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LauraW

Parents Begging Not To Do Biopsy On Dd

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I need help desperately!!! To give you a brief description of what's going on in our life. My 2 year old DD had positive bloodwork done for Celiac. She is constipated 24/7 (just started her on Miralax), only weighs 21 lbs and goes through not eating spurts. I assumed she had my stomach since I battle constiptation and have for years, however, I have had bloodwork done, and mine came back positive for Celiac. Iga 5 and IGG 17 were my results. Her ped GI has scheduled a biopsy for this Thursday and I am quite scared about this. Obviously, the risks are low, however, there are always risks under anesthesia. The dr believes she does have celiac but obviously won't know unless biopsy is done. She screams bloody murder at her drs appts and this will definitely throw her over the edge. (and me too) I hear the IV is the worst part. My parents are pleading with me to not go through with this and to get more opinions. They think I should give it 6 months or so (keep in mind I am 8 months pregnant and I am weeks away from having my second child) since she is not "techinically" sick. Why should you change her diet if she is not having diarrhea or vomiting and she is too young to be put under (keep in mind she has ear tubes...)...Oh, I have a friend that works as a NP at an adult gastro office and she ran into my mom today at the mall with my daughter and told my mom she doesn't look frail and something about her skin not looking like a celiac. She also said my results couldn't be that accurate b/c they only tested IGG and IGa, not ttg... Plus my mothers friends say I am "NUTS" for doing this to my daughter. WHAT TO DO?????????????????? :(

DD results Iga antigliagin 4

IGg 33

immunoglobin Iga 49

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That's a tough call. I went through enterolab after I had been gluten lite for 1 1/2 months (had my family tested through them). From what I understand from reading on the board....if she has positive blood work for celiac, she has celiac. I believe they are supposed to run 5 tests though, not 3. Others know much more about this than I do.

A biopsy is a personal decision. It seems like it is negative more than positive. Are they looking for anything else that could be going on or just doing a biopsy to confirm celiac? The biopsy, even if negative, will not rule out celiac. There are a lot of false negatives for biopsies. You can go through with it, get tested through enterolab, or just try the diet and see how she does. It really depends on how official of a diagnosis you want.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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The lab work is confusing for my daughter. It looks like the ttg IGa and ttg IGg are both <1, can't really read it. That doesn't seem right, b/c it would make the test negative. It might look as if the IGG antigliadin is the only positive result. The thing is, if I don't do the biopsy and she does have celiac disease, not only will we not have an answer, my family definitely won't change her diet when she stays with them, thus prolonging this constipation issue.

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My heart goes out to you, it must be so difficult to have these worries about your daughter and be pregnant too. I hope you are taking care of yourself.

Here's my thinking:

Gluten free diet - no risk.

Endoscopy - some risk.

I would and did chose a gluten free diet, what they are looking for with the endoscopy is damage and the damage has to be 3 on a scale of 4, in other words serious destruction of the villi. I would wonder that at two she could already have such damage, I'm not a doctor and really don't have a clue but people can have problems for years and years before endoscopy's actually show the problem.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Laura, my heart goes out to you!

Here is my 2 cents worth. There is no way I would let anyone perform a risky procedure on my children unless it was DAMN necessary. (pardon my French.) My oldest son had open-heart surgery (which he definietly needed)at age 2, and had MAJOR developmental regression as direct result. Now, I know endoscopies are nothing close to open-heart surgery, but once you've seen your child hooked up to tubes and machines, and once you weigh the risks against the benefits, you think twice when it's not a necessary surgery.

So, who determines whether an endoscopy is necessary? Well, in your case, the doctor does not seem to be convinced by the bloodwork. Only problem is, the villi in the intestine don't necessary flatten in perfect unison, so an endoscopy will only tell you about the part or parts he biopsies. And a negative biopsy does not rule out the possiblity that gluten is harming your child, it only tells you that, so far, her villi are okay. That doesn't mean that they are not on their way to being destroyed! Also, my understanding is (and someone please correct me if I'm wrong) autoimmune disorders are almost certain to develop in someone with positive celiac bloodwork. There are false negatives, especially in children, but no false positives.

Many of us here on the board had adult-onset symptoms of celiac.

I vote strongly for trying a gluten-free diet and seeing if that has any effect. You have nothing to lose, you don't risk your child's life. If you opt for an endoscopy, all you are doing that I can see is satisfying your doctor's curiosity and padding his bank account. He's not looking for anything else other than celiac, is he?

And you have to go on the gluten-free diet for yourself anyway, so it's easier if the whole house is gluten-free. I'm sorry if I am coming on strong, but I know first-hand a little about the risks of peds surgery--and the doctors are not up-front about how high the risks are. If the risks of a child dying on the table are 1 in 100, and they are performing this surgery hundreds of times a year--well, you do the math.

We read about children dying during relatively routine procedures such as having ear tubes placed. My son had major problems after his surgery, and we were never told that developmental regression was even a risk!

Please, don't go there unless you HAVE to.

Oh--did anybody suggest "stone" fruits for the constipation? My daughter was terribly constipated when we first started solid food, and we were told to give her peaches, pears, plums, nectarines, mangoes, etc. They helped ENORMOUSLY. We downplayed bananas, and didn't do rice cereal , applesauce, or potatoes or sweet potatoes at all. We also did a lot of salmon--very high in omega 3 and omega 6 fatty acids--very very very healthy and easy to digest!

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I need help desperately!!! To give you a brief description of what's going on in our life. My 2 year old DD had positive bloodwork done for Celiac. She is constipated 24/7 (just started her on Miralax), only weighs 21 lbs and goes through not eating spurts. I assumed she had my stomach since I battle constiptation and have for years, however, I have had bloodwork done, and mine came back positive for Celiac. Iga 5 and IGG 17 were my results. Her ped GI has scheduled a biopsy for this Thursday and I am quite scared about this. Obviously, the risks are low, however, there are always risks under anesthesia. The dr believes she does have celiac but obviously won't know unless biopsy is done. She screams bloody murder at her drs appts and this will definitely throw her over the edge. (and me too) I hear the IV is the worst part. My parents are pleading with me to not go through with this and to get more opinions. They think I should give it 6 months or so (keep in mind I am 8 months pregnant and I am weeks away from having my second child) since she is not "techinically" sick. Why should you change her diet if she is not having diarrhea or vomiting and she is too young to be put under (keep in mind she has ear tubes...)...Oh, I have a friend that works as a NP at an adult gastro office and she ran into my mom today at the mall with my daughter and told my mom she doesn't look frail and something about her skin not looking like a celiac. She also said my results couldn't be that accurate b/c they only tested IGG and IGa, not ttg... Plus my mothers friends say I am "NUTS" for doing this to my daughter. WHAT TO DO?????????????????? :(

DD results Iga antigliagin 4

IGg 33

immunoglobin Iga 49

From your point of view what is the main issue here?

1. Offending or disagreeing with your parents or the doctor?

2. Needing a "more" official diagnosis than the blood test for your piece of mind?

3. Doing whatever you can to make your daughter feel well as soon as possible?

If your daughter could vote what do you think she would want to do next? The diet does not cost anything to try and if it does work that in itself is a positive diagnosis. Convincing family members or medical personel can be done later. You say she is constipated and goes through not eating spruts. Sounds like something is wrong with her. Why should someone have to continue to suffer just so everyone else is satisified first. Do you think you could successfully exclude gluten from her diet long enough to see if it makes a difference? If so get started today. Hope this helps.

Tom

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First of all, welcome to the board! I think it's probably normal for you to be questioning the necessity of having this procedure done. After all, she did have positive bloodwork. If this were my child, I think I would order the Enterolab tests and go from there. The Enterolab testing should be enough to convince your family AND it will give you piece of mind that you're doing the right thing by keeping her gluten free. Keep in mind that starting her on the gluten-free diet at this age will likely be MUCH easier than it would be if you waited. I agree with the others, since you're going gluten free it will be easiest for her to be gluten free at home anyway. Our household is completely gluten free even though I am the only diagnosed Celiac.


~Angie~

Gluten free since May 2004

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First of all, welcome to the board! I think it's probably normal for you to be questioning the necessity of having this procedure done. After all, she did have positive bloodwork. If this were my child, I think I would order the Enterolab tests and go from there. The Enterolab testing should be enough to convince your family AND it will give you piece of mind that you're doing the right thing by keeping her gluten free. Keep in mind that starting her on the gluten-free diet at this age will likely be MUCH easier than it would be if you waited. I agree with the others, since you're going gluten free it will be easiest for her to be gluten free at home anyway. Our household is completely gluten free even though I am the only diagnosed Celiac.

Thank you all for your replies and overwhelming support. It is making such a difficult decision a little easier. I think I will order the enterolab tests for myself and my daughter. Does anyone know, do I need a referral from our doctors or does insurance cover this? I am curious, my tests and my DD came through labcorp, is enterolab the way to go for celiac????

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Thank you all for your replies and overwhelming support. It is making such a difficult decision a little easier. I think I will order the enterolab tests for myself and my daughter. Does anyone know, do I need a referral from our doctors or does insurance cover this? I am curious, my tests and my DD came through labcorp, is enterolab the way to go for celiac????

You order the tests from Enterolab yourself--www.enterolab.com. You don't need a doctor's prescription or referral.

You'd have to check with your insurance company to see if they would cover it. Mine would not, because it wasn't ordered by a doctor. I have seen a few people here who did get it covered, so it would pay to check.


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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Laura, my heart goes out to you!

Here is my 2 cents worth. There is no way I would let anyone perform a risky procedure on my children unless it was DAMN necessary. (pardon my French.) My oldest son had open-heart surgery (which he definietly needed)at age 2, and had MAJOR developmental regression as direct result. Now, I know endoscopies are nothing close to open-heart surgery, but once you've seen your child hooked up to tubes and machines, and once you weigh the risks against the benefits, you think twice when it's not a necessary surgery.

So, who determines whether an endoscopy is necessary? Well, in your case, the doctor does not seem to be convinced by the bloodwork. Only problem is, the villi in the intestine don't necessary flatten in perfect unison, so an endoscopy will only tell you about the part or parts he biopsies. And a negative biopsy does not rule out the possiblity that gluten is harming your child, it only tells you that, so far, her villi are okay. That doesn't mean that they are not on their way to being destroyed! Also, my understanding is (and someone please correct me if I'm wrong) autoimmune disorders are almost certain to develop in someone with positive celiac bloodwork. There are false negatives, especially in children, but no false positives.

Many of us here on the board had adult-onset symptoms of celiac.

I vote strongly for trying a gluten-free diet and seeing if that has any effect. You have nothing to lose, you don't risk your child's life. If you opt for an endoscopy, all you are doing that I can see is satisfying your doctor's curiosity and padding his bank account. He's not looking for anything else other than celiac, is he?

And you have to go on the gluten-free diet for yourself anyway, so it's easier if the whole house is gluten-free. I'm sorry if I am coming on strong, but I know first-hand a little about the risks of peds surgery--and the doctors are not up-front about how high the risks are. If the risks of a child dying on the table are 1 in 100, and they are performing this surgery hundreds of times a year--well, you do the math.

We read about children dying during relatively routine procedures such as having ear tubes placed. My son had major problems after his surgery, and we were never told that developmental regression was even a risk!

Please, don't go there unless you HAVE to.

Oh--did anybody suggest "stone" fruits for the constipation? My daughter was terribly constipated when we first started solid food, and we were told to give her peaches, pears, plums, nectarines, mangoes, etc. They helped ENORMOUSLY. We downplayed bananas, and didn't do rice cereal , applesauce, or potatoes or sweet potatoes at all. We also did a lot of salmon--very high in omega 3 and omega 6 fatty acids--very very very healthy and easy to digest!

Well, we have tried apples but not peaches or pears or plums. Apple juice used to work and now, the only thing that works is Miralax. Thank you for your post, it was a real eye opener. Can you imagine if something went wrong during a routine procedure? I would never forgive myself. I know that my family thinks this is all ridiculous, but you don't want to give your child food that is dangerous for their digestive tract.

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Guest nini

my daughter's bloodwork wasn't even positive, but because my bloodwork was positive we decided to try the diet to see if it helped. What a difference it made and NO RISK. I don't give a flying flip what any Dr. or grandparent thinks, it's what you the parent decide to do. If you want to skip the biopsy then don't do the biopsy. Neither my daughter nor myself had the biopsy, and after speaking with several renowned Celiac experts (Nationally recognized gastroenterologists that are Celiac experts) they also agreed that positive dietary response was more than sufficient to dx gluten intolerance (no difference between gluten intolerance and Celiac... just proof of flattened villi which is only addressing the gastrointestinal aspects of gluten intolerance and not the neurological or dermatologic aspects)

According to the experts I've spoken with ANY even borderline positive test result when screening for Celiac is enough to suspect gluten intolerance and it's much simpler (and less risky and less expensive) to confirm it with dietary response. Positive dietary response is THE MOST VALID diagnostic tool.

Why would you change your daughters diet when she doesn't have vomiting or diarrhea? Because she has constipation and just as many Celiacs manifest with constipation as those with diarrhea. Some Celiacs have no visible symptoms at all and only find out because of blood work finding the antibodies for it. And yes even one positive test out of 3 or 5 is enough to suspect gluten intolerance and if the patient responds to the diet that right there is proof positive.

My personal opinion for what it's worth is that the biopsy is risky and unnecessary.even slightly positive Blood work is enough reason to try the diet. And really the diet aint that bad.

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Well, we have tried apples but not peaches or pears or plums. Apple juice used to work and now, the only thing that works is Miralax. Thank you for your post, it was a real eye opener. Can you imagine if something went wrong during a routine procedure? I would never forgive myself. I know that my family thinks this is all ridiculous, but you don't want to give your child food that is dangerous for their digestive tract.

We had very bad luck with both apples and apple juice. We ended up never giving her juice. (Hope that helps!) I'm sorry that all my posts are so short and brusque, I just wanted to make sure I answered you as quickly as possible (never enough TIME when you have little ones!!!).

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It comes down to what YOU think is best. If you want her on a gluten-free diet and your parents won't comply when she's there, that's awfully presumptive and disrespectful of them, and she doesn't need to stay with them. She's on gluten right now, and if you need the biopsy to keep her on the diet, then get it done and out of the way, but if she's positive on the blood tests AND you're positive, then there's not a good reason, IMHO. In the end, though, it's 100% your choice. You don't need the biopsy to do the diet, but you do need gluten to do the biopsy.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Just from the other side of the fence....

I am very happy that I got the biopsy. I know that I would have doubted the diagnosis otherwise (heck, I doubted it even with the positive biopsy!). Now I have a definitive answer. Also, for insurance purposes, it helps to have a solid diagnosis with what is still called the "gold standard" in diagnosing Celiac disease.

That said, I agree with others that it's a personal decision, and I don't think that those who forgo the biopsy are "wrong" by any means. I just wanted to offer a different opinion for your consideration.

Good luck, and keep us posted

- Lauren

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Just from the other side of the fence....

I am very happy that I got the biopsy. I know that I would have doubted the diagnosis otherwise (heck, I doubted it even with the positive biopsy!). Now I have a definitive answer. Also, for insurance purposes, it helps to have a solid diagnosis with what is still called the "gold standard" in diagnosing Celiac disease.

That said, I agree with others that it's a personal decision, and I don't think that those who forgo the biopsy are "wrong" by any means. I just wanted to offer a different opinion for your consideration.

Good luck, and keep us posted

- Lauren

Thanks Lauren,

I am going back and forth, but need to make up my mind since it is scheduled for Thursday. Did you have the biopsy or your child. I tested positive and I will definitely do the biopsy after I deliver, it's my 2 year old daughter that scares me. And it's not the actual biopsy, it's the whole anesthesia thing and the I.V... The good thing about the biopsy is I can feel like the diagnosis is more certain, if you know what I mean. Did you do the enterolab tests?

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Enterolab is more sensitive than the blood tests, which is why I used it. I was already gluten-free, so my blood work was negative. I did an insufficient gluten challenge, and my biopsy was also negative. I didn't want to go on gluten longer as my doctor suggested, so I used Enterolab.

If your blood work and your daughter's blood work were both positive, I would just try the diet. Enterolab will show the same thing -- positive. I would just try the diet and see what the dietary reponse is. One daughter's only symptom is a learning disability that is getting better this year now that she's off gluten, my other daughter's only symptom is seasonal allergies. I have "classic celiac" symptoms myself, plus others since I was sick for so long.

If you feel the biopsy is necessary for your own peace of mind to have a firm diagnosis, then do it as you will not want her to go back onto gluten for it later if she improves on the diet.

There is no easy answer for this. All I can say is what I'd do -- I'd consider positive blood work to be a positive diagnosis because there are no false positives ... all the biopsy can show is how much damage there is ... the blood work shows a reaction to gluten which will more than likely cause damage at some point in time if it's not already there. Plus, the biopsy can only prove you have it, it cannot rule it out because of the high rate of false negatives.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Guest nini

also with a biopsy as gold standard diagnosis for insurance purposes rationale, keep in mind that with a positive dx of Celiac on your medical records (whether by blood alone or biopsy) you can be denied health insurance coverage (yep, it happened to me)

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also with a biopsy as gold standard diagnosis for insurance purposes rationale, keep in mind that with a positive dx of Celiac on your medical records (whether by blood alone or biopsy) you can be denied health insurance coverage (yep, it happened to me)

Holy Crap!!! You are kidding me. Now I really going to go throw up!!!! You were denied insurance coverage? What happened?

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I think that that the choice is yours....but with a positive blood test, I personally don't see the point. If the biopsy came back "negative", the simple fact remains that it won't negate the results of the blood work. And the whole line of conversation as to your dd's skin not "looking like a Celiac"...WTH??? Who in their right mind would want their kids to get so sick that they "look" THAT sick? (Not a judgement on your part....but rather a question of that nurse's comment). What a strange way of prioritizing things. So by that nurse's standard, a person with multiple cuts and bruises should be treated before someone who potentially has massive internal injuries....based on outward appearance of the skin?

It sounds like your decision is really being complicated by outside forces who don't know anything about the seriousness of this disorder and who are making this thing all about THEM instead of being rational adults and realizing that it's really all about your DD! Biopsy or no...you will run into these people every day....because most of us are lucky enough to have them as immediate family members! Even with a biopsy-proven case of Celiac, I can pretty much promise you that once or twice a month, you will have someone telling you that the diet is a bunch of "junk science", that you're being "mean" to implement such a strict diet, that you need a second, third or fourth opinion, that cheating here and there can't hurt any.....the list is virtually endless. It's very easy to get frustrated and to lose focus on what's important. Ultimately, to me, the question boiled down to, "If my dd had a choice, what would she feel was in her best interest?". My dd also developed that huge fear of doctors due to all the tests. Even with a negative blood test, we opted out of the biopsy and just tried the diet. The results were nothing short of miraculous (and my dd "looked" healthy too....despite being underweight). I don't regret plunging into the diet. And if ever I get "down", I just come to this board and read people's signature lines which often tell you how LONG they suffered with this disorder or I go visit the Doctors section of the board as the horror stories there keep a person VERY motivated to continue with what really works. At some point, you have to rely on what your gut instincts tell you as well as first-hand observation from your own two eyes. Those skills can only be honed by seeing what the diet can do.

Also, not to get off topic, but could someone explain this to me as far as what the benefit is for insurance purposes? Are we talking about actual insurance companies/coverage of the tests or am I misreading that (which is TOTALLY possible as I am so tired right now)? Or perhaps are we talking about having a straight forward diagnosis as far as providing the school with accurate information and that acting as some sort of "insurance" that they'll be more open to adapting classes around the child's condition? I'm just wondering if I am missing out on something important here... :unsure: I can understand the fear of not staying motivated to stick to a strict gluten-free diet without a formal diagnosis (we're all affected by the news differently). But I didn't quite "get" how insurance played a role. Most stories I read were of people being denied insurance if they went to apply for a new plan due to their "pre-exising conditions". Can someone help me understand that?

I am very happy that I got the biopsy. I know that I would have doubted the diagnosis otherwise (heck, I doubted it even with the positive biopsy!). Now I have a definitive answer. Also, for insurance purposes, it helps to have a solid diagnosis with what is still called the "gold standard" in diagnosing Celiac disease.

Vicky

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Guest nini
Holy Crap!!! You are kidding me. Now I really going to go throw up!!!! You were denied insurance coverage? What happened?

I had been covered under a group plan at work before my dx, then business went south and he couldn't cover our insurance anymore, so I was forced to start shopping for insurance. EVERY COMPANY that I called pulled up my health record after my initial application was put in and they all said that I couldn't be insured. The only way I was able to get insurance was to go back to the company that my boss had been paying for and "transfer" my plan from a group to a family plan and have my husband go on it as "head of household" so that I didn't have to submit to the medical exams and review of medical records. Also, this particular company since they had insured me prior to my dx and then after, they could tell that this dx actually SAVES them money. The other companies that I called were all up in arms about anyone with Celiac is HIGH RISK and uninisurable. Then when I lost my job we lost that insurance so now I'm classified as uninsurable. TG for medicaid.

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Thanks Lauren,

I am going back and forth, but need to make up my mind since it is scheduled for Thursday. Did you have the biopsy or your child. I tested positive and I will definitely do the biopsy after I deliver, it's my 2 year old daughter that scares me. And it's not the actual biopsy, it's the whole anesthesia thing and the I.V... The good thing about the biopsy is I can feel like the diagnosis is more certain, if you know what I mean. Did you do the enterolab tests?

Laura,

I had the biopsy myself. I just realized that my picture may be misleading - that's me with my baby cousin!

If I had a child, of course it may be a different story. I can understand how you feel conflicted about the whole anesthesia/IV process. For me, it was no big deal, but of course I was 21 years old when I had it done.

I did not go through enterolab, so have nothing to share with that experience. As I said, I am glad that I had the biopsy, but apparently false negative biopsies are more common (especially if your daughter has not been eating much gluten, or eating much, period) than false positive bloodwork. So unless the biopsy comes back positive, you would still be left with questions.

I know exactly what you mean about a more certain diagnosis. It's a tough decision, and I wish you the best of luck with it.

- Lauren

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Aaaahh, the joys of being a parent, eh? The difficult decisions we have to make for their benefit. It's a good thing they make it worth it by bringing us so much joy!!!! ;)

Here's my 2 cents (worth a bit more these days as the Cdn dollar is higher..... lol)

More and more, the biopsy is being overlooked as the "gold standard" and a positive dietary response is being accepted more and more as a definitive answer. There are a few reasons for this:

1) Picture this: There is a person standing in front of you with a blotchy, patchy rash all over their back. Now you are supposed to put on a blindfold and take some biopsies of that back. It is basically hit or miss as to whether you are going to hit the rashy part, right? You have just as much chance picking a spot that is normal. It is exactly the same thing with the endoscopy and biospy. The villi damage is quite often "patchy", and sure, if he hit a damaged part, bingo! she's positive, but if he hits a part that's not damaged, the results will come back negative, but that certainly doesn't mean there isn't damage in there, he just missed it. That is why you can't have a wrong positive, but you certainly can have a wrong negative.

2) Example: There are many people that have elevated bloodwork, but not enough time has elapsed for damage to occur to the villi, at least enough to register on a biopsy. Therefore, the result will come back negative, but truly, your daughter really does have celiac, and since you decided not to go the gluten-free route because of the negative results of the biopsy and your child continues to consume gluten, damage will continue to be occuring without you knowing it and five years down the road, when her symptoms all of a sudden become significant, and you find out it's been celiac all along, you will be kicking yourself wondering why you didn't follow your instincts at the beginning......

Just more food (gluten-free, of course!) for thought.......

Oh, thought I would mention this also. My second daughter Rhiannon had chronic constipation from birth through to age 4. They tested her for everything under the sun (negative for celiac). They even tested her for Hirschprung's (can't remember how to spell it!) Ultimately, her pediatrician started her on a teaspoon of liquid Senekot every night. We had to adjust the dosage slightly to get her bm's just right, but once we found the right amount, she was on that for over one year. Her pediatrician assured us that since it was all natural, it was okay for her to use long term. Just after age four, we decided to wean her off of it to see how well she did on her own, and she passed with flying colours!!! No lasting effects and totally normal bm's since she was four, and she's 8 now....... Perhaps discuss this with her doctor..... We had gone the whole nine yards with every single possible remedy and medication before Senekot finally restored our sanity!

Good Luck!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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You will have to decide what you can live with ~ but I did want to add that between the age of 9 and 13 my son has had FOUR scopes and one surgery, and all of them went perfectly fine. The anesthesia is very safe, and not the deep sedation we imagine as adults. The IV is put in after your child is asleep (they'll put them out with a mask) and taken out once they are in recovery. Yes, there can be thrashing and disorientation. Yes, it's all very scary. But sooner or later, for one reason or another, you will find yourself in the position of having to suck it up and be the calm adult for your child. Try not to think about what you imagine it will be like, or what you are afraid of. Figure out what the best choice is, apart from your emotions about it all. Ask a million questions if you have to! Get facts from your doctors. Get better doctors, if you don't like the answers (ours is 220 miles away!)

All that being said, my son was dx via bloodwork and biopsy; my DH was dx via iffy bloodwork and very positive dietary response. No problems with insurance, either...

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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Hi there. My 2 yr old daughter had this in Julyof this year. It wasn't too bad they actually put the IV in after she was asleep. Just make sure to tell the Anesthesiologist if there are any reactions to it in the family,I know they willa sk anyway. But she did great. That is the only 100% way to tell and shows if anything else is going on to. They also found out that nicole has gastritis and esophagitis. And put her on prevacid and she has been on miralax for the same constipation and she is a totally different happier kid. It was like night and day with the diet and prevacid. Just remember if you give it time on the diet before the biopsy then do it it can alter the results,they have to be eating luten for it to show up. And if you do that then put her back on gluten she may get really sick after not having it. But it is your decision.

I hope all goes well. And congrats on you new baby to come. I hope she feels better soon.


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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