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This Diagnosis Process Is Maddening!


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#1 Mom-of-Two

 
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Posted 08 July 2012 - 07:30 PM

This entire process sucks. Really. I have posted before about having my 7 year old do the biopsy, etc- long story short, I have been gluten free 5 months after finding out I have celliac, had both our kids tested because of the genetics. My oldest came back with high ttg at 78.20 (normal <20) and the GI did not test her for EMA at that time. Sent her for endoscopy, which was totally normal, absolutely nothing abnormal at all.

He advised we leave her on normal diet and re-test in 6 months, suggesting "latent" celiac. I was not pleased with this advice or his general bedside manner, so we took ourselves to a second opinion at the Cleveland Clinic where I am seen, to another pediatric GI that specializes in celiac. He has us testing her EMA, checking her Vitamin D and iron levels, and also the gene test- which I called about and is covered by our insurance in this circumstance. He feels that all of these markers combined, even with normal biopsy, will give us more answers. He does not diagnose children with positive bloodwork and normal biopsies in the majority of cases he says, but because 1) I have celiac 2) her labs are abnormal and 3) she has unexplained joint pain, he feels what is the most likely is that her damage was not there YET, or was missed or patchy which we all know is common in children. The biopsy was on 6 samples- and the pathology dept is excellent, however he did have me sign a request and he is getting the slides to re-examine just to cover all bases and make sure his pathology dept doesn't see anything at all that could be suggestive.

We know we have a diagnosis either way, but know it's a long road and lifetime comittment, having a definitive answer would just be so amazing!!
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#2 Mom2J112903

 
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Posted 09 July 2012 - 05:17 AM

When testing does not agree with clinical symptoms, in this case gluten-free = symptoms gone, why is formal testing needed IMHO.
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#3 StephanieL

 
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Posted 09 July 2012 - 05:54 AM

When testing does not agree with clinical symptoms, in this case gluten-free = symptoms gone, why is formal testing needed IMHO.



Because if the child needs accommodations in school, a formal dx is needed. Also, many people need it to maintain gluten-free for LIFE.

OP, I am in the Cleveland area. Do you mind PMing me who your Dr is? We are in the midst of trying to find a new one. Thanks.
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#4 Mom2J112903

 
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Posted 09 July 2012 - 06:10 AM

Because if the child needs accommodations in school, a formal dx is needed. Also, many people need it to maintain gluten-free for LIFE.

OP, I am in the Cleveland area. Do you mind PMing me who your Dr is? We are in the midst of trying to find a new one. Thanks.



My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?
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Crystal, Stay-at-home and homeschooling Momma to a one and only little warrior man with numerous GI disorders which have lead to Elecare Jr via g-tube as soul nutrition.

#5 StephanieL

 
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Posted 09 July 2012 - 06:42 AM

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?



You are kidding me, right? Why are you yelling at me about why some people feel the need to have a formal dx? What you do with your kid is your business, I was just answering your question as to why some people need/want a formal dx. Your comment doesn't even make sense, yes if you have Celiac why would you eat gluten but the OP said there isn't a formal dx so why would they NOT eat gluten again?

Also for accommodations in schools (re: a 504 plan which legally requires schools to do things for a child) a formal dx. is needed. You may not have needed such for your school but there are others who do and this is why it's needed.

Please, before yelling at others for being rude, maybe check your post before hitting reply!
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#6 kareng

 
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Posted 09 July 2012 - 06:50 AM

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?


I didnt find that comment rude at all. She was just answering a question of why someone might need a formal piece of paper.
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“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
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#7 kareng

 
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Posted 09 July 2012 - 06:57 AM

This entire process sucks. Really. I have posted before about having my 7 year old do the biopsy, etc- long story short, I have been gluten free 5 months after finding out I have celliac, had both our kids tested because of the genetics. My oldest came back with high ttg at 78.20 (normal <20) and the GI did not test her for EMA at that time. Sent her for endoscopy, which was totally normal, absolutely nothing abnormal at all.

He advised we leave her on normal diet and re-test in 6 months, suggesting "latent" celiac. I was not pleased with this advice or his general bedside manner, so we took ourselves to a second opinion at the Cleveland Clinic where I am seen, to another pediatric GI that specializes in celiac. He has us testing her EMA, checking her Vitamin D and iron levels, and also the gene test- which I called about and is covered by our insurance in this circumstance. He feels that all of these markers combined, even with normal biopsy, will give us more answers. He does not diagnose children with positive bloodwork and normal biopsies in the majority of cases he says, but because 1) I have celiac 2) her labs are abnormal and 3) she has unexplained joint pain, he feels what is the most likely is that her damage was not there YET, or was missed or patchy which we all know is common in children. The biopsy was on 6 samples- and the pathology dept is excellent, however he did have me sign a request and he is getting the slides to re-examine just to cover all bases and make sure his pathology dept doesn't see anything at all that could be suggestive.

We know we have a diagnosis either way, but know it's a long road and lifetime comittment, having a definitive answer would just be so amazing!!


Now, back to the original poster....

It sounds like you have a diagnosis or are about to have one. From what you are saying, he is taking in to consideration many factors, not just one, to diagnose the child. If you see good progress with the diet, you will know for certain. Ask him to put the diagnosis in writing for you incase you need it for schools, college dorms, airplanes, camps, etc.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#8 MitziG

 
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Posted 09 July 2012 - 06:59 AM

I think this is a simple misunderstanding and a case of inferring tone to text, which is difficult to do correctly. Mom2J112903 read FOR LIFE as being kind of "snotty" even though it wasn't intended that way. You were emphasizing that if a person is going to undertake a lifelong diet they want to be sure that it is necessary.

Mom211j2903, maybe re-read the post a second time before posting. I am guilty of a few posts that were not accurate responses due to my mis-reading the OP's post as well. Let's try to remember this is a support group though, and always be respectful and polite. I have noticed a lot of sarcasm in a few other posts and it is likely to make the poster on the receiving end reluctant to post again.
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#9 Mom-of-Two

 
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Posted 09 July 2012 - 07:32 AM

I did not find the comment rude- and I agree, I would prefer a formal diagnosis for school and other accomodations down the road. She attends a private school and we don't need anything official, we just coordinate with classrom teacher and send her safe lunches, parties are coordinated, etc. But I would just like to have a diagnosis with more than her one abnormal test, that's all. Because I am celiac myself, I know how hard it is and just want to be sure we have all our ducks in a row :)

We are lucky that she is willing to do the diet happily and enjoys much of the things we have introduced, and didn't mind giving the other stuff up. She is healthy now, which is our main concern, why allow her to be more damaged when we can fix it now by gluten free diet. The only reason I have been holding off removing it completely was in case this new GI wanted to do further testing, she will have the EMA and gene test done this week and in the mean time, will be moving toward total gluten free diet.

It is just irritating, you don't want doubt when it comes to your kids, you want a definitive answer, and because she does not have GI symptoms, it makes it harder to "try the gluten-free diet and have your answer". My own celiac dr feels the ttg is enough, and her joint pain is probably going to resolve gluten free (I hope!).
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#10 kareng

 
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Posted 09 July 2012 - 07:46 AM

I did not find the comment rude- and I agree, I would prefer a formal diagnosis for school and other accomodations down the road. She attends a private school and we don't need anything official, we just coordinate with classrom teacher and send her safe lunches, parties are coordinated, etc. But I would just like to have a diagnosis with more than her one abnormal test, that's all. Because I am celiac myself, I know how hard it is and just want to be sure we have all our ducks in a row :)

We are lucky that she is willing to do the diet happily and enjoys much of the things we have introduced, and didn't mind giving the other stuff up. She is healthy now, which is our main concern, why allow her to be more damaged when we can fix it now by gluten free diet. The only reason I have been holding off removing it completely was in case this new GI wanted to do further testing, she will have the EMA and gene test done this week and in the mean time, will be moving toward total gluten free diet.

It is just irritating, you don't want doubt when it comes to your kids, you want a definitive answer, and because she does not have GI symptoms, it makes it harder to "try the gluten-free diet and have your answer". My own celiac dr feels the ttg is enough, and her joint pain is probably going to resolve gluten free (I hope!).


Actually, trying the gluten-free diet may give you an answer, combined with the other tests. If the joint pain goes away, if her tTG goes down in 6 months or a year, that would be one or 2 more things to give her an official diagnosis.

It is very easy for small intestine biopsies to miss the damage. I think that was one of the things the doctor told you. An adult has something like 16-20 feet of small intestine. If 25% were damaged, seems it would be easy to miss it with 6 tiny biopsies.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#11 StephanieL

 
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Posted 09 July 2012 - 07:47 AM

:( I know! My DS was completely asymptomatic. Biopsy was inconclusive. Only off blood work. After a few months of thinking about it DS went gluten-free. tTG's came down from 120 to 48 in 6 months. That was enough of this Dr's (he also had + genetics on both genes).

I still question his dx so I totally get what you are feeling. Why isn't it just a yes or no thing!
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#12 Lfrost

 
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Posted 09 July 2012 - 07:50 AM

Let's try to remember this is a support group though, and always be respectful and polite. I have noticed a lot of sarcasm in a few other posts and it is likely to make the poster on the receiving end reluctant to post again.

:) :) :)

It is just irritating, you don't want doubt when it comes to your kids, you want a definitive answer, and because she does not have GI symptoms, it makes it harder to "try the gluten-free diet and have your answer". My own celiac dr feels the ttg is enough, and her joint pain is probably going to resolve gluten free (I hope!).

I completely agree. We stopped testing after a negative blood test for celiac, but positive for allergies. I hate the doubt in the back of my mind that we should have done a biopsy or continued with possible Celiac. My son's reactions and symptoms make me question each day if there isn't something more to this than allergies. Even though the response would be the same (gluten free) I can't help but wonder. I also now look at my older children and wonder, could that be gluten related? But without a positive celiac diagnosis I wonder if I am being a hypochondriac.

My bloodwork was also negative, but I still smoke. The reason I smoke was because when I quit I got UNBEARABLE canker sores all over my mouth. At one time I could have over 30. One even ulcerated to the bone on my gums. My doctor and dentist were both baffled. The only thing that worked was to start smoking again. Could I have put Celiac/ NCGI into remission? I have read that smoking can put it off.....who knows.

Celiac is such a tricky, tricky thing! And I will always question at the back of my mind.
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#13 Mom-of-Two

 
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Posted 09 July 2012 - 10:51 AM

Exactly. Well said, I will be the type of person with that nagging what if in the back of my mind---- making her gluten free is not a problem, and she is accepting of it at almost 8 years old, very willing and fine with the changes that are happening. Great attitude. The point is, I know how careful I need to be, eating out, cross contamination, etc so I just feel as though it's necessary to KNOW for absolute certain she has celiac disease. I have done TONS of research and feel that the ttg test is very accurate for a diagnosis, combined with her genetic history since I have it myself. However I doubt myself when I hear a GI dr tell me (an experienced one) that I should keep her on gluten and re-check her in 6 months because high ttg can mean other autoimmune diseases....we actually had her tested 18 months ago for juvenille arthritis because of her joint pain (negative). She is very healthy and has no signs of other illness, only goes to the pediatrician once a year for checkup! Like I said, he said he will check her EMA and the genetic testing, as well as vitamin deficiency just to give us more info to go on.
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#14 psawyer

 
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Posted 09 July 2012 - 05:15 PM

Because if the child needs accommodations in school, a formal dx is needed.


My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds. I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?

Not rude at all, as I see it.

Perhaps Stephanie should have said, "a formal dx is often needed. There are plenty of stories here about people who did not have the official written document being refused accommodation by schools, universities, hospitals, care facilities, etc. She was not rude, she was addressing an issue that so many of us have witnessed. Your experience with your Catholic school system is the exception, not the norm.

If your son ever needs to justify his need under the ADA for reasonable accommodations, at any time during his life, your word won't be enough.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#15 Takala

 
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Posted 09 July 2012 - 06:26 PM

Lfrost,

Smoking tobacco does, for some, suppress celiac symptoms.
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