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Latest Adventure With Ped Gi


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#1 kvanrens1

 
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Posted 11 October 2012 - 08:14 AM

According to celiac blood test (not complete panel) 4 years ago and negative endoscopy biopsy results last September, my daughter does not have celiac disease. After being in pain for years and having "unexplained" failure to thrive, growth hormone deficiency, pancreatic insufficiency, chronic gastritis, mouth ulcers, constipation, etc., we put her on a gluten free diet in March after Enterolab results indicated gluten sensitivity. The change in how she feels, looks, etc. has been phenomenal.

I don't want to make this post too long but we switched back to our original Ped GI doc and he was not the one who scoped her. He has suggested that we put her back on gluten and rescope to see if she does indeed have celiac disease.

She has been through so many tests (cystic fibrosis, h.pylori, growth hormone tests, gi endoscopy, MRIs of head and stomach, etc.) that I don't want to put her through a gluten challenge and another scope. A couple of times that she has gotten glutened over the past six months, the pain has been horrible for her (crying for hours). I feel like she is starting to "heal" and adjusting to a gluten free way of life so why put her though this process again. I said no to a rescope. Am I wrong?

By the way, since going gluten free her pancreatic insufficiency test has come back normal, constipation is no longer an issue, and no mouth ulcers. Her stomach aches have gone from 5-6 per week to an occasional stomach ache. I feel like we have our answer but it seems like since I figured it out when the doctors could not, they seem less inclined to believe it. Why can't her positive response to gluten free diet be enough?
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Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


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#2 mushroom

 
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Posted 11 October 2012 - 08:29 AM

If you were to sentence someone in a court of law to eat gluten when they do not tolerate it, I believe that would be classified as cruel and unusual punishment. And yet that is what your doctor is proposing for your little girl. How many chances do doctors think we should give them to "get it right".

You seem to have made the diagnosis to your satisfaction and I am sure to your daughter's satisfaction. If I were you I would tell the doctor that it is obvious that she is gluten intolerant and if they couldn't find celiac disease before, she either does not have it or they did not do enough blood tests or take enough samples during the scope (how many did they take?) They are not going to get a "do over" at your daughter's expense. I would also ask him to give you a letter diagnosing her as gluten intolerant that you can use when necessary during her schooling.

This is all, of course, dependent on your not needing the diagnosis of celiac for some reason.... I am just stating how I feel about it. And you did not mention how long a challenge he was proposing. But it still sounds barbaric with the symptoms she has had.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 Takala

 
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Posted 11 October 2012 - 08:37 AM

No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_< :angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying
"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."
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#4 GottaSki

 
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Posted 11 October 2012 - 08:39 AM

I agree and think you were absolutely correct to refuse the repeat endoscopy. Aside from being cruel - there is no guarantee that a challenge would produce positive biopsy results - while it would certainly harm your daughter's health.

Should you find you need a diagnosis for school or other reason in the future - perhaps you can try a GI that specializes in Celiac Disease - or even her primary doctor may be willing to provide proof of diagnosis based on her history. I can tell you that we have not had to provide any documentation for my kids that tested negative, but had severe health problems resolve once gluten-free.

Perhaps the doctor would like to consume a just a little ground glass each day so we can check if there is any damage after a few months ;)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 kvanrens1

 
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Posted 11 October 2012 - 08:43 AM

Thanks Mushroom. That is exactly how I feel. I just wanted confirmation that I was not being crazy for refusing to put my daughter through that. I cannot stand the thought of going back to how she used to feel.

My main goal is to have documentation when needed for school. With or without the scope, I believe the GI doctor will work with us on that.
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Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


#6 kvanrens1

 
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Posted 11 October 2012 - 08:52 AM

Thanks Takala and Gottaski. I have to admit, I was surprised that he even suggested it after my going over all the issues that have resolved after going gluten free.
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Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


#7 frieze

 
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Posted 11 October 2012 - 10:23 AM

No, you are not "wrong."

Because the doctor knows you have insurance that will reimburse him for screwing up her diagnosis again, because now the chance of it being negative is even higher, you did the right thing.

What a sadistic son of a .......... <_< :angry:

This is the equivalent of going to a new doctor 7 months after recovering from an infectious disease, and the doctor saying
"why don't we re-infect you with the bacteria, and then I can run a culture and treat you with a better (more $expensive$) antibiotic."

LOL, we are on the same page. The phrase that came to my mind was "No )(%$^**( way!
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#8 megsybeth

 
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Posted 12 October 2012 - 06:04 AM

I'm with you. I made a very similar decision to not do a scope with a gi who had proven herself ignorant of celiac. When she called me and said, "I've never seen a child get a negative blood test and then get a positive biopsy but I GUESS it does happen", I just knew I didn't want this person scoping my child and profiting from it. I'm sure she has sent tons of celiacs away from her practice because she doesn't believe they can have it and/or doesn't know how to recognize it. Honestly I don't want her to have my insurance company's money or mine!

So I decided to switch to a specialist in Celiac. I'll go see her but it will be another month. I couldn't get in for an INITIAL visit any sooner than a month, which would mean another month for a scope. I just tested positive for celiac. My son has it. I wouldn't have him keep eating paint to see if the paint has lead in it. He'll go gluten-free for six months and we'll observe him. If a doctor doesn't diagnose based on that, I'll keep looking for one who does!

OP, I'm feeling a little uncertain too because I like to follow the rules. But seeing your post about your daughter's progress (my son is very similar) gave me hope. And you reminded me what really matters, the health of our kids. Thanks for that!
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