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buckeyenc5

Gi Said My Toddler's Biopsy Was Inconclusive?

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Hi. I'm new here. I am at my wits end and exhausted. My daughter Faith is 20 months old. Last year on her 12 month check-up, they labeled her Failure To Thrive. Since then we have been on a roller coaster of specialists and diagnostic testing. We did the whole Cystic Fibrosis thing. Negative thank God. For the last several months we have been on the Shwachman-Diamond Syndrome ride, which is very scary. We went to a new GI today who dropped a bomb: Faith's biopsy from last year was not normal as her old GI said. It is "in-betwee" and inconclusive. What does that mean? She had the biopsy at a time when she had zero appetite and went days without eating due to duodenal ulcers. Also, she had a Transglutamase antibody IgA test at 13 months old, which was negative. What are the chances it has been Celiac this whole time? Should I just go ahead and start a gluten-free diet? I'm very confused and hate to put Faith through another biopsy, as she's been through so so much testing already. Thank you

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Not exactly sure what the doctor means, but she either has celiac or she doesn't. So if it's "in-between" I'm guessing there might have been slight damage in one spot or not enough damage that the doctor wanted to diagnose her. Many doctors feel that the gluten free diet is just too hard, there's no way they want to "sentence" you to a life of not eating gluten! [Even though I would argue that sentencing someone to a life without gluten is the humane thing to do.] I would go gluten free right now since it seems highly likely this is the problem. It's certainly worth a try with the health problems you've had.

You should be able to go into the doctor and get the films/slides from her biopsy and have another doctor read them if you're looking for a better explanation from a doctor on what "in-between" means. But if it were me, getting her slides re-read is a far as I'd go in pursuing a diagnosis. I wouldn't bother with an additional biopsy - you'll know if gluten free is right once you do it. Good luck.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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My daughter had her biopsy at about age 2. It came back "inconclusive". The only positive is that she had a gene for Celiacs. The short version is that someone finally said the right words to me "a pregnancy test is not inconclusive. You are either pregnant or not." Same with Celiacs. The "inconclusive" or "inbetween" result means they could not rule out Celiacs. That is usually the goal of testing. Rule it in or out. Since they could do neither, consider doing the gluten-free/CF diet for a few months. My daughter was close to 2.5 yr old when she finally did a gluten challenge. Within a week there were small changes. Then the starvation hunger went away and the poops became controlable. Finnaly an accidental glutneing and wham everything came right back with a vengance. She is a Celiac. That is all the testing I needed. She is growing, gaining weight, behavior is back to normal ranges, etc.

So I would say that you have done everything you can for a true medical diagnosis and you couldn't get one. Now try the gluten-free/CF diet for a few months. You will probably see drastic differences pretty fast if she is a Celiac. Be sure to be 100% gluten-free/CF for the challenge.

Good luck! Normally you don't hope for a disease, but I hope Celiacs is the solution to her problems. It is livable, doable, and no daily meds or side-effects.

Also, let me know if you need some food ideas or help getting started on this diet for a toddler.

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Not exactly sure what the doctor means, but she either has celiac or she doesn't. So if it's "in-between" I'm guessing there might have been slight damage in one spot or not enough damage that the doctor wanted to diagnose her. Many doctors feel that the gluten free diet is just too hard, there's no way they want to "sentence" you to a life of not eating gluten! [Even though I would argue that sentencing someone to a life without gluten is the humane thing to do.] I would go gluten free right now since it seems highly likely this is the problem. It's certainly worth a try with the health problems you've had.

You should be able to go into the doctor and get the films/slides from her biopsy and have another doctor read them if you're looking for a better explanation from a doctor on what "in-between" means. But if it were me, getting her slides re-read is a far as I'd go in pursuing a diagnosis. I wouldn't bother with an additional biopsy - you'll know if gluten free is right once you do it. Good luck.

He said she has damage, just not as much as you normally see in a celiac biopsy. what do you mak of that? i'm really confused, because he was our second opinion.

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My daughter had her biopsy at about age 2. It came back "inconclusive". The only positive is that she had a gene for Celiacs. The short version is that someone finally said the right words to me "a pregnancy test is not inconclusive. You are either pregnant or not." Same with Celiacs. The "inconclusive" or "inbetween" result means they could not rule out Celiacs. That is usually the goal of testing. Rule it in or out. Since they could do neither, consider doing the gluten-free/CF diet for a few months. My daughter was close to 2.5 yr old when she finally did a gluten challenge. Within a week there were small changes. Then the starvation hunger went away and the poops became controlable. Finnaly an accidental glutneing and wham everything came right back with a vengance. She is a Celiac. That is all the testing I needed. She is growing, gaining weight, behavior is back to normal ranges, etc.

So I would say that you have done everything you can for a true medical diagnosis and you couldn't get one. Now try the gluten-free/CF diet for a few months. You will probably see drastic differences pretty fast if she is a Celiac. Be sure to be 100% gluten-free/CF for the challenge.

Good luck! Normally you don't hope for a disease, but I hope Celiacs is the solution to her problems. It is livable, doable, and no daily meds or side-effects.

Also, let me know if you need some food ideas or help getting started on this diet for a toddler.

Thanks. I understand about the hoping part. We've been at this since June of last year. Being told that she could possibly have serious, life threatening disorders and getting nowhere with the testing has been too much. It got to where I just wanted an answer, a name to what is wrong with her. She's so skinny and has an ethiopan belly, that she looks odd. Her skin gets yucky sometimes. She poops a lot, she won't grow. She has no appetitite. She has low muscle tone. And she is the meanest little thing sometimes. I have never seen such a strong-spirited, tantrum throwing, biting chunks of skin child! I just want to know so I can take care of her.

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Really I was in your shoes. The non-stop worrying about what is going wrong with this child followed why the Drs are not or cannot help. It is better now, but I still worry about the kids and their Celiacs and food allergies.

I view the testing as a rule it out process right now. Something is not working right for your child, just like mine. So you go to Drs to rule out diseases. You have done that. At this point, try the gluten-free/CF challenge for your child. It is one test you can do with out the Dr. Track the food and behavior and stools. Your child may have more than one health issue, but if Celiacs is an issue for your child starting the gluten-free diet will help everything else.

The problem is the babies are too young to talk and help figure it out. I have Celiacs. I was te;lling everyone she had CEliacs at 9mths! But at 2.5 yrs I finally had enough and forced it - she will be going gluten-free/CF!!!! I am stil upset that I waited that long, but I really wanted an officially diaghnosis for her. The Pediatric Gastro yelled at me!

My daughters symptoms: she did not sleep for more than a couple of hours at a time. Her stomach constantly made weird noises. She was crabby. She was constantly starving hungry. She was dropping in percentages. It got to the point that if she asked for food, she was fed no matter what time of day or night. She never handled any form of dairy. The diarrhea was HORRIBLE, non-stop, and stunk!!! Terrible rashes in the diaper no matter what I did or did not do. She also had rashes all over her legs and feet that responded to no meds. The list goes on and on.

The point is just buckle down and start the diet ASAP. You will make mistakes at first, but you will probably see improvements too.

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One of my granddaughters had terrible, blow-out diarrhea (coming out of her diaper on all sides, making a gross mess) five times a day, and had awful, horrible temper tantrums from the time she started solids.

Her other grandmother has celiac disease as well, but my daughter refused to believe that her baby had celiac disease. When finally she had her tested for intolerances, it was found that she was intolerant to all the gluten grains and all dairy.

Within days of starting the gluten-free, casein-free diet, Zoey went back to being her sweet, calm self. The temper tantrums stopped, and she had her first solid bowel movement ever.

Temper tantrums are one of the more common symptoms of celiac disease. In fact, ALL your daughter's symptoms are common celiac disease ones!

I completely agree, that you absolutely need to put Faith on the gluten-free diet. And because by now her villi will likely be in such bad shape that she won't be able to digest dairy, she needs to be dairy free as well, at least for a few months (and since soy can cause blunted villi as well, she should be soy free, too).

That poor little one has been through enough! Please just forget about doctors, and make the decision to end the torture and eliminate gluten, dairy and soy. You will likely have a 'new' child within days. It will take a few weeks for her to heal, but I bet she will grow soon, that belly will go away, and she will become sweet and even tempered.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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((HUGS))

What was the basis for her FTT diagnosis? Aside from (I'm assuming) slow or no weight gain, what are her observable symptoms? How are her skin (what do you mean by "yucky"?), stools (what do they look like, how many per day?), sleep, and behavior? Does she have reflux, or often spit up/vomit? Chronic runny nose? Dark circles under her eyes? Does she often come down with viral illnesses?

Have you noticed whether any specific foods seem to worsen her symptoms? What are her favorite foods/drinks? What foods/drinks does she dislike?

You mention duodenal ulcers, so I assume there is something awry. But what does your mommy instinct tell you? Is she a sick kid, or just a little/skinny one? How is her development (speech, motor)? What about her overall demeanor? Cheerful, active, playful? Tired, quiet, moody? Kids can be a handful when they're between 1 and 2, because their desires are bigger than their abilities, but there's also a point at which you can say, "Okay, this just isn't normal." (Oops, I see you've answered some of this in a post a few up. I'm curious to know how/if allergies have been evaluated as a possible cause...have you seen a pediatric allergist?)

When she had her biopsy, was she also evaluated for eosinophilic disorders? More info on those here: http://www.apfed.org/

Has she been tested for food and environmental allergies? If so, which types of tests? (IgE, IgG, skin testing)

She's been through so much, and I imagine that her caregivers aren't going to stop looking for a cause anytime soon. If you take her off gluten before giving them a chance to re-evaluate her for celiac, they may ask you to put her back on gluten later, which you may be reluctant to do if you've noticed significant improvement.

In your situation, I probably wouldn't put my child through another biopsy unless they screwed up and didn't evaluate her for eosinophilic disorders. HOWEVER, I'd ask for the full celiac blood testing panel to be re-drawn, and as soon as it was drawn I'd start a trial gluten-free, dairy/casein-free diet. During that trial I'd keep a full food/symptom diary with information on appetite, sleep, stools, behavior, etc. That way, if the blood panel comes back negative, but you feel going gluten-free has helped her, you'll be able to show a record of observations to her caregivers.

If blood work comes back positive, I'd simply accept that as the answer, and decline a repeat biopsy.

If it came back negative, and if our finances allowed, I'd consider ordering Enterolab testing. As a stool-based test it is non-invasive and many people here have been very happy with the information they got.

Good luck and many hugs to you and your daughter!

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He said she has damage, just not as much as you normally see in a celiac biopsy. what do you mak of that? i'm really confused, because he was our second opinion.

She had damage??? Then she has celiac. Not having as much damage as normally seen in a biopsy is a good thing - it means she doesn't have as much damage yet. Get this kid off gluten!


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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She had damage??? Then she has celiac. Not having as much damage as normally seen in a biopsy is a good thing - it means she doesn't have as much damage yet. Get this kid off gluten!

I agree with this.

Besides villi damage, there are other signs that may be visible. I would have her biopsy re-read (no new biopsy, just a second opinion on the slides). Maybe try a celiac center. Other signs include intraepithelial lymphocytes.

http://en.wikipedia.org/wiki/Intraepithelial_lymphocyte

Celiac biopsies are rated Marsh 0, Marsh 1, Marsh 2 up to Marsh 4. I was Marsh 1 but some GIs say that they don't diagnose celiac unless there is Marsh 3 or 4, which is loony. (don't you love wikipedia?) http://en.wikipedia.org/wiki/Coeliac_disease

Waiting until someone shows damage at Marsh 3 or 4 is like saying to an Alcoholic "Drink all you want until your liver fails and then we'll diagnose you as an Alcoholic."

People here have given the example that the small intestine is as big as a football field, and damage may be missed, because the biopsy samples are so small. Just because the damage isn't severe doesn't mean that your child doesn't have celiac or a problem with gluten.

Best of luck-

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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At any rate, a trial of a the gluten free diet can't hurt her any. Its perfectly nutritious. I had failure to thrive, was developmentally delayed-and now have chronic long term issues (osteo, vision problems, liver and pancreas issues, peripherial and autonomic neuropathy...)

Prior to getting a proper celiac dx, I've been diagnosed with everything but the Black Plague

Since you've been working with the Shwachman-Diamond Syndrome dx, I assume you are aware that celiac is a common casue of pancreatic insufficiency.

For example

http://www.pubmedcentral.nih.gov/articlere...i?artid=1378999

http://www.pharmaceutical-int.com/categori...sufficiency.asp

There have been 5 studies assessing pancreatic function in paediatric patients with coeliac disease using FE1.19,22,29-31 These studies (ranging from 14-46 subjects) demonstrated that pancreatic insufficiency in children with coeliac disease may be highly prevalent at diagnosis

I don't eat gluten and neither do my cats

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She's so skinny and has an ethiopan belly, that she looks odd. Her skin gets yucky sometimes. She poops a lot, she won't grow. She has no appetitite. She has low muscle tone. And she is the meanest little thing sometimes.

This was my daughter-EXACTLY. She would also cry in pain with every meal. Her blood work and biopsy was positive, but she was older, so I guess more time to do damage...??? My son had a host of symptoms but a negative blood test and negative biopsy, visually the intestine looked somewhat scalloped and mildly damaged, but the samples turned out negative. Our GI said he thinks there just wasn't enough time between the onset of symptoms and the biopsy, so the damage just isn't there yet. But rather than wait for damage, he diagnosed him with Celiac, and the almost 2 weeks he's been off gluten has changed him into a completely different child. Not so much the "terrible 2's" anymore! I thought it was just a normal thing for kids to act like that, now I feel bad :huh: Good luck, and listen to your gut instinct!


Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

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Speaking as a scientist rather than as a mom, there's simply not enough information in this thread to form any opinion as to whether or not this child has celiac disease or gluten intolerance.

The symptoms described (behavior, belly distension, skin issues, FTT, frequent stooling, low muscle tone) fit pretty darn well with celiac, but they also fit with other possibilities too.

And believe it or not, there are other conditions that mimic the damage celiac dz can cause microscopically, and many of them are not uncommon in young children with a FTT presentation. Here's a link to an article that has a brief mention of this subject: Celiac Disease: A Progress Report. Read the section at the end titled "Differential Diagnosis."

If her blood screen was positive and biopsy inconclusive, that would probably be enough for me as a parent, and quite possibly enough for me as a scientist. But the original poster said the initial celiac screen was negative. That's not at all surprising, given her age, but it leaves a lot of room for doubt.

The comment from her gastroenterologist that the biopsy was not quite normal, that there was some damage, is not enough to conclude that she should be on a gluten-free diet. In this situation, I'd want to go over the pathology report point-by-point, ideally with the gastroenterologist. I'd want to know the details and Marsh scores of each slide evaluated. Was there an increase in intraepithelial enterocytes? If yes, has H. pylori been ruled out as a possible cause? Is there increased cellularity in the lamina propia? Is there any degree of villous atrophy and/or crypt hyperplasia? If I wasn't satisfied with that conversation, I'd ask for a second pathologist to look at the slides and provide a second opinion.

Now before any of you get upset, let me make it clear that I certainly wouldn't discourage this parent from putting her child on a gluten-free diet. Heck, I recently put my own two year old on a gluten-free diet, and didn't bother to pursue diagnostics first.

But as this child is already being seen by specialists, going gluten-free without trying to get more answers first might cause friction with her caregivers. It is worth a phone conversation with the GI, at least. No one needs permission to go gluten-free, and I certainly wouldn't let a caregiver prevent me from doing what I as a parent feel is best. But in the spirit of working cooperatively with my child's medical specialists, I'd want to give them a head's up in case they would prefer to order additional testing before a dietary change is implemented.

The possibility of an eosinophilic disorder should be discussed specifically, as they are much less rare than previously thought. There's a whole subforum on eosinophilic disorders over on Kids with Food Allergies, and the small annual fee to access the forums is well worth it just for the recipe database. If she hasn't yet been tested for food allergies and/or intolerances, that's another major oversight. A trip to a pediatric allergist would be another reasonable course of action, and again, Kids with Food Allergies is a great resource for information on testing and treatment.

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Speaking as a scientist rather than as a mom, there's simply not enough information in this thread to form any opinion as to whether or not this child has celiac disease or gluten intolerance.

The symptoms described (behavior, belly distension, skin issues, FTT, frequent stooling, low muscle tone) fit pretty darn well with celiac, but they also fit with other possibilities too.

And believe it or not, there are other conditions that mimic the damage celiac dz can cause microscopically, and many of them are not uncommon in young children with a FTT presentation. Here's a link to an article that has a brief mention of this subject: Celiac Disease: A Progress Report. Read the section at the end titled "Differential Diagnosis."

If her blood screen was positive and biopsy inconclusive, that would probably be enough for me as a parent, and quite possibly enough for me as a scientist. But the original poster said the initial celiac screen was negative. That's not at all surprising, given her age, but it leaves a lot of room for doubt.

The comment from her gastroenterologist that the biopsy was not quite normal, that there was some damage, is not enough to conclude that she should be on a gluten-free diet. In this situation, I'd want to go over the pathology report point-by-point, ideally with the gastroenterologist. I'd want to know the details and Marsh scores of each slide evaluated. Was there an increase in intraepithelial enterocytes? If yes, has H. pylori been ruled out as a possible cause? Is there increased cellularity in the lamina propia? Is there any degree of villous atrophy and/or crypt hyperplasia? If I wasn't satisfied with that conversation, I'd ask for a second pathologist to look at the slides and provide a second opinion.

Now before any of you get upset, let me make it clear that I certainly wouldn't discourage this parent from putting her child on a gluten-free diet. Heck, I recently put my own two year old on a gluten-free diet, and didn't bother to pursue diagnostics first.

But as this child is already being seen by specialists, going gluten-free without trying to get more answers first might cause friction with her caregivers. It is worth a phone conversation with the GI, at least. No one needs permission to go gluten-free, and I certainly wouldn't let a caregiver prevent me from doing what I as a parent feel is best. But in the spirit of working cooperatively with my child's medical specialists, I'd want to give them a head's up in case they would prefer to order additional testing before a dietary change is implemented.

The possibility of an eosinophilic disorder should be discussed specifically, as they are much less rare than previously thought. There's a whole subforum on eosinophilic disorders over on Kids with Food Allergies, and the small annual fee to access the forums is well worth it just for the recipe database. If she hasn't yet been tested for food allergies and/or intolerances, that's another major oversight. A trip to a pediatric allergist would be another reasonable course of action, and again, Kids with Food Allergies is a great resource for information on testing and treatment.

WOW. LOL I have no idea what you are talking about. :) Alot of that was over my head, but I will tell you the limited info I know. First let me say thank you everyone for trying to helo me. I'm so confused!

She had an endoscopy due to bloody stool. They found ulcers and also decided to do the celiac biopsy while they werre in there. i would assume they checked for H. Pylori. let me describe what the 2nd GI said about her biopsy. this is verry layman's terms so forgive me. :) Apparently a normal biopsy should have nice rounded peaks. the positive biopsy looks like squared off peaks with dots around them. does this make sense? anyway, faith's biopsy was a combination of rounded peaks with squared off peaks.

So, yes her sympoms fit other things. She was already tested for CF numerous times and we are awaitng Shwachman-Diamond Syndrome tests. She was diagnosed with Pancreatic Insufficiency last year after a fecal elastase test was very abnormal. Well, last week her latest elastase was normal!!! I'm like what???? So now I took her off the enzymes she ws on, becasue I don't like medicating if not necessary. I jjust feel so confused. I've had to fight her GI just to get where we are. that's why we went to the new GI yesterday, so he was actually our second opioion about the biopsy.

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((HUGS))

What was the basis for her FTT diagnosis?

Have you noticed whether any specific foods seem to worsen her symptoms? What are her favorite foods/drinks? What foods/drinks does she dislike?

You mention duodenal ulcers, so I assume there is something awry. But what does your mommy instinct tell you? Is she a sick kid, or just a little/skinny one? How is her development (speech, motor)? What about her overall demeanor? Cheerful, active, playful? Tired, quiet, moody? Kids can be a handful when they're between 1 and 2, because their desires are bigger than their abilities, but there's also a point at which you can say, "Okay, this just isn't normal." (Oops, I see you've answered some of this in a post a few up. I'm curious to know how/if allergies have been evaluated as a possible cause...have you seen a pediatric allergist?)

When she had her biopsy, was she also evaluated for eosinophilic disorders? More info on those here: http://www.apfed.org/

Has she been tested for food and environmental allergies? If so, which types of tests? (IgE, IgG, skin testing)

Good luck and many hugs to you and your daughter!

Her FTT diagnosis cam at 12 months, she had fallen off the growth charts. She has been on enzymes since then and she's 21 months and weighs 21 pounds, whiich isn't bad. She was 18 pounds up until January.

Her demeanor goes from one mood swing to the next.

She has an allergist she sees. She has seasonal allergies and a severe egg allergy.

I don't know if she was tested for the esoinophilic disorders, I will call and ask.

Her poops range from 2 one day, to 7 the next. Some times hard, sometimes runny, sometimes normal.

Her skin has round patches like excema and she bruises easily, but her CBC's are always fine.

I think that's about it.

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. She was diagnosed with Pancreatic Insufficiency last year after a fecal elastase test was very abnormal. Well, last week her latest elastase was normal!!! I'm like what????

Diarrhea can cause a falsely low fecal elastase-the stool should be formed for the test to be really accurate. I hope you find a GI you can work with, I went through eight before I found one with a brain. :(

Here is hoping you have some answers soon!


I don't eat gluten and neither do my cats

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My daughter is only a month older and they sound like twins. We have gone round and round in circles with doctors. IF any of them said the biopsy showed damage, I would run with that. Gluten free can only help not hurt and right now the child is more important than the dx. IF she has other problems, they will still be there regardless of the diet. If it is only Celiac, then everything will clear up.

My kid has had a dramatic turn around in just 8 weeks. regardless of the negative test and drs wishes, my child is staying gluten free. Whatever the dx is, the diet has only helped.

The second gi says there was damage that relates to Celiac. Run with it.

Thanks

Stacie

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I would not let the child suffer just to pacify another doctor & another test.

Food allergies is another common sign of celiac disease. The child probably has a couple of other intolerance besides gluten that will not show up any test. But when you eliminate gluten, dairy, & soy from the diet, you will be able to pick out another problem...

just a small rant but it seems to me that our children are just tiny little guinea pigs for these doctors & scientist. & yes very telling that a scientist would put their child on a gluten-free diet without testing - which is the exact same thing that doctors would do for their own kids & family - been there seen that...

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buckeyenc5, I've been thinking about the way you're describing the situation, and I'm concerned that you aren't asking your daughter's caregivers enough questions. If they aren't giving you the information you need, you must make them continue the discussion until you are satisfied. You mention that you took her off pancreatic enzymes, but it isn't clear whether that was with our without medical advice. Was that discussed with your daughter's doctors, or did you at least inform them of your decision? Similarly, I'd be curious to know what plan of action your new GI has outlined. At least give this new doctor, who did bring the biospy to your attention, a chance to provide care to the best of his abilities. If you don't agree with his approach, fine, move on. But at least communicate with him before giving up on him.

yes very telling that a scientist would put their child on a gluten-free diet without testing

My child has multiple severe food intolerances (milk, soy, egg, and others), so it isn't at all clear if celiac will turn out to be the answer. She seems to be accumulating new intolerances (or possibly true allergies, not sure yet) over time, which doesn't necessarily fit with celiac. It fits a little better with the "atopic march." Wheat was the next major antigen to eliminate on a trial basis, but I figured why not eliminate all gluten while we're at it? And don't forget, putting her on a gluten-free diet combined with a careful food/symptom diary is a form of testing.

Most people here are pretty sure they're celiac or gluten intolerant. You already have your answer, but it is important to keep in mind that not everyone who ventures to this forum is going to have the same answer. And while Green says 97% are undiagnosed, that does not mean that everyone with suggestive symptoms is celiac. Respectfully, I know it can be hard to stay objective in a community where most, if not all, are affected by the same disease.

Another blood draw before going gluten-free, which is what I suggested, is relatively easy and not too invasive. What's so terrible about allowing the new GI a chance to help them figure this out? I'm not talking about "pacifying" a doctor. I'm talking about working cooperatively. That doesn't mean allowing the doctor to call all the shots. It means working with him to decide on the best course of action. Everyone benefits from that. I'm aware that many of the posters here have had bad experiences with caregivers, but that's not a good reason to project those experiences on others.

Not having an answer is fine when you have a 2 year old, because you get to decide what she eats. But as many of you know, even with a diagnosis it isn't so easy when you have a 9 year old who deliberately cheats, or a 12 year old who just wants to fit in, or a teenager who thinks he's invincible. Wouldn't it be better to pursue diagnostics *within reason* before going gluten-free, instead of having to deal with major health consequences later when an older child or young adult decides to go off the diet? By *within reason* I don't mean repeat the biopsy, unless they screwed up and didn't look for eosinophilic disorders. I mean repeat the bloodwork, re-test for allergies (IgG and IgE), and consider Enterolab testing if finances allow.

I think this will be my last post here. It seems as though any suggestion to stay open-minded about whether or not gluten is the problem is not welcome here, even in the pre-diagnosis stage when things like eosinophilic disorders and allergies have yet to be ruled out. That's a shame, because I think we all have the same ultimate goal ~ optimal health.

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jplain, I hope you do not leave. You just got here! :D

You've made some very good points.

We often have spirited discussions here, but I'd hope that we can respect each other's viewpoints.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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jplain, I hope you do not leave. You just got here! :D

You've made some very good points.

We often have spirited discussions here, but I'd hope that we can respect each other's viewpoints.

Yes, jplain, I was going to say the same--but Sarah got here first. ;)

One of the nice things about this board is that all viewpoints are (ideally) respected and discussion is encouraged--we don't even have a hard and fast rule about staying on topic--which leads to some very interesting discussions.

I hope you'll reconsider and give us another shot :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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My son's bloodwk and biopsy both came back negative. He had undigested food, rainbow of colors for stool, temper tantrums, mood swings, tummy aches and the list goes on. After all the tests were done, the GI gave us an antispasmadic med to stop the tummy aches. I decided at that point (she had told me that we had run all the tests and to see if this helps, we were at an ending point, he was healthy in all other ways) to put him on a gluten-free diet as my dd was already on one and he was mostly gluten-free anyway. When I did this I kept a detailed journal for 1 month. I wrote down what he ate and drank, his moods, his BM's, and his sleep patterns. During this time, all of the problems vanished, when I challenged him with gluten on two separate occaisions, they all came back. We had a follow up visit with his GI, I brought the journal with me. She said, if it works for you then do it. If it is making him feel better then that is your answer, we have done all the tests and there are no "medical reasons for it" but if it is working go for it. She said that if we wanted to revisit the idea of another round of tests to put a positive dx on it to contact her anytime or if we had any questions.

This is what worked for us, although as I said, we had already ruled out everything else. I do reccomend the food journal though, it makes it very easy to see trends or patterns that emerge without having to keep track of it in your mind.

Good luck!


Melissa

Diagnosed Fibromyalgia March 2007

Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006

Peanut allergy

Michael 3 years old diagnosed infant reflux at 6 weeks

Dairy Soy allergy until 22 months

Neg blood tests and biopsy Feb 2008

Positive gluten-free dietary response

You may have to fight a battle more than once to win it.

Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"

Toni Nolte, Overland Park, Kansas

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