaphylactic reaction) occurs, and only then will the doctors admit that the person is allergic to peanuts.

But if your doctor tells you that ""toddlers have diarrhea/constipation, don't worry," or "Indians don't have celiac," or "it's IBS--here, take some medicine to mask the symptoms," then RUN, don't walk, and find another pediatrician, preferably one who specializes in celiac and has lots of happy, UNMEDICATED patients.

If you do a search on this board, I think you'll find several others here of Indian heritage.

You are not off the charts--many of us here had the constipation/diarrhea back and forth before diagnosis.

Also, the villi are what produce lactase--which digests the lactose in milk, so her dairy intolerance might be a product of gluten-damaged villi. But it's also possible that she has a separate intolerance for dairy.

Welcome aboard!

What do you mean by secondary gluten (ie Lyme disease). I was recently diagnosed with lyme disease, am nursing my son 4 1/2 months, who appears to have gluten intolerance which has gotten significanly worse since the Lyme diagnosis

[Fiddle-Faddle]

What do you mean by secondary gluten (ie Lyme disease). I was recently diagnosed with lyme disease, am nursing my son 4 1/2 months, who appears to have gluten intolerance which has gotten significanly worse since the Lyme diagnosis

There are many people on this board who have a non-celiac gluten intolerance (in other words, they have gluten intolerance that seems similar to celiac, but they do NOT have villi damage, nor do they have the genes associated with celiac) that seems to be CAUSED by Lyme disease. Their gluten intolerance disappeared or is expected to disappear when their Lyme is completely eradicated. My understanding is that some bacterial infections of the gut can cause symptoms identical to celiac.

I know very little about Lyme compared with them, so you might want to look them up and pm them.

I would guess, though, that your baby might have been infected in utero? I would NOT suggest stopping nursing, though, unless your Lyme meds are known to be a problem in breastmilk. (Then again, they might be what he needs?) I would consult both a Lyme expert and a lactation consultant about that.

If your son is only 4 1/2 months old, how do you know he is gluten intolerant? Is he reacting to foods you eat? (Certainly a possibility!) He's too young to be eating solids, and foods containing wheat (i.e., gluten) should not be given to a baby under a year anyway.