Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

(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:

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




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
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined