Need opinions on what to do

[Dzteach]

Hello everyone!  I am looking for your opinion on what to do with my almost 10 year old.  I was dx with celiac about 2.5 years ago. I had the highest blood levels my immunologist had seen in a long time. She said it was my choice to have the biopsy because she was pretty certain with my high levels I no doubt had it. I decided to do the endoscopy to make sure that nothing else was damaged down there.  Having been undiagnosed for so long I was severely vitamin deficient and suffering from now we know is irreversible neurological issues and joint issues that have turned into psoriatic arthritis. I have 3 kids and said I would test them whenever they showed symptoms or were getting blood drawn already. My oldest had it done...blood work negative...so far.  My almost 10 year old was tested via blood work and got the results on Monday that he has celiac.  The pediatrician referred me to the gastro. Who can not get him in for an appt until the END OF SEPTEMBER.  I can not in my right mind continue to feed my child gluten until then.  Having the disease and suffering so bad when I accidentally ingest it  I know I am actually poisoning him every time he eats it.  BUT if I take him off it he can not have a true biopsy result.  My ped said to take him off gluten and than put him back on it two weeks before the endoscopy.  I have done enough research to know that a). It doesn't work that way and he could have such a horrid reaction that I will not do that to my child. 

So...what would you do?  Have him continue to eat it knowing it is poison to him even though his external symptoms are not too bad?  Take him off gluten and say he has celiac without the endoscopy?  And than with that do genetic testing instead??  I am so so lost and confused as well as devastated he has to live this way from now on.  I know that is based all on the newness of the dx.  Thankfully, we have really made light of my diagnosis with the kids as to not worry them too much, but the do know how extremely sick I get when I accidentally eat it. I have attached his results so you can see them.  I am now also waiting on my daughters results ,...she was tested today.  

Open Original Shared Link

[ravenwoodglass]

Welcome to the board. It can be important for young ones to have a firm doctor derived diagnosis so they can get the accomodations they will need in school. Since his symptoms are not to severe it would IMHO be best to keep him on gluten until the endo is done. You could cut down his intake if that makes you feel better.

You could also talk to his ped and see if the doctor will give a formal diagnosis based on resolution of any symptoms and negative future celiac panels.

[squirmingitch]

I completely agree with ravenwoodglass. Kids heal MUCH faster than adults.

I would also keep calling the doc doing the endoscopy every single day to see if there are any cancellations so you can get it done sooner.

[Jimmie 45]

I was dx via blood draw in July and didn't want to have an endoscopy and my insurance didn't require it. The doctor wrote it up that have Celiac disease.  After awhile when my symptoms seemed to be continuing in December I had the endoscopy. I didn't eat any gluten before the test, I had been gluten free for almost 5 months. Test just confirmed what the blood work already told us. My numbers were extremely high, GI doctor said he had only seen numbers that high 1 other time and he's been doing this for over 30 years. So, I would really check with the GI doctor and see if being gluten-free for the time leading up to the appt. Would be that big of a problem. 

[pschwab]

We took my two year old to the pediatrician for stomach issues. His blood tests made our ped suspect celiac so he referred us to a ped gi specialist. They couldn't get us in for 1.5 months. I called the regular ped office back and our ped put in a call to the ped gi specialist. Low and behold they found an opening within two weeks! (Huge eye roll) Maybe you could call your ped with your concerns and ask him or her to assist? When we did go to the gi specialist he said my son's numbers were so high that we could do genetic testing instead of the biopsy and could very comfortable confirm celiac if he had the gene. That way he could go gluten free immediately instead of waiting two weeks for the biopsy. Good luck!!

[silk]

I have never had endoscopy or blood work done but was told by my doctor, after several other tests (been so long ago that I can't remember what all they did) that based on my symptoms and the fact that they ended when I discontinued eating gluten and other conditions that I have (one being early onset type one diabetes), that he did not feel it was necessary to do further testing and that his diagnosis was celiac disease.

i know this was probably not the perfect way for him to diagnose but an 'official' diagnosis is a diagnosis and part of my medical record. No one has ever asked for my numbers at a restaurant or another doctors office.  If I say that I have it, anyone I have said it to respectfully accepts that I have it.

my point, with no disrespect intended to anyone who has gone through blood work and endoscopy, is that I have never ever had anyone require that I substantiate the disease with a medical file and have accepted the fact that I have it.  I have changed doctors a couple of times and celiac disease is part of my profile.  No additional proof necessary. Also, all three of my daughters and two of my 7 grandchildren have gluten problems. I also have a first cousin who did endoscopy and blood work and was off the chart positive for celiac. In fact almost everyone in my fathers side of the family, including my grandfather have stomach issues.

My youngest daughter and the two grandchildren ate gluten free at school and were never required to prove anything with numbers or even from their doctor in order to receive the accommodation.

i understand your hesitance to have your child continue to eat something that is making them sick and IMHO, unless there is a reason for you to need proof in the form of a report, I can understand why you would think twice about putting him through additional testing.

i wish you good luck and peace of mind with whatever you decide to do.

[StephanieL]

3 hours ago, silk said:

i understand your hesitance to have your child continue to eat something that is making them sick and IMHO, unless there is a reason for you to need proof in the form of a report, I can understand why you would think twice about putting him through additional testing.

i wish you good luck and peace of mind with whatever you decide to do.

Diagnosis for kids is different than adults. Also, there is often a need for a firmly documented diagnosis for many reasons (like for school accommodations and dietary accommodations in school/hospital).  

To the OP- is it ideal? No but is it the way they need it done. I would call to get on the cancellation list at the GI or have your ped cal as mentioned above but if you need to wait, I would keep the kiddo on till all the testing is complete.

[silk]

As I stated, my children were accommodated at school and have also been accommodated in the hospital without requiring proof from a doctor to do so but I understand that requirements may be different elsewhere.

 

[Midwitch]

Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 

[Dzteach]

I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then. 

My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread ?

Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!

[Gemini]

Good luck with all the testing.  You are doing the right thing by telling your son to gluten up!  Buy him one of those gluteny cakes at a bakery...if that doesn't spike his numbers, nothing will.