2 year old possibly having celiac

[Kayrod12]

During the stay at home orders and grocery shortages my family ate more processed food. My 2 year old who has always had loose stools started having stools that smelt like sourdough bread. Via telemedicine my sons pediatrician added the celiac bloodwork to his 2 year old blood work but since he was only 22 months she didnt know if it would show anything. At the time i spoke with her i already had my son off gluten for 3 days and he pooped normal for the first time in his life. Reintroduced gluten and got his bloodwork done. He popped for the Anti Giladin? Antibody but not the main one and my pediatrician asked if anyone had celiac in the family which I didn't know. Went to GI dr and he said 50/50 he had it but needed an endoscopy to confirm. Scheduled it but i live in NY and with the state of things here back then it was cancelled and i had a hard time rescheduling. Took my kid off gluten for a little less then a month and decided to wait for stuff to calm down here then go see a different GI dr (who actually answered the phone lol) his diarrhea only got a little better and i realized he had diarrhea when he ate carbohydrates. Apparently this is pretty normal with newly diagnosed kids they have other digestive problems while their guts heal, atleast thats what i read online. With that fact and the hospitals and doctors getting better here i scheduled an appt with another GI dr and put my son back on gluten a week ago. His appt is in 5 days. My question is the new dr will most likely want an endoscopy will the month-ish my son was off gluten effect that result? I wish i hadnt taken him off but living where i live with the global situation i wasnt sure how long it would be and i couldnt let my son spend all day and night screaming and having dehydrating diarrhea. If we schedule the procedure 3 weeks from Wednesday he will be on gluten for basically a month, is that enough to get a result? Should i ask her to run bloodwork again before putting my kid under?

[trents]

I would ask that question to the GI doc who will be doing the endoscopy.

Many Celiacs cannot tolerate dairy and soy. There are other intolerances but those are the main ones.

Edited August 21, 2020 by trents

[Kayrod12]

3 minutes ago, trents said:

I would ask that question to the GI doc who will be doing the endoscopy.

Well that is the plan when we get in to see her. I was just asking for other peoples experinces getting and endoscopy after being off gluten. The delays COVID19 has played in getting my child diagnosed has been quite stressful and i was hoping people who went through this already would have some insight. This is my first time ever posting or asking a question on a forum so im pretty anxious. Idk if youve ever experinced the stress of having an ill child who you are unable to explain what is happening to them. If you have you would understand my motives behind seeking out other peoples experinces. Feeding my child a substance that puts him on the verge of dehydration without anyone to ask if its worth it or not is a lot. Thanks for taking the time to reply that thorough answer though.

[trents]

No, I get all that. I'm just suggesting contact the GI ahead of time about the going back on gluten for one month being enough. If it is, proceed. If not, reschedule or look at other options to address the distress.

[Kayrod12]

13 minutes ago, trents said:

I would ask that question to the GI doc who will be doing the endoscopy.

Many Celiacs cannot tolerate dairy and soy. There are other intolerances but those are the main ones.

Im aware of the other intolerances people have. My son has never consumed soy and tolerates dairy fine. My question was for people who got diagnosed after being off gluten for a few weeks. 

[plumbago]

My question would be for how long your son has been back on gluten? But even knowing the answer to that question, it may still be difficult for us to know or say whether (resumption of) villi damage would occur in time to be detected upon re-scoping. I'm so sorry you're going through this, gosh, I can't imagine the anguish.

These are tough questions to answer, and may (may) be better addressed at a center that specializes in Celiac. Or perhaps your GI is really good. I mention the centers because in my experience, GIs are not particularly knowledgeable in a detailed way (in the way we really want them to be) about Celiac.

I was scoped in the Fall of 2019, 9 years after my original celiac disease diagnosis. It was normal, no real villi damage detected.

Edited August 21, 2020 by plumbago

[Kayrod12]

2 minutes ago, trents said:

No, I get all that. I'm just suggesting contact the GI ahead of time about the going back on gluten for one month being enough. If it is, proceed. If not, reschedule or look at other options to address the distress.

Yeah, doctors here dont give info like that idk about the rest of the country. I have called the GI dr and the Pediatrician and they said they couldnt tell me anything until he was examined hence the question about asking for another blood test before allowing them to do an endoscopy 

[Kayrod12]

1 minute ago, plumbago said:

My question would be for how long your son has been back on gluten? But even knowing the answer to that question, it may still be difficult for us to know or say whether resumption of detectable villi damage would occur in time prior to scoping. I'm so sorry you're going through this, gosh, I can't imagine the anguish.

These are tough questions to answer, and may (may) be better addressed at a center that specializes in Celiac. Or perhaps your GI is really good. I mention the centers because in my experience, GIs are not particularly knowledgeable in a detailed way (in the way we really want them to be) about Celiac.

I was scoped in the Fall of 2019, 9 years after my original celiac disease diagnosis. It was normal, no real villi damage detected.

So hes been back on for about a week. Your right about doctors. Everything is so vague and noone has any urgency. My questions may come off looking for medical advice but i think I was more interested in if people were able to get an actual diagnosis after being off gluten. I had no choice but to take him off. That month if i kept him on im sure he would have been hospitalized and there were no appointments for 4 weeks with the GI dr. Im gonna call around and see if there is a place around me that specializes in Celiac who i can get some answers from. Things are pretty normal here now so maybe ill be able to get someone.

[Kayrod12]

I dont know much about Celiac Disease besides what ive read online. The pediatrician mentioned the test over a skype call then the positive result over the phone, one meeting with a GI dr who gave me no answers and made me sound like a crazy person for even asking him to explain stuff to me with out an endoscopy (that he cancelled) and then radio silence for weeks.

[plumbago]

1 minute ago, Kayrod12 said:

So hes been back on for about a week. Your right about doctors. Everything is so vague and noone has any urgency. My questions may come off looking for medical advice but i think I was more interested in if people were able to get an actual diagnosis after being off gluten. I had no choice but to take him off. That month if i kept him on im sure he would have been hospitalized and there were no appointments for 4 weeks with the GI dr. Im gonna call around and see if there is a place around me that specializes in Celiac who i can get some answers from. Things are pretty normal here now so maybe ill be able to get someone.

Ok, good luck, and please SD and wear a mask!

I still don't have a good sense of the total time on and off gluten your son has experienced. Not that having that info will be determinative, as I've said, but I can possibly offer an education guess.

3 minutes ago, Kayrod12 said:

I was more interested in if people were able to get an actual diagnosis after being off gluten

This is a very common question on this site. The standard advice (granted, advice given to adults) is to be consuming gluten, which as you know makes sense. But for a child is a different matter.

If it's been recent enough that blood was drawn you may be able to call up the doc who ordered the test to see if they can add a genetic test. ? Just a thought, likely it's too late. And insurance may not cover that test.

[cyclinglady]

All celiac testing (except genetic which just rules out celiac disease) requires a person of any age to be on gluten.  If a person is gluten free, they can do a “gluten challenge”.  This requires 6 to 12 weeks (varies based on celiac center) on gluten daily (1 to 2 slices of bread or equivalent) for the blood tests.   Only two weeks are needed for an endoscopy.  If you are going to see a GI, he or she might try for a repeat blood test, but if your child becomes too ill, then they would proceed with an endoscopy.  They would make that call and know that challenges should be under the supervision of doctors.  Some GI’s might take the genetic test, a positive on the celiac panel (DGP, TTG or EMA) and with a good response to a gluten free diet, give  a celiac disease diagnosis.  Seeing a GI is important because it might be celiac disease or it might be something else or even a combination.  One celiac girl , Nicole, was so sick.  Even after her diagnosis, she was still ill.   Turns out she also had a birth defect called a veil (besides celiac disease), which restricted her ability to digest food without pain (her intestines were in knots, I think).  
 

https://www.allergicliving.com/2017/12/14/celiac-disease-gluten-symptoms-linked-to-eating-disorders-even-anorexia/

Get and keep copies of all his records. Prepare a time line of events that occurred to your son over the last few months.  Look at your family history of any autoimmune disease and chart that.  
 

Finally, hang in there.  Having a sick kid is hard!  You are doing the right thing advocating for your son.  Be calm, stay informed by researching and find a doctor who will work with you.  Know that the DGP test is best for kids under the age of two or even a bit older as kids do not develop antibodies on schedule (like walking and talking!)  it sounds like you had this test, so you are lucky to have had a positive.  Know it only takes one positive on the celiac panel.  Know that some people might never get a positive on the TTG (like me who only tests positive to the DGP IgA and am biopsy confirmed).  Know that some kids are IgA deficient which can mess with testing and some kids are seronegative (applies to adults too).  

He had a positive on the DGP, right?    He Was scheduled to get an endoscopy (or a again referral) months ago.  I would push to reschedule the endoscopy because just  three or four weeks on a gluten diet might produce a negative on the celiac blood panel.  Then that could cause doubt in the mind of the new GI.   Was the first test correct?  You might end up in diagnosis limbo land which is not a great place to be.  So, get a copy of that first test result!  Find a celiac savvy Ped GI (read the bios of the doctors).  
 

Let us know what happens.  You could help other parents.  Oh, read though the kid section of the forum or use the search button.  I bet there has been a parent in the exact  same situation....okay, no Pandemic....but still!  😆

 

 

Edited August 21, 2020 by cyclinglady

[Wheatwacked]

When my infant son was diagnosed as Celiac (one of thirteen in Israel being treated in 1976) by biopsy, it had never even occurred to anyone that wheat was the problem so a trial gluten free diet was never tried. There was so little understanding of the problem (and general denial that it even existed) that biopsy was the only way to prove it not psychological.  It was suggested quite often that my wife take Valium because her anxiety was the cause of his discomfort. He looked like a child of the Biafra famine. It took pulling many favors to finally get to the one doctor in the country treating Celiac. Biopsy diagnosis and six months on Nutramigen and he was healthy. There are non-invasive ways nowadays to answer the question, so the only reason to continue to make your child suffer for the purpose of a Celiac Diagnosis by biopsy the is denial by the general public that the problem is real. Wheat is the most traded commodity in the world and Norman Borlaug received the Nobel Prize, the Presidential Medal of Freedom and the Congressional Gold Medal for his work developing Modern Wheat; so to not eat wheat gluten (barley and rye included) is ant-social.

This is off the wall thinking, but if your child was having mental problems, and they improved after he stopped eating lead paint chips, would you put him back on the lead chips so he could be properly diagnosed?

One of every ten first degree relation to a celiac patient is at high risk to be celiac themselves. My only true regret in life is that I and my wife did not go gluten-free back in 1976 when my son's doctor suggested. In retrospect, she suffered lifelong from many gluten related symptoms before dying in 2005. In 2014 I finally came out of denial, started the gluten-free diet; and I found the complaints I had been living with, were simply gluten related. I've spent the last six years undoing the damage that only took six months for my son to recover from.

[cyclinglady]

My husband went gluten free 20 years ago per the advice of my allergist and his general practitioner.  The diet worked.  Does he have celiac disease?  Who knows?  He refuses to do a challenge and he remains faithful to the diet (no small feat).  Twelve years later, I was diagnosed with celiac disease.  He will be the first to tell you that I have received way more support from family, friends and even, medical.  My diagnosis offers some protection.  At the very least, public schools, hospitals and jails must be able to provide me with safe food.  My diagnosis has made it easier for my daughter to be tested periodically as well as my other first-degree relatives.  (The 1 out of 10 number is dated.  Mayo Clinic just found that 44% of first degree relatives have celiac disease — even if asymptomatic).  
 

I think it is fine to go gluten free if you are an adult.  Most of the forum members have struggled to get a diagnosis or have given up.   However, this child is going to need a 504 plan if he does have celiac disease.  My daughter has test negative twice.  She was tested before she went to college so we could select a school that would be able to accommodate her gluten-free diet if she had celiac disease.  As an adult and now out of the dorms, she can go gluten free or not if she develops symptoms.  A firm diagnosis in an adult is not as critical in my opinion.  It helps to rule out other concurrent illnesses too.  
 

 I must politely disagree that wheat causes harm to so many.  It is just a theory.  It is harmful for those who have celiac disease and that has been scientifically proven.  

Edited August 22, 2020 by cyclinglady

[GFinDC]

It is a good idea to do some internet searching for a celiac doctor.  Also search for celiac support groups in your area.  Sometimes you can find them on Facebook.  A celiac support group can often help by suggesting a local doctor who understands celiac disease.

My understanding is that it can be harder to diagnose children because their immune systems are not fully developed.  So it might make sense to consider going gluten-free without a diagnosis if the GI agrees with that.  The result of diagnosis is we go gluten-free for life.  Same thing if we aren't diagnosed though.  Another thing to check is mal-absorption issues.  Celiac gut damage can cause low levels of some vitamins and minerals.  It can also make it harder to absorb supplements.

If the diagnosis is important for getting a 504 plan set up then that may be a problem.

[Wheatwacked]

On 8/21/2020 at 8:38 PM, cyclinglady said:

My diagnosis offers some protection.  At the very least, public schools, hospitals and jails must be able to provide me with safe food.

Sad, but so true. Without a clinical diagnosis, gluten-free is considered nothing more than a fad diet and it's adherents nothing more than annoying.