• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

(16 Mos Old) Introducing Gluten Back Into Diet For Testing, Potential Hospitalization
0

14 posts in this topic

Recommended Posts

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?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


kareng    1,992

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.cureceliacdisease.org/contact-us

Share this post


Link to post
Share on other sites

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.cureceliacdisease.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.

Share this post


Link to post
Share on other sites
Ads by Google:


tarnalberry    314

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.

  • Upvote 2

Share this post


Link to post
Share on other sites
MoMof2Boyz    3

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.

  • Upvote 2

Share this post


Link to post
Share on other sites


Ads by Google:


ravenwoodglass    1,211

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.

  • Upvote 1

Share this post


Link to post
Share on other sites
Takala    413

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 ?  

Share this post


Link to post
Share on other sites
Ollie's Mom    29

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.

Share this post


Link to post
Share on other sites


Ads by Google:


frieze    112

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???

Share this post


Link to post
Share on other sites
megsybeth    5

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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."  :(

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,861
    • Total Posts
      938,368
  • Member Statistics

    • Total Members
      65,761
    • Most Online
      3,093

    Newest Member
    benjamin1993
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ok so is this really true?!?! Conventional? Remember, the fecal transplant was first described in the 1950s, but took decades to catch on as a conventional treatment for gut disorders, such as c-dif bacteria, partly because it was seen as crude and somehow objectionable. But it proved to work. Really well. So much so that it's now a fairly conventional treatment.
    • You are super sweet. I'm sorry your extended family isn't great about get togethers and cards. My family is the same. Once my parents died I don't have anyone who really cares about me except for my husband and kids. My parents started getting really weird about stuff as they got older, and my sisters are way older than me and we didn't grow up together, so we aren't close at all. In fact one sister hates me. They didn't even come to our parents funerals. Families pretty much suck so you gotta appreciate whatever you can put together for a support system. I come here every day looking for a smile or laugh, an encouraging word, or an opportunity to give advice. You guys are definitely part of my extended family   for what it's worth I would be up for secret santa.
    • Wow everyone my memory lane stuff just keeps popping up on this forum!!!! Thanks for sharing the post op and Audrey the pic. I had what looked like this on my inner left ankle in my late 20's!  It never got diagnosed at the time. I was seeing Dr's at time early pregnancy and then missed miscarriage.  dr's I had at the time I asked didn't know what it was. Period of time I had some of the worst headaches of my life etc. I didn't know if I had been bitten by a spider (brown recluse not in my area though) , the miscarriage, or picked up something from the hospital during my follow up miscarriage stuff-stirrup /ankle. I don't have a pic of it to share. Dr's didn't know, my mom a nurse didn't know , that left my husband who is a bit more holistic based and helped me on healing it  at home. I am really shocked to see see posts and all too often say wow! That's my .... from whatever decade  I'm newly recognized/diagnosed too so this was 15 years ago! wow if any one has any active pg I wish you comfort and swift healing . Been there but didn't have the puzzle piece until you gave it to me now. so many puzzle pieces....finally .....start making an image since I joined this forum.    
    • I can guarantee you that once you get your weight back up to normal, your period will come back.  You sound really malnourished and if your weight gets too low, your periods will stop.  Don't panic.......I was down to about 92-94 pounds at diagnosis so you will be able to heal if you do the diet correctly and don't cheat. Once you start to feel better and your other problems are under control , you will find it easy to stick to the diet. Nothing beats health!  Good luck to you!
    • As the other's have stated, you most certainly can go on to have additional AI diseases whether or not you are Celiac or NCGS.  Many AI diseases can be figured out without mainstream testing, as you know from your severe symptoms of Sjogren's.  I also have Sjogren's and knew that I did without any doubt because of the severity of my symptoms.  I was later tested with a new PCP and yes, they confirmed what I already knew.  Have you had the blood work for Sjogren's?  Not that it matters because you already know. As Sjogren's really has no treatment other than treating the symptoms, having a confirmed diagnosis doesn't always matter.  Just see the doctors you need to see for the specific problems you have stemming from it and that's all you can really do.  So far, it has worked for me.
  • Upcoming Events