• 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 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

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?

0

Share this post


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


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

0

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

2

Share this post


Link to post
Share on other sites

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.

2

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.

1

Share this post


Link to post
Share on other sites

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 ?  

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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???

0

Share this post


Link to post
Share on other sites

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.

0

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.

0

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."  :(

0

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
      106,799
    • Total Posts
      932,534
  • Member Statistics

    • Total Members
      64,288
    • Most Online
      3,093

    Newest Member
    paacollins
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am not getting enough vitamins my body needs before and after being diagnosed with celiac. Can anyone recommend great vitamins to help me get back on track. Everywhere I go the vitamins itself contains gluten or was made a gluten facility. I don't eat a lot because I am still getting sick so I need to find a way to get more nutrients into me.  Thanks!
    • It sucks when you've taken precautions and they don't pan out. Take heart however, although it feels like you're back to square one but one exposure doesn't negate all the healing that you've gone through. Eat simply and safely for now and get back on track. You should feel better soon. As for eating out, it's the same as when you learned to ride a bike. You dust yourself off, learn a lesson about that venue and get back on the bike. You need to balance risk and reward. Too far either way isn't the way to go. Hope you're feeling better soon  
    • My 9 year old daughter has the exact same marks as you. It is being dismissed as her doing it to herself. I honestly don't think she is but I do know once she gets the sores she is a chronic picker which does not help.  The main reason they say it is self inflicted is because they are only on her arms and legs - never her torso. Sorry I don't have anything for you but I was wondering where you are getting your sores?  I pulled my daughter off of gluten a year ago and they seemed to have cleared and two months ago I let her eat whatever they served at a birthday party and all the sores are back (still). 
    • Just one point on this - I'm no expert but I wonder if UTIs can present differently, depending on which section of the tract is infected?   Mine tend to be lower down in the urinary tract so I don't feel like I need to go to the loo a lot when I have one, but when I pee or afterwards it hurts, and then I get that feeling of my insides slipping out - as you put it.  My point is you may have a UTI in a different part of your urinary tract to normal.  Just a thought? 1. Diffuse pain sounds like it might be bloating. Are you drinking/eating dairy? 2. Sacroiliac joint inflammation can come about for all sorts of reasons - what you are suggesting would cause it.  However, I tend to find my pain transfers to the side of my groin and pelvis - not centrally.   Here is an interesting article which shows how it refers. http://www.massagetoday.com/mpacms/mt/article.php?id=14394 3.  I'm thinking perhaps it might be worth having a pelvic scan if you can? Internal and external. 4. Ditto - tight clothes are a distant memory! 5.  I'm no longer seeing a chiropractor.   I was in pain for months, then one day I underestimated the height of a step down and jarred my hip.  Agony!  Went to bed for four hours to sleep off the pain -  but the strange thing was my SI joint was much better for many many months after that! 6.  I agree - all this sort of stuff is highly ambiguous.  I remember when I was really concerned about my pain - which was before I had had my scan and then sigmoidoscopy - I did a lot of online research and it seems that a lot of women get unexplained pelvic pain.  So it appears we are not alone. If I were you I'd be inclined to pursue this with a GP, it might be a long journey but you should get some answers and peace of mind. I find unanswered medical questions only ever add to my pain - I think I must tense up with anxiety. Cx  
    • Thanks. Still figuring it all out. 
  • Upcoming Events