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gfreston

Advice For A Celiac Mom Wondering If Her Kids Have It

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I need some advice! I am a celiac mom (diagnosed through blood test after my sister had positive biopsy. since then both my mom and my other sister were diagnosed). I have two boys - 6 1/2 and 3 yrs. Both have always had mostly loose, odorous :wacko: stools. But I wouldn't exactly call them diarrhea - most of the time.

My older son had a blood test when he was 4 yrs old that came back "negative" but gave almost no specific info to help me interpret his results. (All it said was: "Endomysial Ab, IgA Screen: none det, Endomysial Ab, IgA Titer: not done.") I've always been suspicious that the test was not accurate. He never complains of stomach pains. He eats like a horse and is growing very normally. He does have a pretty big belly - which makes me wonder. He potty trained at age 3 with no difficulty.

My younger son has never been tested. But he is in the potty training process right now and I wonder if his experience might be indicating celiac. He is 3 yrs and 3 months old and seems to be able to hold his urine, when he wants to. But his poops are so loose I wonder if he just can't control them enough to go in the toilet, or whether he's just not ready to potty train yet. I can't tell. He does seem to be getting skinnier - but not unhealthily so.

I know I should go ahead and have them tested. But, my experience with the blood testing of my older son was pretty frustrating. Anytime I've mentioned the loose stool to the pediatrician, they ask about his diet and they find out that both of them have a pretty high fiber diet - especially lots of fruit. I know they would have them tested if I ask - since I have celiac disease. But they were the ones to request my older son's first test. And I don't want to put the boys through the biopsy if I don't have to. I wonder if a gi would even see them given their slight symptoms.

I am considering going the EnteroLab route, but will have some serious convincing to do with my husband to pay out of pocket the $700+ - since neither one seems to be "sick" or in pain. Maybe one of the individual tests would be a less expensive route?

Have any of you ever just done the gluten-free diet with your kids, without having any other testing? Are there any big drawbacks to doing this? My reservations with doing this are:

1. What will be my criteria for assessing whether the diet has been helpful? The only symptoms seem to be loose stools. Although, someone in a message board post mentioned behavioral stuff like explosive temper and my older son definitely has this.

2. If they go gluten-free without testing, will I be able to convince their doctors in the future that they actually have celiac disease? Or will I have to go back and do the blood/biopsy/or stool tests anyway?

Any advice you can give me from your own experience would be welcome! Thank you.

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Couple things you can do:

1. you don't need a doctor's diagnosis to keep your kids off gluten. You don't HAVE to have them do a biopsy. you might not be able to say "celiac" but gluten intolerance. You don't have to prove anything to a doctor...there are no prescriptions necessary.

2. What I would recommend doing is two fold. Find a doctor knowledgable about Celiac. Take both of your kids in, and have the FULL celiac panel run. (see list here: http://www.celiaccenter.org/faq.asp). Also, ask to have them gene tested. (HLA-DQ2 and HLA-DQ8 are the two 'main' identified Celiac genes). Prometheus is a lab that most drs use and has a great reputation. This way, bc of your history, you would have a chance of insurance covering it. This way, you will know even if the test is negative, if there is/isn't a risk of them one day having celiac. (this is not to say that they couldnt have non-celiac gluten intolerance, which do not share the same genes and do not show up on traditional bloodwork). You cannot be dx'ed through enterolab with celiac...only gluten intolerance. If the gene test is negative, it means they 'probably' won't ever have celiac (although, there is a small (1-2%) percent of Celiacs with different genes). Leading experts recommend that all first degree relatives are blood tested, so a good doctor would comply with these wishes. Just remember, that having the gene does not mean that they have it, or even that they will develop it later on. But, you won't have to keep doing bloodwork every few years or anytime he gets sick, etc to see if he has it "now."

3. no matter the results of the tests, it might be worth it to try a gluten free diet (strict, to get the real benefits!). But, IF you want testing (and there are various opinions, but having a diagnosis, if possible, is easier), do not start them on the diet until all of their testing is complete.

Hope this helps. let us know what else we can do!

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Guest nini

regardless of what the blood tests say I would get the pediatricians support on a dietary trial. That's what we did with my daughter. Her blood test was negative after I was positively diagnosed, but her pediatrician agreed to try the diet to see if it would help. It definitely helped, and while her official diagnosis is Not Celiac because technically Celiac is confirmation of villous atrophy, we know she is gluten intolerant and needs to be off gluten for life to prevent ever developing Celiac. We do have a Dr.s note on file for school that states that she is gluten intolerant and must be on a strict gluten free diet. That's all we've needed as far as school and daycare was concerned.

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I am a Celiac mom also and did not know what to do about testing my son who is now 22 months. I watched him from birth and when I first started introducing gluten foods, I thought he reacted slightly. But I questioned myself a lot because I thought I was being overly cautious. He had occasional rashes, loose stools and diaper rash. He also seemed tired a lot, but very active at the same time. His height and weight were always fine. But something just kept nagging me so I thought I would ask the Ped to run the tests. Well the lab lost most of the bloodwork. His gliadin antibodies were normal, but the tissue transglutaminase test was not done. I decided to go with Enterolab b/c I didn't want to do another blood draw right away and he tested quite high for gluten and milk sensitivity. But he didn't have the main Celiac gene, just 2 gluten sensitivity genes (which most people seem to have). So I was definitely confused but immediately took him off of all gluten and milk. His skin and diaper rash improved and his stools were more formed. I didn't notice a dramatic difference because his symptoms were slight to begin with. Then he started having Eczema again and the doctor ran some additional allergy tests and repeated the Ttg gluten test. Everything came back normal (I think he was reacting to his diapers as well as peas and green beans). The Ped basically ignored the Enterolab tests and said everything is fine. Well, I have been reading a lot and it seems that entire families can have Celiac or gluten intolerance. I almost think that if one person in your family has it, you will probably feel better not eating gluten. I go back and forth a lot about whether to reintroduce gluten to see what would happen to my son. But I went undiagnosed for 25 years and have a lot of medical issues as a result. I just wish I knew more about Enterolab. There is some controversy surrounding that Lab, but the best thing to do is to try the gluten free diet. Even if the changes are subtle then you know it is working. I just wanted to let you know that other Moms struggle with the same questions you have. It is all very confusing and I do not think the testing for Celiac is always accurate. Go with your gut though and based on your post it seems that you are concerned about their subtle symptoms. You do not need an official diagnosis to try the diet. I still do not think my Ped gets it that just because my son's Celiac panel was normal does not necessarily mean he is not gluten sensitive. I just tell people he was diagnosed with Celiac through bloodwork. It is much easier than trying to explain everything. And I always get, "Well, maybe he will grow out of it." Then I have to explain that it isn't a childhood allergy. I wish I had some better answers for you, but I have found that when I question if I am doing the right thing, I try to remember my gut instincts. I also know that my son is happy and healthy and the gluten free diet definitely cannot hurt him. Best of luck and let us know how things go.

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W/o even reading your whole post - please don't have them go gluten-free before actually getting them tested. I have celiac diagnx'ed by both blood test and biopsy. All 3 of my kids have been tested so far and none of them have it but test will be repeated every 3 years.

Make sure they are getting gluten in their diet, then have your pediatrician do the TTG-Iga antibody test. I basically just said I want it done on all 3 and they were happy to do it.

It's important that they get the diagnosis accurate the first time around.

A

I need some advice! I am a celiac mom (diagnosed through blood test after my sister had positive biopsy. since then both my mom and my other sister were diagnosed). I have two boys - 6 1/2 and 3 yrs. Both have always had mostly loose, odorous :wacko: stools. But I wouldn't exactly call them diarrhea - most of the time.

My older son had a blood test when he was 4 yrs old that came back "negative" but gave almost no specific info to help me interpret his results. (All it said was: "Endomysial Ab, IgA Screen: none det, Endomysial Ab, IgA Titer: not done.") I've always been suspicious that the test was not accurate. He never complains of stomach pains. He eats like a horse and is growing very normally. He does have a pretty big belly - which makes me wonder. He potty trained at age 3 with no difficulty.

My younger son has never been tested. But he is in the potty training process right now and I wonder if his experience might be indicating celiac. He is 3 yrs and 3 months old and seems to be able to hold his urine, when he wants to. But his poops are so loose I wonder if he just can't control them enough to go in the toilet, or whether he's just not ready to potty train yet. I can't tell. He does seem to be getting skinnier - but not unhealthily so.

I know I should go ahead and have them tested. But, my experience with the blood testing of my older son was pretty frustrating. Anytime I've mentioned the loose stool to the pediatrician, they ask about his diet and they find out that both of them have a pretty high fiber diet - especially lots of fruit. I know they would have them tested if I ask - since I have celiac disease. But they were the ones to request my older son's first test. And I don't want to put the boys through the biopsy if I don't have to. I wonder if a gi would even see them given their slight symptoms.

I am considering going the EnteroLab route, but will have some serious convincing to do with my husband to pay out of pocket the $700+ - since neither one seems to be "sick" or in pain. Maybe one of the individual tests would be a less expensive route?

Have any of you ever just done the gluten-free diet with your kids, without having any other testing? Are there any big drawbacks to doing this? My reservations with doing this are:

1. What will be my criteria for assessing whether the diet has been helpful? The only symptoms seem to be loose stools. Although, someone in a message board post mentioned behavioral stuff like explosive temper and my older son definitely has this.

2. If they go gluten-free without testing, will I be able to convince their doctors in the future that they actually have celiac disease? Or will I have to go back and do the blood/biopsy/or stool tests anyway?

Any advice you can give me from your own experience would be welcome! Thank you.


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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My husband was diagnosed with Celiac at age 23. Before we decided to start a family we did discuss this issue with his GI specialist. When our daughter was born, we were advised to give her gluten foods as part of her diet because she needed the exposure to build the antibodies. We had her tested at age 13 months via blood test b/c she had the "typical Celiac body--- round protuberant belly, flat bottom" and was gaining weight slowly. Her routine blood panel was negative. In August 2006 at age 32 months, we saw an Immunologist/Allergist who ordered a specific Celiac panel with all Ig panels to be tested and blood work for anemia and specific food allergens. Again, all tested were normal. It wasn't until October 2006 at age 34 (just 2 months after the last testing) that our GI doctor decided to go an endoscopy to actually check on the state of our daughter's GERD. They biopsied while there and also ran blood panels and the gene marker DNA testing. We got a call 5 days later--- biopsy was 100% indicitive of Celiac and she 100% confirmed had markers. They told us that it is absolutely possible for a child to have negative tests and then a positive b/c her antibodies must not have been strong enough to be detected at earlier ages. We did all of our various testing at Children's Hospital of Philadelphia. They just started a Pediatric Celiac Center. Every specialist and pediatrician we have worked with has strongly told us that a child should be kept on a gluten diet unless specifically diagnosed. They did say it is okay for me to follow a gluten-free diet myself though even though I am not diagnosed b/c it's just for consistency in our household. We will have all future children tested at their first birthday and then as prescribed by our GI doctors to keep an eye out for another potential diagnosis.

My husbands parents have finally decided to be tested themselves so we can start to figure out the familial patterns of this disease.

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Every specialist and pediatrician we have worked with has strongly told us that a child should be kept on a gluten diet unless specifically diagnosed.

What if you cannot get a specific medical diagnosis? My concern is that doctors are encouraging patients to eat gluten long enough for damage to show up via blood or biopsy. I just really don't understand this. Why not prevent the damage? I know parents do not want to take their children off of gluten for no reason, but if you strongly suspect gluten issues and have a family history then it is not a crazy idea to try a gluten free diet without a specific diagnosis.

Neither of my children has the official dx. One was tested by blood test several times and it was negative. My grandmother had celiac so I knew it was a possibility. She feels better and acts better gluten-free. My other daughter acts much better gluten-free. She had an explosive temper on gluten and casein. I don't get why those specialists think it is so important to eat gluten when the benefits of avoiding it are so great. Even if my daughter is not a celiac, she couldn't have been happy acting the way she was when she was eating gluten.

You could do the antibody test to gluten for $99. I started with those tests and after they were positive and we had done the diet a while, I had other tests done just to get more information. They use the same sample each time even if you wait a while so you would still know how things stood at the beginning.

Going with Enterolab, you might have trouble convincing the doctors that they actually have celiac disease but that might be a positive since it won't be on your insurance records. My doctor is skeptical but as long as she respects my decision to have gluten free medicine, it doesn't really matter if she believes it.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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I think it is a very personal decision to make, and one that is difficult.

I know most doctors would recommend to keep kids on gluten until you get a positive dx. This is their job, to make a dx. I understand this completely, and coming from a healthcare field myself, it makes sense. But, after my daughter received a positive dx, the plan didn't change at all. We were told to keep her gluten free, and we were pretty much sent on our way.

Now, bear in mind, this is just my opinion! You can take it or leave it, lol. But as a mother, I feel like it is my job to have my kids feel the best they possibly can so they can reach their maximum potential. I had my 2 and 7 year old tested, which came back negative. But they had many symptoms, and I in good faith could not watch them be sick just in order to get a positive dx. I already knew what could potentially make them feel better, and I gave it a shot. Many of their subtle symptoms cleared up, and my 7 year old is MUCH happier on the diet. I have had no trouble with the school or teachers, even w/out a doctors note. I don't see this diet as much different than being vegetarian or requiring kosher foods.......it's our lifestyle, I believe my kids are better off w/out gluten, and the school has not had a problem with that.

I should mention that I also don't expect the school or teacher to provide anything special for my son, I supply everything he needs, so it really isn't any more trouble for his teacher.

This is what was right for my family, but I wouldn't say it is right for everyone. Good luck with what you decide!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Guest cassidy

This is a personal diagnosis. You could always try keeping them off gluten for a month and see if their stools get better. If so, then you have your answer. If there is no change, then you could do the testing route if you wanted to.

I'm sure this is a tough decision and you want to do what is best for your kids. I was a very sick kid - had celiac all along but no one could figure it out. I was put through blood tests, endoscopies, and major surgery (never checked for celiac) all because they couldn't figure it out. I still break out in a sweat when I need a blood test. I remember when I was little and they strapped me down to take my blood because I was so upset. That was traumatic and I still remember all thsoe things. I'm not trying to scare you but as a kid that went through a lot I wish that I could have tried the diet and avoided all that - I would have done it in a minute.

As an adult had the celiac blood test and it was negative. I went on the diet and I was better in a few weeks. If the tests were 100% or even 95% accurate, then I can see getting a diagnosis, but they aren't.

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I would get the testing.

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This really is a hard decision to grapple with. Here is what I did. I am quite certain that I have celiac disease. I have the 2 main genes for it with MANY symptoms. I have now had 2 small bowel biopsies which both came back negative. I went off gluten anyway and I am healing. It is a fact that some people have celiac disease but not enough damage to show up in a biopsy. Both my 8 year old and 4 year old were what you would consider healthy and without digestive problems. Because of my genes, I had them tested through EnteroLab (yes, it is expensive and at the time we winced about spending the money- but now have no regrets). The results came back indicating that they were both reacting to gluten and casein! I put them on the gluten and casein free diet feeling guilty because I hadn't really PROVED that they had this. That was about 4 months ago. Well, now if they get gluten or casein they have very obvious mood reactions and they get diarrhea. I was amazed because they never had the diarrhea before. Appparently as you heal and your immune system gets stronger you have more sever reactions to gluten. So this was confirmation to me that even though my kids never seemed ill, their immune systems were indeed fighting with gluten and casein. Good Luck, I know this is a lot to think about.

Sarah


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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All right - here's my concern just for the sake of putting it out there and I know others may not agree.

But I think I'd really question Enterolab as a parent - I understand they can only diagnose intolerances and for "genes" - which, yes, if you remove that food then you'll be feeling better. But if you really have Celiac - you need to get that medical doctor involved because ingesting gluten for a Celiac is an autoimmune disease - it's not just an intolerance - you're dealing with a condition that has very significant, serious long-term consequences and you need a trained medical physician who can follow you along for the whole process, watch your progress, get you a good bonescan and see if you need additional testing for anemia, cancers, etc.

I just feel really strongly that as a parent to 3 children and biopsy diagnosed Celiac, I want a physician there monitoring everthing...

It seems that every single person that I've heard sending "stool" away to Enterolab gets a positive back on something.

I just worry that when it's your kids you've got to be really, really careful.

I don't know - just throwing that out there...


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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Definitely get the testing. (I didn't read all this) My 3rd son is the one with celiac disease. I thought both my other one's at different times could have celiac disease, because of the way they were behaving (dropped on the growth chart), strange stools, etc. Well, I had them both tested and the tests were negative. They continue to eat gluten and be fine now. They have both just recently moved up on the growth chart alot and are thriving. It isn't worth imposing on a child that "may" have it. My 3rd son though definitely has celiac disease, but he never had the endoscopy. He had tons of diarrhea, was in pain, etc. and lost down to the negative 10th percentile and now 18 months later he is in the 10th percentile and doing great. It was SO obvious with him and the testing isn't accurate in a child a year old. It was proof enough for everyone that knows him.

GOod luck,

MOnica

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I agree that it would be nice to have an excellent doctor guide your progress once diagnosed with Celiac. The problem is finding a great doctor who understands the disease. And what about those who have ALL of the symptoms, but who test NEGATIVE? Do you keep feeding your children gluten if the tests are negative, but the symptoms continue? Personally, I think in the future they will find that Celiac, gluten intolerance and gluten sensitivity are all the same diagnosis and cause the same damage. I just think Celiac shows up different in each person and the testing just hasn't been completely refined yet. I am continually amazed when reading this board and hearing so many stories of people who were so ill, had every symptom of Celiac, tested negative, but went on the diet with dramatic results. I agree that more needs to be learned about Enterolab. As for finding a great doctor, that can be difficult. I cannot even begin to tell you how many doctors I saw over the years who said they didn't know what was wrong. I finally found a great doctor who diagnosed the Celiac. As for my son, he tested negative through blood, but positive through Enterolab. He is on the diet and seems much better. If testing improves in the future, I may challenge the gluten, but for now he is much happier and healthier on the diet. I have learned much more from this board and other research then I ever learned from any doctor. But I would still try the testing first and then go from there. There are some good doctors out there you just have to search.

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I just feel really strongly that as a parent to 3 children and biopsy diagnosed Celiac, I want a physician there monitoring everthing...

I just worry that when it's your kids you've got to be really, really careful.

I don't know - just throwing that out there...

In a perfect world of medicine, you are right. However, when celiac disease begins and when it is finally diagnosed can be decades for some people. Those who have a positive biopsy from the beginning are fortunate, but they are the exception. Exposing children to a biopsy which is invasive, looking for damage that may or may not be there and still can't rule out whether the child has celiac disease seems risky. I agree with running tests in children for sure, but only biopsy in extreme cases. Just my opinion. As far as being really really careful when it comes to your kids, that is exactly what I am doing. I'm not waiting for the damage to show up later in life so they can suffer like me and have positive work and then a negative biopsy. The diet alone will let you know whether gluten is toxic to your body. And it really doesn't matter whether it is an intolerance or celiac disease (which as another poster explained are probably the same thing anyways-time will tell) because you need to abstain from it completely either way.


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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"And it really doesn't matter whether it is an intolerance or celiac disease (which as another poster explained are probably the same thing anyways-time will tell) because you need to abstain from it completely either way."

I would disagree. Intolerances and food allergies do not cause long-term damage to the small intestine -- Which is an area that's susceptible to lymphoma if you are not correctly treating Celiac Disease. I just think with Celiac you need to make sure you and your doctor AGREE on the diagnosis and there's a plan that you come up with to monitor the condition carefully.

I happen to agree with biopsies of the small intestine (I know, I'm probably difft. than the majority) but Celiac can ALSO mimic other real conditions - ulcers, esophagitis, Crohn's - I think docs are not only checking for Celiac when they go in there but they need to get a good look at the damage that's going on so far. That's really important because, let's say you're biopsied now, you have mild celiac damage at the time - or none - you go on for a few years and do good on the gluten-free diet then start to have reoccurring symptoms 10 years down the road. They're going to want to compare that first biopsy with a second to see what's going on.

I also worry that by taking away some of the nutrients that are available in wheat, rye, barley and oats from kids who are in their growing phases that don't have biopsy-confirmed, or M.D.-confirmed celiac...other serious nutritional issues could arise. While the Celiac diet is a good one, it's not perfect.


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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Guest nini

Amanda, I'm struggling with how to say this. In a perfect world you are correct, but this is not a perfect world. Ideally we would all love to have a great knowledgable Dr. following our progress all the way. After I was positively diagnosed with Celiac by my gastroenterologist, he set me free... turned me over for continued care by my primary care dr. Then he moved and I had to find a new one. My new Dr. has YET to have run any blood work on me and I've been in to see her three times already. I'm supposed to go see her next week and I'm going to insist on some basic labs to make sure my cholesterol and thyroid and all that other stuff are back in the normal ranges like they are supposed to be (my last Dr. said they were headed that way and took me off most of my prescriptions)

With my positive diagnosis and subsequent turnaround on the diet I know I have Celiac, and knew to look for it in my daughter. Her blood test was negative despite having ALL the same symptoms that I had as a child (and I as an adult now have confirmed Celiac). Her pediatric GI said that she couldn't possibly have Celiac with a negative blood test result and therefore no biopsy was ever ordered, nor would I have put my child through that even if it was. With her pediatrician's support we tried the diet to miraculous results. She only goes to the Dr. for well visits once a year now (she is very rarely sick anymore... knock wood) So the gluten free diet obviously is agreeing with my child, it can be a much healthier diet than one containing wheat. Wheat and other gluten containing grains are NOT the healthy foods that everyone is led to believe that they are. No not just my opinion either. I work with a licensed Dietician and Dr. of Chiropractic that preaches about the evils of wheat and gluten for EVERYONE. Wheat is a hybridized WEED, it is actually toxic to a normal human's immune system, not just a person with Celiac or gluten intolerance. It is incorrect to suggest that a diet containing wheat is the only way for growing children to get certain nutrients. There are far healthier grains out there for fulfilling the same nutrient requirements, and those are naturally gluten free, like quinoa, teff, millet, flax, amaranth, buckwheat, and on and on...

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Nisla,

I was hoping you and others here would get in on this thread and help out. Thanks for posting. :)

Sarah


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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Guest nini
Nisla,

I was hoping you and others here would get in on this thread and help out. Thanks for posting. :)

Sarah

I had thought I had posted already in this thread, but I think I was ignored...

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Nini, etc...

I'm sure some of my posts on here might be frustrating to others - I certainly apologize...I just want to make sure that for some of those who are new on the board or are just starting out on this Celiac journey that they see that there are some good docs out there and it can be helpful to get that medical Celiac diagnosis.

My experience has been very different from most of you, I'm assuming (or hearing). I have a doctor who's totally on the ball. Very good about testing for Celiac with pretty much all her patients. Not only that, but I also have a family practice doc who's been great too...and knows about Celiac. I guess I just don't know any different ... I've got a pretty strong relationship now with both my gastro and doc and ped docs...so I just think it's possible...

Hope this makes some sense...Thanks - A


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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Guest nini

yes Amanda, you are one of the lucky ones, there are a few good Dr.s out there that are knowledgeable about Celiac and are willing to listen to their patients and work with them. Unfortunately I've had to be a very vocal advocate for my child's health care because her pediatrician didn't know much of anything about Celiac, and the GI dismissed us completely out of hand. (and he's supposedly a Celiac expert). The fact remains that ultimately we as parents have to be advocates for our children if the medical community has failed us.

I wish I could say I was lucky and had great Dr.s, but I didn't and I think that is partly why I am so vocal about trying the diet regardless of test results and sometimes even instead of testing.

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My experience has been very different from most of you, I'm assuming (or hearing). I have a doctor who's totally on the ball. Very good about testing for Celiac with pretty much all her patients. Not only that, but I also have a family practice doc who's been great too...and knows about Celiac. I guess I just don't know any different ... I've got a pretty strong relationship now with both my gastro and doc and ped docs...so I just think it's possible...

Amanda,

Just wanted to add that also sometimes you can have a wonderful on the ball doc and still not get a positive biopsy. My GI doc is excellent and after 2 neg biopsies told me to try the diet anyways. My point wasn't that docotors aren't worth working with. Not at all. My point was that even with the best doctors, celiac can be missed.


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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