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jfem4

New Here And Axious

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Hi,

My son Charlie had an endoscopy last week. The MD called yesterday and wants to do a blood test for Celiac disease.

His biopsy came back with 2 of the 3 markers for thise disease. He had crypts, something in the villi, but did not have lymphocytes... his duodenum was the site that was affected...nothing in the stomach or esophagus.

The pathologist feels that he needs to have all 3 to be diagnosed.

So they are taking a blood test in a week to confirm or rule this out.

I don't know anything about this disease, and I'm not sure if he has the symptoms, but he may not need symptoms right?

He is 6 years old...he's about 58 pounds and is in the 95 % for his weight and height.

He has a voracious appetite, is full of boundless energy.

He's always been a gaggy baby/child. If he smells something/eats something that isn't right, he'll vomit.

Latelty, in the past year, it has progressed to very frequently-about 1-2 times per week of going to bed, and within a hour or so, getting up, not aware of anything ( night terror), holding his stomach, crying in pain, then eventually vomiing. HE does not remember anything.

There are times when he will vomit immediatly after eating...he feels great afterwards and usually will ask to eat again.

His all time favorite food that he eats everyday is pasta...which I read could be the culprit?

He will go through aperiod where he will vomit every day, or night, for about a week, then nothing for months.

The doctors are stumped a bit becasue he doesn't present like having Celiac in some ways, but does in other ways.

I have no idea what he meant by that.

I am at my wits end, worried, scared, anxious etc...

This is all new to me..I have 3 other children, 8,9 and 11...none have ever had issues....

If anyone has any ideas, I would be so greatful!!!!

Thank you in advance for any thoughts you may have....

Jane

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Welcome to the board, Jane -

I know it has to be hard for you, not knowing what to do to make your child feel better. Hopefully, after the blood test, you will have some answers. There are so many different symptoms, that it makes Celiac so hard to diagnose. An Endoscopy does not always show what they are looking for. When biopsy's are taken, only a few areas are tested. Areas that are not tested might show damage, but the diagnoses is made only on the areas that are biopsied.

This is a great place to look for answers. If it turns out that Charlie does have Celiac, at least you will have a diagnoses. Please feel free to ask any questions that you might have. Everyone here has been so helpful.

Good luck!

Cindy


Diagnosed with Celiac Disease April 2005

Diabetic

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Hi Jane ~

Diagnosing celiac disease can involve all, or a combination of, endoscopy, blood tests and dietary change. You are going to get a lot of "answers" to these questions because unlike, say --- diabetes---you don't simply run a certain set of tests and get a definitive "yes" or "no".

Endoscopy shows characteristic damage to the small intestine, but some doctors will run the blood tests as well (most do that first!). Some people say that the blood tests can throw false negatives, but generally speaking the tTg test coming back positive is a pretty clear sign of celiac. Some people are diagnosed via going on a gluten-free diet and seeing a great change in their health.

Celiacs present (show symptoms) in MANY different ways. My son was a classic weight-loss-diarrhea-joint-pain case; my husband only felt nauseus occasionally but his blood tests were also positive and his response to a gluten-free diet was dramatic improvement in his health. Everyone here has a different path to diagnosis and health.

It is often the case that once the gut is damaged past a certain point, symptoms worsen and new ones develop. Other food intolerances, like dairy/lactose, can crop up. Some of them will be temporary, some won't. Vomiting is sometimes a sign of a food allergy -- has your son been RAST tested?

Some doctors are very good with celiacs, some are not. You will need to advocate for your son and resist relying completely on the doctor. Once the blood tests are done, you may want to try a gluten-free diet and see if it helps. (Luckily there are lots of great gluten-free pastas out there!)

Hang in there! This is the scary part! Keep a positive attitude, try not to panic, and also don't overload yourself with information until you have more test results. We're here waiting with you :)

Joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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Wow!!!

Thank you guys so much for responding so quickly.

I am overwhellemed, scared, and just don't know where to turn.

Did your husband ever feel this way as a child? So he presents with just nausea? But after the diet, he felt better?

Charlie doesn't really have many symptoms except the vomiting, and as soon as he does, he's fine and resumes his eating.

I'm just worried that he is damaging the lining of his duodenum...and his symptoms will get much worse.

Is that what hapens? Eventually he'll present with those classic symptoms?

SHould I start him on the gluten-free diest before the blood test or will that alter it?

I'm just a bit concerned that the MD didn't know what it was...I mean, if he presents with 2 of the 3 markers, what else could it be right???

I know I have a ton of questions, but I don't see him until the 13 th!!!

Thanks again to the both of you!!

Jane

Hi Jane ~

Diagnosing celiac disease can involve all, or a combination of, endoscopy, blood tests and dietary change. You are going to get a lot of "answers" to these questions because unlike, say --- diabetes---you don't simply run a certain set of tests and get a definitive "yes" or "no".

Endoscopy shows characteristic damage to the small intestine, but some doctors will run the blood tests as well (most do that first!). Some people say that the blood tests can throw false negatives, but generally speaking the tTg test coming back positive is a pretty clear sign of celiac. Some people are diagnosed via going on a gluten-free diet and seeing a great change in their health.

Celiacs present (show symptoms) in MANY different ways. My son was a classic weight-loss-diarrhea-joint-pain case; my husband only felt nauseus occasionally but his blood tests were also positive and his response to a gluten-free diet was dramatic improvement in his health. Everyone here has a different path to diagnosis and health.

It is often the case that once the gut is damaged past a certain point, symptoms worsen and new ones develop. Other food intolerances, like dairy/lactose, can crop up. Some of them will be temporary, some won't. Vomiting is sometimes a sign of a food allergy -- has your son been RAST tested?

Some doctors are very good with celiacs, some are not. You will need to advocate for your son and resist relying completely on the doctor. Once the blood tests are done, you may want to try a gluten-free diet and see if it helps. (Luckily there are lots of great gluten-free pastas out there!)

Hang in there! This is the scary part! Keep a positive attitude, try not to panic, and also don't overload yourself with information until you have more test results. We're here waiting with you :)

Joanna

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We've all been in your shoes. Trust us when we say you won't always feel this panicked!

No, my husband felt fine, thinking the occasional nausea, gas, bathroom issues were just related to particularly stressful days or food he'd eaten. He could eat and eat and was always tall and rather thin, but felt okay. We were all tested after our son was dx, and my husband's tTg test came back borderline. He decided to try a gluten-free diet (mostly to support our son) and was astonished at how phenomenally better he felt on a daily basis. He never had a 'scope.

Don't start your son on a gluten-free diet until after the blood tests; it will alter the results. Yes, he could be damaging his insides, but the good news is that it will mend. My son was very, very sick and he is perfectly fine now. Looking back, we can see early signs at 4 but he wasn't really ill until he was nearly 9. Again, everyone's experience is different. Your son might continue with nothing new to add for years, but the damage will still be going on.

It could be a simple food allergy, it could be another GI inflammation. Rest assured, if he's celiac, you will put him on a gluten-free diet and within a month he should feel much better. My son is allergic to eggs, and it wasn't until we kept a food diary (a list of everything he ate every day, detailed down to the brand) that we realized what the common link was. He'd throw up spectacularly, and then feel fine!

If your appointment is the 13th, you should still be able to get the bloodwork done before then, at your hospital outpatient lab or local lab (we have both). Tell your doctor you'd like to do that now, so the results are available by the 13th. They can fax the lab script directly to the lab. Don't ask, you TELL them that's what you want. Be difficult if you have to, but polite. Once the bloodwork is through, you can go ahead and try a gluten-free diet even if you haven't seen the doctor yet. A gluten-free diet is, in the end, the most definitive solution.

You can do this! You are doing a good job already, finding out things and thinking about his future.


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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Not all celiacs present the classic symptoms ... in fact, I don't think MOST celiacs present them! There is also such a thing as an asymptomatic celiac with no symptoms at all.

I thought ANY damage to villi indicated celiac disease. I would definately ask your doctor what else could have caused the two markers he found. I also would research on the internet yourself to see if even the damage he found could indicate celiac disease. There's so much doctors do not know about celiac disease that I would definately research it myself.

You are off to a good start here. Don't worry too much, it's not that bad eating gluten-free. It's hard in the beginning, but it becomes second nature.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Here's a good article I found http://www.enabling.org/ia/celiac/spectrum.html. I've quoted part of it below.

The villi are the most important part of the absorptive system in the small intestine. Normal villi are long and slender, giving a healthy small intestine the appearance of a deep pile carpet. All these villi give the small intestine an enormous absorptive surface; if laid out flat it would cover an area the size of a tennis court.

Now consider the "worst case" scenario for celiac disease, where the villi are completely flattened. This decreases the absorptive surface down from a tennis court to about the size of a small table. So you have a dramatic reduction in the amount of area for digesting and absorbing nutrition from your food. But there are other factors to consider as well. The villi aren't just flattened, they are also inflamed; just like your skin is inflamed after being burned. It can produce pain. (But the pain is not as obvious and localized as it is for inflamed skin; you just know that there is pain in there somewhere.)

Often the villi are not completely flat. Dr. Murray showed a slide in which the villi were a little "stubby". In these cases the villi are still different enough to be classified as not fully formed. But then he showed a slide in which the villi appeared to be normal size. Many pathologists would look at such a case and be tempted to rule out celiac disease as a possibility. However, if you carefully examine the surface of the villi you'll see that there is a marked increase in lymphocytes, the small immune cells that reside in the intestine. It is the lymphocytes which are mostly responsible for the damage in the small intestine. These are the cells that are responding to gluten.

Dr. Murray talked about five degrees of severity of villi damage:


  1. 1. Healthy, undamaged villi.


  1. 2. Infiltrated villi. The villi are still standing up long and straight, but the is an increase in the surface lymphocytes.


  1. 3. Partially-shortened villi. The villi are somewhat short and stubby, and the crypts (the basement parts of the villi) are expanding and becoming inflamed.


  1. 4. Flattened villi. This is the typical or classic form of celiac disease, in which the villi are destroyed.


  1. 5. Burned-out villi. This can occur in older celiacs, where the villi don't necessarily have the ability to recover on a gluten-free diet.

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gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Here's a good article I found http://www.enabling.org/ia/celiac/spectrum.html. I've quoted part of it below.

Carla,

Thank you for that information... I'm a nurse practitioner, and I needed to read something like that...

The pathologist said the villi were blunting...so that would make sense.

I guess what I dont' understand is can you have celiac disease without having the lymphocytes present, and will they eventually be present. OR will he just present this way?

The classic Charlie was last night...we ate out and he had his usual pasta....within minutes,, he vomited..He had said that prior to ordering that his tummy hurt. HE had a big lunch, so he could have been full.

Anyway, 1 minute after he throws up, he wants more,so we order him more, and he proceeds to order another plate of pasta and eat it as if he never ate in his life.

He went on to have a restful evening, played, went to sleep and hasn't had an issue since.

WHat I don't get is, if the gluten is causing him to get sick, which I beleive is the cause...why after he ate the past the second time, didn't he vomit?? HE did't even complain of a stomach ache the rest of the night...

This is so confusing to me, and the probelm is that our MD is away!!!

Thansk for being so helpful...

I apologize for all the questions...

Jane

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No need to apologize for the questions! That's what this forum is for!

Having no lymphocytes is puzzling to me. I wonder if they were there and the lab just didn't see them. Labs aren't perfect. I know others here have talked about using the "right" lab, but I don't know which one that would be.

It seems that when someone is consistently eating gluten, they don't always have an immediate and severe reaction to it. It's like the body doesn't have the energy to constantly deal with the gluten. Then when the person goes gluten-free, many times that person will become hyper-sensitive to small amounts of it. I think since he eats gluten all the time that would be why the second plate of pasta didn't make him sick, but that's just a guess.

Tinkyada makes great gluten-free pasta. In fact, even if I didn't have to eat gluten-free, I'd probably still use it because I think it cooks up better. It comes in all shapes and sizes. He doesn't have to stop eating his favorite food, but you might have to start bringing it with you when you eat out. I'm glad his blood test is this week, I'm sure he's miserable.

The tips of the villi are the part that digest lactose. He might heal faster once he's gluten-free if he goes dairy-free for a few months. After the villi heal, then he can try dairy again, unless he ends up having a casein intolerance, which many celiacs do have.

I have six kids. In a household of 8, three of us eat gluten-free. None of us have celiac, we're "only" intolerant. It's not unusual to have three kids that don't need to eat gluten-free, but keep an eye on them, if your son has the gene, they have a good chance of having it, too. It doesn't mean they'll ever develop the disease, but it's something to think about if they ever have mystery health problems. Also, if I had the gene, I'd probably go gluten lite to avoid developing a problem from eating too much of it. Of course, gluten-lite is NOT an option for a celiac. Once you have it, it's for life.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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My daughter was diagnosed at 18 months old (she'll be 2 next week) Her only symptom before being diagnosed was vomiting... what you describe with your son is exactly what I saw in my daughter. We have been on a gluten free diet for 5+ months now and still when she has been accidentally gluten ed (at a friends house or eating out) I don't know until I change her diaper. She doesn't get the stomach cramps or anything like that just very hard stools and a rash on her bottom.

I was told she presented "Atypical Symptoms" she has always been in the 90%+ since birth and is still there but from everything I read there really are no "atypical symptoms" and that is why it is so often misdiagnosed as something else.

I was told to keep my daughter on gluten until all her tests were complete but we did cut back the amount of gluten a lot! I'd give her crackers one day, toast the next day, a slice of pizza etc... and the rest of her meals were gluten free.. I did make sure she did get gluten every day (I called it the 'poisoning' ) but she got it every day till the tests were over!

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The "no lymphocyte" thing is puzzling to the MD's as well...

I asked if he could have missed it and he said no.... THat there were no lymphocytes...

Could he be gluten intolerant, but not Celiac??? Please forgive me if that is a stupid question...this is truly not my area ( I'm in maternal health/ob/gyn) WHat's the difference?

If so, what would that mean? How would they determine that? Could that be it because he doesn't have the lynphocytes??

I'm happy about the pasta...do you think my other kids will like it, too? Do you cook a separate meal for everyone??

The thing is he's NOT miserable at all... he's my happiest/most vibrant, energetic child... THis is why I just don't get this...

The blood test is supposed to be next week, but I'm trying to get it for Tuesday or Wed of THIS week...

Did your children have endoscopy for diagnosis?

Thanks again for your time, with 6 kids, I'm sure it's limited!!

J

No need to apologize for the questions! That's what this forum is for!

Having no lymphocytes is puzzling to me. I wonder if they were there and the lab just didn't see them. Labs aren't perfect. I know others here have talked about using the "right" lab, but I don't know which one that would be.

It seems that when someone is consistently eating gluten, they don't always have an immediate and severe reaction to it. It's like the body doesn't have the energy to constantly deal with the gluten. Then when the person goes gluten-free, many times that person will become hyper-sensitive to small amounts of it. I think since he eats gluten all the time that would be why the second plate of pasta didn't make him sick, but that's just a guess.

Tinkyada makes great gluten-free pasta. In fact, even if I didn't have to eat gluten-free, I'd probably still use it because I think it cooks up better. It comes in all shapes and sizes. He doesn't have to stop eating his favorite food, but you might have to start bringing it with you when you eat out. I'm glad his blood test is this week, I'm sure he's miserable.

The tips of the villi are the part that digest lactose. He might heal faster once he's gluten-free if he goes dairy-free for a few months. After the villi heal, then he can try dairy again, unless he ends up having a casein intolerance, which many celiacs do have.

I have six kids. In a household of 8, three of us eat gluten-free. None of us have celiac, we're "only" intolerant. It's not unusual to have three kids that don't need to eat gluten-free, but keep an eye on them, if your son has the gene, they have a good chance of having it, too. It doesn't mean they'll ever develop the disease, but it's something to think about if they ever have mystery health problems. Also, if I had the gene, I'd probably go gluten lite to avoid developing a problem from eating too much of it. Of course, gluten-lite is NOT an option for a celiac. Once you have it, it's for life.

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My daughter was diagnosed at 18 months old (she'll be 2 next week) Her only symptom before being diagnosed was vomiting... what you describe with your son is exactly what I saw in my daughter. We have been on a gluten free diet for 5+ months now and still when she has been accidentally gluten ed (at a friends house or eating out) I don't know until I change her diaper. She doesn't get the stomach cramps or anything like that just very hard stools and a rash on her bottom.

I was told she presented "Atypical Symptoms" she has always been in the 90%+ since birth and is still there but from everything I read there really are no "atypical symptoms" and that is why it is so often misdiagnosed as something else.

I was told to keep my daughter on gluten until all her tests were complete but we did cut back the amount of gluten a lot! I'd give her crackers one day, toast the next day, a slice of pizza etc... and the rest of her meals were gluten free.. I did make sure she did get gluten every day (I called it the 'poisoning' ) but she got it every day till the tests were over!

So did she test positive to the blood test?

Have you noticed a change in her since the diet change?

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Could he be gluten intolerant, but not Celiac??? Please forgive me if that is a stupid question...this is truly not my area ( I'm in maternal health/ob/gyn) WHat's the difference?

I had always thought that damage to the villi was the definition of celiac. I've not heard of a doctor saying no celiac in the presence of damaged villi. Maybe someone else will have a more scientific answer! The board is slow on the weekends.

If so, what would that mean? How would they determine that? Could that be it because he doesn't have the lynphocytes??

Gluten intolerance can be determined by dietary response. Enterolab also tests for it, but with the damaged villi, I don't think it's necessary in your son's case. I would always confirm Enterolab's test with dietary response.

I'm happy about the pasta...do you think my other kids will like it, too? Do you cook a separate meal for everyone??

No one will notice it's not wheat pasta! I cook one meal for the whole family. Most "dinner foods" are naturally gluten-free anyway, so there's not a lot of change there. I have literally duplicated every dish I used to make. If there's something you like, ask here how to make it gluten-free, someone will know!

Did your children have endoscopy for diagnosis?

No, we don't have the celiac genes, we're gluten intolerant. We used Enterolab for two of us, then did a gluten challenge. My 18 year old daughter tried gluten-free on her own, then when she challenged, she decided to remain gluten-free.

I had the endoscopy and a gene test. Both were negative, but Enterolab and dietary response were very positive.

Thanks again for your time, with 6 kids, I'm sure it's limited!!

I'm happy to answer your questions! I am battling Lyme Disease and spend a lot of time on here answering questions to keep my mind busy since my body is so TIRED! My husband and kids run the house right now. :blink::lol:


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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If the doctor said that your son had villous blunting, that is a clear marker (that is what Celiac "IS" by definition---blunted/villous atrophy) of Celiac.

If you do not feel comfortable in this doctor's knowledge of Celiac, post on this board asking for a knowledgable doctor in your area. Its not worth the incorrect information, time, and effort to deal with someone who doesn't know a lot about it! Or, contact a local support group and ask who they would recommend.

We don't cook separate meals....everything is the same....but for some foods, I'll use corn torts and others will use flour torts. But for pasta, 9 times out of 10, we all eat 'my' Tinkyada (even when family is over). To give you an idea of how doable this really and truly is----we had a tailgate at a college football game that only had one Celiac (me!) and the whole tailgate was gluten free (minus the beer). This included me, some of my friends (also alums), my sister (a current student), her friends, my parents, my sister's friend's parents, etc.....Point is, all kinds of people who don't know about my food issues ate all this food and didn't know it was all gluten free (including a gluten-free pasta salad). There is definitely hope!

Dr. Fasano (a leading Celiac researcher/physician, www.celiaccenter.org) describes how Celiac is a "medical chameleon"---there are so many symptoms, and two people can present so differently (some have diarrhea, some constipation; some are obese, others are malnourished; some are near debilitated, some have no symptoms "silent Celiac")----so its is understandable to be confused.

Best of luck, and I hope that this site is helpful to you!

Laura

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To give you an idea of how doable this really and truly is----we had a tailgate at a college football game that only had one Celiac (me!) and the whole tailgate was gluten free (minus the beer).

We did this, too. My daughter, the college student, also eats gluten-free, and her roommate's father was very happy to stop by our tailgate since he is a celiac! He especially liked the brownies. We didn't have beer, we had vodka, rum and mixers.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Laura,

He said that the pathologist siad there had to be 3 things present:

1. the blunting of the villi

2. the deepening of the crypty

3. the lymphocytes present...

The lymphocytes were not present so he would not say that it was Celiac...

This disturbed me...how could one thing ,missing make them so unsure???

I know he has Celiac, or Gluten Intolerance...( still don't know the difference)

But I ammsure he has something that relates to one of those...now that I am really being vigialnt about watching him-it's so obvious to me.

I'm in NY...soes anyone know of any good MD's that specialize in this??

Jane

If the doctor said that your son had villous blunting, that is a clear marker (that is what Celiac "IS" by definition---blunted/villous atrophy) of Celiac.

If you do not feel comfortable in this doctor's knowledge of Celiac, post on this board asking for a knowledgable doctor in your area. Its not worth the incorrect information, time, and effort to deal with someone who doesn't know a lot about it! Or, contact a local support group and ask who they would recommend.

We don't cook separate meals....everything is the same....but for some foods, I'll use corn torts and others will use flour torts. But for pasta, 9 times out of 10, we all eat 'my' Tinkyada (even when family is over). To give you an idea of how doable this really and truly is----we had a tailgate at a college football game that only had one Celiac (me!) and the whole tailgate was gluten free (minus the beer). This included me, some of my friends (also alums), my sister (a current student), her friends, my parents, my sister's friend's parents, etc.....Point is, all kinds of people who don't know about my food issues ate all this food and didn't know it was all gluten free (including a gluten-free pasta salad). There is definitely hope!

Dr. Fasano (a leading Celiac researcher/physician, www.celiaccenter.org) describes how Celiac is a "medical chameleon"---there are so many symptoms, and two people can present so differently (some have diarrhea, some constipation; some are obese, others are malnourished; some are near debilitated, some have no symptoms "silent Celiac")----so its is understandable to be confused.

Best of luck, and I hope that this site is helpful to you!

Laura

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One of the TOP (and I mean top!) Celiac doctors is Dr. Peter Green at Columbia University's Celiac Center.

Here is their website---it is a wonderful educational source. http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm This might help answer some of your questions.

From what Celiac docs know, Celiac will cause blunted villi. But gluten intolerance will not.

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I'm calling him today...just ordered his book....

I need a second opinion..and the MD that I am using is from Mt.Sinai...It will be interesting to hear what he has to say.

Thank you very much for this information...

I am so stressed right now...I just want to find out what it is, and start to deal with it..you know?

This in-between is killing me!!!

I'm so h apy to have found this place!!!

Jane

One of the TOP (and I mean top!) Celiac doctors is Dr. Peter Green at Columbia University's Celiac Center.

Here is their website---it is a wonderful educational source. http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm This might help answer some of your questions.

From what Celiac docs know, Celiac will cause blunted villi. But gluten intolerance will not.

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Wow. What a great thread and they are giving you a lot of great information. Your doctor seems very good and thorough. Compared to a lot, he seems as if he's looking for the subtle details which is good. Most doctors wouldn't have even thought to look for Celiac in and asymptomatic patient. I would give him that much.

ABSOLUTELY DO NOT START A GLUTEN FREE DIET. THIS WILL ALTER THE TEST RESULTS AND MAKE THEM INACCURATE.

My son was very gaggy as a child also. We are playing the same game you are right now. The waiting game, and it's not fun.

Celiac Disease has over 200 symptoms and that is why every case presents differently. I highly suggest the Celiac book by Dr. Peter Green. It's excellent and very medical. Also, make sure they run the full panel of blood tests.

Just to clarify, the ttg and villous blunting are not 100% Celiac. That is why doctors pool all their info together. The big thing to have in an positive EMA and villous blunting. This is what we medically know about our son. Two copies of DQ2, hydrogen breath test positive for Lactose intolerance, elevated tTG (only slightly, but he had been on a gluten free diet 3 months when test was takend), and now they found abnormal mucosa and gastritis in his stomach. We had the biopsy done last Tuesday and I'm going crazy waiting for the results! If you read Dr. Green's book, he states that there are other conditions that can elevate tTG and flatten villi. They are other auto-immune disorders like Diabetes, Crohn's Disease, IBD, Hepatitis, and Liver problems. The test is specific, but not 100%. We are so glad we didn't just go off the positive tTG. They found gastritis which is a whole separate problem that Celiac couldn't have caused. It could be Celiac and a separate condition, or one whole separate thing causing all the problems.

We had an excellent doctor at the Universtity of Chicago. He is world renown and unbelievably smart. They are also ruling out EE and H pylori. I trust our doctor and I'm confident we will have answers soon. Our story was a nightmare and we're on Doctor # 6.

I really encourage you to go through with the blood tests and really be sure. If he has Celiac, the tTG is very sensitive and specific and I think you will get a lot of answers. If it's not Celiac, then you can explore the gluten intolerant theory on your own, as the medical community doesn't really diagnose a gluten intolerance. It might be a good idea to have him allergy tested as well. Also, have them check for a lactose intolerance.

Trust me, Celiac is very managable. Now, I'm worried about Crohn's and that makes Celiac look like a walk in the park. I think if people could pick a disease if they had to have one, Celiac would be on top. It's the only autoimmune disorder where the trigger is known. Good luck and stay calm. I know it's hard, but hopefull soon you will get some answers.

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Sorry, for all the errors in the previous post. I was in a hurry. Hope you can read through all the mess-ups. :):)

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rez, I thought your post was wonderful---thank you for sharing!

Its important to note that neither the EMA alone or the tTG alone is 100%. Dr. Green even talks about how if only one is used, people with Celiac can be missed. Thats why its so important to have the whole panel done.

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Rez,

Thank you for your amazing post... I have been so blessed here with an amazing amount of info and support.

The MD's didn't do the endoscopy b/c they were looking for Celiac...they thought it was reflux, but when the path came back-it pointed toward the blunting of the villi and the deepening crypts in the duodenum. They are puzzled at why no lymphocytes were present.

He said if he had all 3 , the pathologist would have diagnosed him w/Celiac..so now we are getting the blood test.

What is a full panel of blood tests? THe MD is calling me back today because I want to have them add a CBC to chekc if he is anemic, and just to check to make sure everything else is ok.

What is ttg? So having what he says are 2 out of 3 "markers" doesn't automatically make my son have Celiac? But he does have a gluten-sensitivity or intolerance, right?

What is a positive EMA? Blood test? How do I make sure I am getting that one done?

WHo si your MD in Chicago? We know a great MD there,too, not a GI though.

When will you have the biopsy results?

What is EE?

I'm sorry for all the questions, but I'm just learning all the terms... : )

MD # 6??? WOw that is a nightmare, but it seems as though you have found a great one, finally!!!

I completely understand about the Chron's...

Please keep us informed about the results,

Good Luck and many,many Thanks!!!

Jane

Wow. What a great thread and they are giving you a lot of great information. Your doctor seems very good and thorough. Compared to a lot, he seems as if he's looking for the subtle details which is good. Most doctors wouldn't have even thought to look for Celiac in and asymptomatic patient. I would give him that much.

ABSOLUTELY DO NOT START A GLUTEN FREE DIET. THIS WILL ALTER THE TEST RESULTS AND MAKE THEM INACCURATE.

My son was very gaggy as a child also. We are playing the same game you are right now. The waiting game, and it's not fun.

Celiac Disease has over 200 symptoms and that is why every case presents differently. I highly suggest the Celiac book by Dr. Peter Green. It's excellent and very medical. Also, make sure they run the full panel of blood tests.

Just to clarify, the ttg and villous blunting are not 100% Celiac. That is why doctors pool all their info together. The big thing to have in an positive EMA and villous blunting. This is what we medically know about our son. Two copies of DQ2, hydrogen breath test positive for Lactose intolerance, elevated tTG (only slightly, but he had been on a gluten free diet 3 months when test was takend), and now they found abnormal mucosa and gastritis in his stomach. We had the biopsy done last Tuesday and I'm going crazy waiting for the results! If you read Dr. Green's book, he states that there are other conditions that can elevate tTG and flatten villi. They are other auto-immune disorders like Diabetes, Crohn's Disease, IBD, Hepatitis, and Liver problems. The test is specific, but not 100%. We are so glad we didn't just go off the positive tTG. They found gastritis which is a whole separate problem that Celiac couldn't have caused. It could be Celiac and a separate condition, or one whole separate thing causing all the problems.

We had an excellent doctor at the Universtity of Chicago. He is world renown and unbelievably smart. They are also ruling out EE and H pylori. I trust our doctor and I'm confident we will have answers soon. Our story was a nightmare and we're on Doctor # 6.

I really encourage you to go through with the blood tests and really be sure. If he has Celiac, the tTG is very sensitive and specific and I think you will get a lot of answers. If it's not Celiac, then you can explore the gluten intolerant theory on your own, as the medical community doesn't really diagnose a gluten intolerance. It might be a good idea to have him allergy tested as well. Also, have them check for a lactose intolerance.

Trust me, Celiac is very managable. Now, I'm worried about Crohn's and that makes Celiac look like a walk in the park. I think if people could pick a disease if they had to have one, Celiac would be on top. It's the only autoimmune disorder where the trigger is known. Good luck and stay calm. I know it's hard, but hopefull soon you will get some answers.

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The difference between gluten intolerance and celiac is that celiac has villi damage and gluten intolerance does not, so if he ends up being diagnosed, I believe it will be with celiac rather than gluten intolerance.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Thank you for clearing that up!!!

Jane

The difference between gluten intolerance and celiac is that celiac has villi damage and gluten intolerance does not, so if he ends up being diagnosed, I believe it will be with celiac rather than gluten intolerance.

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