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(16 Mos Old) Introducing Gluten Back Into Diet For Testing, Potential Hospitalization


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#1 wvasweetness

 
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Posted 19 February 2013 - 10:49 AM

We have discussed potential testing for our 16 month old son for several months.  However, his very severe symptoms when he is exposed -  even CC exposure - are preventing us from moving forward.  Our pediatric gastro recommends he be on a diet with gluten for a minimum of 4 weeks prior to testing.  Both she and our pediatrician agree that exposure for 4 weeks would most likely hospitalize him because of dehydration and other symptoms.  Even "minor" exposure leaves him covered in eczema, writhing in pain (crying for hours at a time) with severe reflux and diarrhea for at least 48 hours, often longer.  He also exhibits neurological issues, like walking directly into walls and hitting his head against the floor.

 

Even though we are somewhat medically conservative, we recognize the need for an official diagnosis.  What we ARE questioning is the best time to move forward with the testing.  Doing it now would mean that our son would retain few (if any) memories of the testing or the sickness he will certainly endure prior to testing.  However, at this age he can't voice symptoms/pains to us.

 

Any input on this?  Has anyone dealt with severe symptoms during the 4-6 week period of gluten intake prior to testing and/or potential hospitalization because of it?


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#2 kareng

 
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Posted 19 February 2013 - 11:02 AM

My suggestion is that you , or even better, the doctor, email the experts. Dr. G is actually a ped doctor, I think. I'm thinking they may tell you he is too young to produce enough antibodies. If that is the case, it will save you from doing it twice - now and a couple of years along.

http://www.curecelia....org/contact-us
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#3 wvasweetness

 
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Posted 19 February 2013 - 11:47 AM

My suggestion is that you , or even better, the doctor, email the experts. Dr. G is actually a ped doctor, I think. I'm thinking they may tell you he is too young to produce enough antibodies. If that is the case, it will save you from doing it twice - now and a couple of years along.

http://www.curecelia....org/contact-us

 

I didn't even know this was possible - to be too young to produce the antibodies necessary to get a positive diagnosis through antibodies.


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#4 kareng

 
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Posted 19 February 2013 - 11:57 AM

I didn't even know this was possible - to be too young to produce the antibodies necessary to get a positive diagnosis through antibodies.



http://www.curecelia...ble-for-infants
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#5 mamamonkey

 
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Posted 19 February 2013 - 01:34 PM

I wouldn't do it. Is getting another opinion an option?


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Hi, I'm Melissa

Mostly gluten-free 5/12 in an attempt to help migraines

Surprise! All my GI symptoms resolved (that I was blaming on not having a gallbladder)

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#6 tarnalberry

 
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Posted 19 February 2013 - 01:46 PM

Wait - they agree that every time he gets gluten, he has horrible symptoms, but they won't diagnose him until he has horrible symptoms for a month?  This is completely illogical, and I would point it out to them.  Diagnosis CAN be made on dietary response alone.


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Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
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#7 MoMof2Boyz

 
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Posted 19 February 2013 - 01:51 PM

With the severe symptoms you son has, I would not put gluten back in his diet. It is not worth the risk and you already know your son's reaction to gluten. I understand the need to know with the tests but you already know he has a severe problem with gluten that can land him in the hospital. I would not do it. period.


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#8 ravenwoodglass

 
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Posted 20 February 2013 - 11:43 AM

With the reactions this little guy has it is inconcievable to me that a doctor would want to do this to him. Can you find another doctor with some common sense who might give you an 'official' diagnosis based on his symptoms and the resolution of them on the diet? There is no way I would do this to my child but ultimately the choice is yours alone to make. Do keep in mind that even after the challenge he may have negative test results. Ask yourself what you will do if that happens. Will you put him back on a gluten diet? If the answer is no then I would tell the doctor to take a long walk off a short pier.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 Takala

 
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Posted 20 February 2013 - 04:03 PM

My current doctor has agreed to consider me a patient who avoids gluten, or gluten- intolerant, or "allergic" to gluten, for the purpose of dispensing medications, etc, on my records, after I told him hell would freeze over before I would ever be forced to consume it again (after 5+ years off of it, and a resolution of many chronic symptoms).  While this does not give me an official seal of celiac diagnostic approval, it does go along with the medically verified other test results I had, quite visible to the naked eye bone loss,  (my c- spine looked shocking) and brain lesions, aka "bright spots,"  which showed on a scan, which are consistent with the neurological form of celiac/gluten intolerance/whatever the "experts" want to call it this week.  I have subsequently told medical people I_Am_Gluten_Intolerant_NO WHEAT GRAIN FAMILY_Do_Not_Give_Me_Exposure_To_It, and have never been questioned on it.  The only 2 other situations I could think of possible impact would be in a boarding school, (hypothetical, too old) where, since I have other allergies anyway, it would be treated as just - another - food -allergy, or a work situation, where, since I would not take a job whereby I could not pack a meal & snacks if I needed one, it's moot.  "Allergies"-  mold, dust, ragweed, wheat rye barley (and a few others...)  Not the end of the world.  I trade off the technical accuracy of it is really some sort of auto immune reaction, for the inaccurate form of understanding by the general public, which can protect me better in these circumstances.  There is no question I have auto immune stuff, closely associated with it, I've been previously diagnosed with it, even if the one stupid HMO attempted to "fibromyalgia" me.  

 

Since it is an observable phenomena that the child gets severe symptoms when ingesting gluten, then that may have to be it.  

 

There is no reason that any doctor shouldn't be willing to scope a small child right now, who is displaying such symptoms, even if the test came back negative, which could happen anyway even if he WAS put back on gluten for an extended period of time, the end result is going to be the same-  he isn't going to be eating gluten anymore.  Unless you continue to feed it to him and make him sick.  Which would be illogical and inadvisable.  But a baseline scope should be done anyway.   The entire concept of sickening a tiny, defenseless child deliberately and drastically, for diagnostic purposes only, needs to be revisited on ethical grounds, in my opinion.  I believe in the future they will come up with a better way to diagnose celiac, just as a result of this supposed medical "cure" or "treatment" that these researchers are currently working on.  

 

The diagnostic guidelines for an official diagnosis are typically given for medical insurance reimbursement purposes in the USA, specifying doctors can't do (hypothetical) needed procedures #2 and #3 unless the first procedure #1 gives a certain result.  They go ahead and scope some people and children who do not test bloods positive, if the symptoms upon ingestion of gluten are still severe enough....  so what is the hold- up, really ?  


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#10 Ollie's Mom

 
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Posted 20 February 2013 - 04:09 PM

Wow.. Just wow. I would look for another doctor who would diagnose based on symptoms and resolution of said symptoms on the gluten-free diet. I am with the PPs - I can't imagine any doctor being willing to subject a toddler to such severe reactions and hospitalization by giving the child the thing that the doctor already knows makes that child sick. It is up to you, but I would never subject my child to that.
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#11 frieze

 
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Posted 20 February 2013 - 04:58 PM

If a parent persists in feeding a child something that that child is intolerant of to the point of being ill, who do you think the docs would be calling???  But it is ethical and legal for them to demand it be done, to get a diagnosis???


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#12 megsybeth

 
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Posted 20 February 2013 - 08:26 PM

Oh no, this is not a good idea. I can understand the appeal of testing young, for some procedures that does make sense. But do you know what makes a brain? Fat. Cholesterol, fat. Your child is doing some of the most important neurological growth right now. This is why nutrition and high calorie diets are so critical. You cannot consider depriving your child of nutrition so drmatically.

 

My son didn't get the official diagnosis. I just lie.  I'm lucky enough not to need free lunch but I think even in my school district they would accomodate because they are decent. Teachers are also usually decent and if not, even if you have an official dx they'll probably do what they want. How could it really be important to have a celiac vs. gluten intolerant dx?


Please find another doctor.


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#13 wvasweetness

 
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Posted 25 February 2013 - 06:46 AM

Thanks, everyone.  We already drive more than 2 hours to a "good" specialist, which is why we even considered this in the first place.  But even being new to the whole celiac world, my husband and I knew that this couldn't be the only option for diagnosis.


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#14 wvasweetness

 
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Posted 25 February 2013 - 07:48 AM

With the reactions this little guy has it is inconcievable to me that a doctor would want to do this to him. Can you find another doctor with some common sense who might give you an 'official' diagnosis based on his symptoms and the resolution of them on the diet? There is no way I would do this to my child but ultimately the choice is yours alone to make. Do keep in mind that even after the challenge he may have negative test results. Ask yourself what you will do if that happens. Will you put him back on a gluten diet? If the answer is no then I would tell the doctor to take a long walk off a short pier.

 

Yes, this is our greatest fear.... that he will be severely sick for a month, have the test done and it comes back negative.

 

 

My current doctor has agreed to consider me a patient who avoids gluten, or gluten- intolerant, or "allergic" to gluten, for the purpose of dispensing medications, etc, on my records, after I told him hell would freeze over before I would ever be forced to consume it again (after 5+ years off of it, and a resolution of many chronic symptoms).  While this does not give me an official seal of celiac diagnostic approval, it does go along with the medically verified other test results I had, quite visible to the naked eye bone loss,  (my c- spine looked shocking) and brain lesions, aka "bright spots,"  which showed on a scan, which are consistent with the neurological form of celiac/gluten intolerance/whatever the "experts" want to call it this week.  I have subsequently told medical people I_Am_Gluten_Intolerant_NO WHEAT GRAIN FAMILY_Do_Not_Give_Me_Exposure_To_It, and have never been questioned on it.  The only 2 other situations I could think of possible impact would be in a boarding school, (hypothetical, too old) where, since I have other allergies anyway, it would be treated as just - another - food -allergy, or a work situation, where, since I would not take a job whereby I could not pack a meal & snacks if I needed one, it's moot.  "Allergies"-  mold, dust, ragweed, wheat rye barley (and a few others...)  Not the end of the world.  I trade off the technical accuracy of it is really some sort of auto immune reaction, for the inaccurate form of understanding by the general public, which can protect me better in these circumstances.  There is no question I have auto immune stuff, closely associated with it, I've been previously diagnosed with it, even if the one stupid HMO attempted to "fibromyalgia" me.  

 

Since it is an observable phenomena that the child gets severe symptoms when ingesting gluten, then that may have to be it.  

 

There is no reason that any doctor shouldn't be willing to scope a small child right now, who is displaying such symptoms, even if the test came back negative, which could happen anyway even if he WAS put back on gluten for an extended period of time, the end result is going to be the same-  he isn't going to be eating gluten anymore.  Unless you continue to feed it to him and make him sick.  Which would be illogical and inadvisable.  But a baseline scope should be done anyway.   The entire concept of sickening a tiny, defenseless child deliberately and drastically, for diagnostic purposes only, needs to be revisited on ethical grounds, in my opinion.  I believe in the future they will come up with a better way to diagnose celiac, just as a result of this supposed medical "cure" or "treatment" that these researchers are currently working on.  

 

The diagnostic guidelines for an official diagnosis are typically given for medical insurance reimbursement purposes in the USA, specifying doctors can't do (hypothetical) needed procedures #2 and #3 unless the first procedure #1 gives a certain result.  They go ahead and scope some people and children who do not test bloods positive, if the symptoms upon ingestion of gluten are still severe enough....  so what is the hold- up, really ?  

 

They are only willing to scope him after a MINIMUM of 4 weeks on a gluten diet.  We say the same - the end result is the same: if it's negative, he won't have gluten... if it's positive, he won't have gluten.

Yes, we are just now joining the frustration with (lack of) testing options...

 

 

If a parent persists in feeding a child something that that child is intolerant of to the point of being ill, who do you think the docs would be calling???  But it is ethical and legal for them to demand it be done, to get a diagnosis???

 

I know, it doesn't at all seem right to be able to say "well, I know that forcing your toddler to eat gluten will make them sick and potentially hospitalize him, but go ahead and do it and we will do a test that may or may not be accurate."  :(


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