Got Results On My 3 Year Old

[justa]

The are positive from the endoscopy with intestinal inflammation...

What next?

[nvsmom]

I would imagine the gluten-free diet is next - did the doctor say to go gluten-free now?

[justa]

He said don't go overboard but it out anything obvious.

Come back in a month bc 2 weeks is the longest he has gone without throwing up.

If he throws up call immediately.

[nvsmom]

So you mean that he has intestinal inflammation but not enough damage to call it celiac disease? The doc said to go gluten-free by cutting out the obvious gluten but not to go overboard? Your doctor sounds uneducated in celiac disease! Did he do the blood tests or discuss NCGS with you?

Tiny, almost invisible amounts of gluten can hurt him. if he needs to be gluten-free then you need to do it 100%. No crumbs, no contaminated toaster use, no fish crackers. Just a couple of exposures to gluten every few weeks has the potential undo any benefits of eating gluten-free for a month in those with gluten sensitivities like celiac disease or non-celiac gluten sensitivity (NCGS).

For example, I was accidentally eating 5 or so fries a week that had wheat starch on them. I did that for two months. During that time I felt worse and worse; my migraines, bloating, and stomach pains all came back. It doesn't take much.

So you mean that he has intestinal inflammation but not enough damage to all it celiac disease? The doc said to go gluten-free but cutting out the obvious gluten but not to go overboard? Your doctor sounds uneducated in celiac disease! Did he do the blood tests or discuss NCGS with you?

Tiny, almost invisible amounts of gluten can hurt him. if he needs to be gluten-free then you need to do it 100%. No crumbs, no contaminated toaster use, no fish crackers. Just a couple of exposures to gluten every few weeks has the potential undo any benefits of eating gluten-free for a month in those with gluten sensitivities like celiac disease or non-celiac gluten sensitivity (NCGS).

For example, I was accidentally eating 5 or so fries a week that had wheat starch on them. I did that for two months. During that time I felt worse and worse; my migraines, bloating, and stomach pains all came back. It doesn't take much.

[justa]

First of all I literally found out this morning.

2nd he said he had intestinal inflammation and early signs of Celiac. I wrote what he told me. He is a pedi GI

From what I read celiac sensitivity can be different for everyone.

I think your response is a bit harsh.

I am asking for help not judgment.

[kareng]

First of all I literally found out this morning.

2nd he said he had intestinal inflammation and early signs of Celiac. I wrote what he told me. He is a pedi GI

From what I read celiac sensitivity can be different for everyone.

I think your response is a bit harsh.

I am asking for help not judgment.

 

 

Just because they are a GI, doesn't mean they know anything about Celiac.  Many of us have found that out the hard way.  I would ask him for some clarification.  I find doctors sometimes think what they are saying is obvious to everyone.  If he has Celiac, you do have to go all the way gluten free.  It is the only way he can heal.

 

Please, don't take our word for it.  Read what the experts say.  Maybe show some of it to your doctor so he can learn, too.

 

Open Original Shared Link

 

 

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms."

[1desperateladysaved]

Sorry, that you are having to deal with celiac disease.  Yet, I am hopeful that he will be on the mend soon.  Usually it is overwhelming at first , you can only take one step at a time, keep going.   I am glad for him to be diagnosed while young.  You can raise him to be strong and healthy. 

 

D

[kareng]

Here is a thread with a lot of good info:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[mommy2krj]

I don't think the response was meant to be too harsh. I think there is just a high frustration level here with doctors that either aren't clear on their meanings or that simply are uneducated about Celiac and NCGI. A lot of the people that respond here were sick for years and years and years before they finally found a doctor that thought to test them for Celiac. Now imagine your 3 year old going through what has been happening for another 30 or 40 years or heck even another 5....it's hard to think about, isn't it.

We're going through this with my 6 year old. He isn't nearly as sick as most of the histories I've read here. Mostly some constipation and occasional diarrhea and occasional vomiting. I was concerned because he was complaining every single day about his stomach hurting and it was starting to affect school and his eating habits. His blood work came back positive and we're still waiting for the endoscopy that is finally happening next week after a stupid bought with strep throat here!

 

I think that first response was just trying to make sure you understood that being celiac means absolutely no gluten despite the doctor saying what he did. You can't be a little Celiac....it's pretty much all or nothing....and yes, I'm including NCGI because from the sounds of it...they're pretty similar just without the intestinal damages.

 

Hugs. I know it's a lot to take in. I'm still working on taking it all in and we haven't even gotten as far as you have! Once the endoscopy is done though, my entire household will be gluten free because I don't trust myself to not have CC issues.

 

Good luck and hopefully the GI doc clarifies what they told you.

[nvsmom]

First of all I literally found out this morning.

2nd he said he had intestinal inflammation and early signs of Celiac. I wrote what he told me. He is a pedi GI

From what I read celiac sensitivity can be different for everyone.

I think your response is a bit harsh.

I am asking for help not judgment.

I apologize. I did not mean to sound critical of you. We are here to help and support each other and I try to do that when I can.

I did mean to criticize your doctor though. It is difficult to go overboard with the gluten-free diet. It is much much more common for people to not cut gluten completely and then continue to suffer. Hidden sources of gluten can do a lot of damage. For example, soy sauce and worchestershire sauce have gluten. This winter I repeatedly, accidentally glutened myself with fries that had wheat starch on them, I slowly felt worse and worse until I figured it out. Some people get glutened in restaurants by eating gluten-free fries that were fried in oil recently used to fry battered (gluten) chicken fingers, or by eating gluten-free pizzas made in contaminated pizzeria kitchens.... Unfortunately, to reap the benefits of the gluten-free diet, one must be very vigilant.

When your doctor said to just cut out obvious sources of gluten, I believe he was doing you a disservice and misleading you about how strictly gluten-free one must be. Luckily you are educating yourself about celiac disease in order to best help your son. If your son had a less inquisitive parent, it is possible that he would have continued to get glutened and not get well, he is lucky you are learning how to help him.

In my earlier response, I forgot to mention nutrient testing. Most celiacs need higher doses of some vitamins due to deficiencies such as calcium, ferritin, iron, potassium, D, B12, zinc, and magnesium. If the doctor did not run those tests, you might want to consider ordering them.

Once again, i apologize. Best wishes.

[justa]

This is just a lot for me to take in. The thing is he is 2 years 10 months. This is a young diagnosis in general. My Pedi has been very active in finding resolve for us. He was in for an ultrasound and endo within 2 weeks of his first appointment. 

He said that the type of inflammation he had was not common in children his age and he rarely gets biopsy results that result this way. It wasn't clear cut.

 

I don't know what to ask which is why I am here. This has been super quick. I am going to call him back and get more clarification. What I do know is he said don't go overboard... I am not sure why not go all out. I am confused in general.

[mommy2krj]

That would confuse me too. I think I would definitely be concerned that there is a lot of inflammation at such a young age too and would definitely want to cut out all sources of gluten to see if it helps. I don't know what else can cause inflammation of the small intestines that would resemble Celiac and from what I've read there isn't much that would....but I'm too new to this myself to even offer any real suggestions.

I would definitely call and ask for clarification. I would also ask how informed the doctor is with Celiac and if there is a doctor that is more informed about it that they could recommend. I would also ask what else could cause inflammation like that in a child that young and if they don't know I would ask why he wasn't recommending you go full out with a gluten free diet.

I'm sure your head is just completely spinning. When I get things that do that...I research. Doctor's hate that but it makes me feel better. I just try to make sure that I'm researching through good channels. There is a lot of information out there and not all of it makes sense.

 

I hope the doc can give you some clarification. These boards are a good resource full of people that have been through it all and also newbies like us that are also working through the head spinning and just want to offer other parents support because they know how they're feeling. It's scary and confusing and everything in between. Hugs to you and your little guy!
 

[justa]

I apologize. I did not mean to sound critical of you. We are here to help and support each other and I try to do that when I can.

I did mean to criticize your doctor though. It is difficult to go overboard with the gluten-free diet. It is much much more common for people to not cut gluten completely and then continue to suffer. Hidden sources of gluten can do a lot of damage. For example, soy sauce and worchestershire sauce have gluten. This winter I repeatedly, accidentally glutened myself with fries that had wheat starch on them, I slowly felt worse and worse until I figured it out. Some people get glutened in restaurants by eating gluten-free fries that were fried in oil recently used to fry battered (gluten) chicken fingers, or by eating gluten-free pizzas made in contaminated pizzeria kitchens.... Unfortunately, to reap the benefits of the gluten-free diet, one must be very vigilant.

When your doctor said to just cut out obvious sources of gluten, I believe he was doing you a disservice and misleading you about how strictly gluten-free one must be. Luckily you are educating yourself about celiac disease in order to best help your son. If your son had a less inquisitive parent, it is possible that he would have continued to get glutened and not get well, he is lucky you are learning how to help him.

In my earlier response, I forgot to mention nutrient testing. Most celiacs need higher doses of some vitamins due to deficiencies such as calcium, ferritin, iron, potassium, D, B12, zinc, and magnesium. If the doctor did not run those tests, you might want to consider ordering them.

Once again, i apologize. Best wishes.

I am not offended

I think this is equally as new and hurtful (sensitive) for me right now as it is frustrating to you and your knowledge base. If you get what I am saying.

I think my Pedi is just trying to have us do one month cutting out and then all out in a month from then on. I am calling his office and asking for clarification. 

If I don't respond - I only have one more "approved" post until it clears me... understandable but irritating haha when you are in the middle of a conversation and learning.

[kareng]

I am not offended

I think this is equally as new and hurtful (sensitive) for me right now as it is frustrating to you and your knowledge base. If you get what I am saying.

I think my Pedi is just trying to have us do one month cutting out and then all out in a month from then on. I am calling his office and asking for clarification. 

If I don't respond - I only have one more "approved" post until it clears me... understandable but irritating haha when you are in the middle of a conversation and learning.

 

 

You should see the crazy stuff people try to post.  Did you know you can buy credit cards and passports?  You don't seem like you are going to try to sell us counterfeit Nikes....but, we'll see.     (trying to make you smile)

 

Maybe what the ped wanted you to do was do the obvious gluten free stuff and when you have your appointment he/she will discuss tightening it up?  My GI actually said to me something like - you go gluten free and come back in 6 weeks and I'll laugh at your efforts.  I researched from reputable medical sites & long time posters on this site and found out he knew less than he thought he did.

[kpw31]

I'm awaiting endo results for my 5 year old, she went in on Wednesday. 

Mommy2krj, her symptoms and issues sound similar to your son's so I'm curious to see what we both find. 

 

Justa-just to clarify, the dr said there was inflammation? I hope this isn't a stupid question because I am new to all this as well but could the inflammation be due to something else?  I know my gi said they'd take biopsies to check for celiac but also for other types of allergies that can lead to inflammation in the digestive tract. I keep seeing things online about EGID could it be due to something like that?  because from what you said it sounds like the dr is unclear as to whether this is celiac or not.  Maybe he said to not go overboard because he would need to have gluten in his system for further testing?

[justa]

Honestly I am not sure. He said his tummy was clear but there was obvious inflammation of the intestines. He said he was almost positive it was Celiac. I don't know enough to argue this or what questions to be asked at the time so I said ok. He said call him back with further questions so I will do that. I was more relieved at the time.

 

I just don't know what to think. 

[mommy2krj]

Did he say if he did any biopsies? The inflammation of the intestines sounds like Celiac but again...I'm working on learning all this too.

I would definitely call and have him clarify his information to you. It's hard enough with some of these things when the doctor is full of good useful information....makes it a lot harder when they aren't giving you clear cut answers. Maybe he's waiting for the results of the biopsies? I know sometimes they can see the inflammation, though, from what I've read it's harder to see (generally) in young children and they have to wait for the results from the biopsies. So, hopefully that is what he was trying to tell you....just not in plain English.

[powerofpositivethinking]

i'm sorry you are going through this with your little one, but you're in the right place!  Did you son have the blood tests prior to the endoscopy?  If not, can you request the complete panel?

 

Complete Celiac Panel:

 

total iga-this is a control test that detects if you make enough IgA to validate the other IgA tests

DGP iga/igg (really great tests in young children)

ttg iga/igg

EMA

 

hope this helps!

[powerofpositivethinking]

also if you are able to get a written copy of the procedure and biopsy report you can post them here for others to look over

[kareng]

Its the weekend.  Why not just read a little about Celiac?  Write down questions for the next few days.  Don't do anything drastic.  Ease into gluten-free.  Maybe instead of graham crackers, you give him Cinnamon Chex.  Have grilled chicken, veggies and fruit for dinner...but skip the dinner rolls.  Don't analyze every ingredient but don't give him any of the obvious things.  Just for the next 2 or 3 days while you come to grips with this and are learning.

 

Its a shock and you need time to process it.  Then you will need time to learn about it.

[justa]

So I talked to him. I am sure this will get people going.

He said that 99% if the time he gives a yes or no answer, he says go all the way or not. He said my child is in the 1% and odd ball case he can not do that. His biopsy result was literally dead center and his bloodwork was dead borderline.

In children his age it is not always clear cut and time will tell with further testing. He has some clear cut signs of Celiac but also factors equally leading to severe allergy of another kind.

He said cut out all wheat but not go overboard by overanalyizing things like shampoo, utinsels and salt.

He said he needs allergy testing done. He now goes July 18th. He is going to an allergist that specializes in pediatric immunology also.

He said he rarely if ever has to have this phone call an everything I was reading is correct however about 1 in 500 children are undetermined for a bit.

Am I sounding totally nuts?

[justa]

He also said he did lots of biopsies and more than he does just looking for Celiac to rule out infection.

He said no infection was found.

Inflammation but no damage yet.

[Salax]

So I talked to him. I am sure this will get people going.

He said that 99% if the time he gives a yes or no answer, he says go all the way or not. He said my child is in the 1% and odd ball case he can not do that. His biopsy result was literally dead center and his bloodwork was dead borderline.

In children his age it is not always clear cut and time will tell with further testing. He has some clear cut signs of Celiac but also factors equally leading to severe allergy of another kind.

He said cut out all wheat but not go overboard by overanalyizing things like shampoo, utinsels and salt.

He said he needs allergy testing done. He now goes July 18th. He is going to an allergist that specializes in pediatric immunology also.

He said he rarely if ever has to have this phone call an everything I was reading is correct however about 1 in 500 children are undetermined for a bit.

Am I sounding totally nuts?

 

Interesting. And frustrating to you I am sure. It's been said time and time again around here... "it's celiac or it isn't, it's like either your pregnant or your not, you can't be sort of pregnant....just like you can't be sort of celiac" I am guessing he knows this but why his hesitation? I would do what Karen recommends and start there, perhaps additional testing will allow him to give an official diagnosis. Maybe in his mind he wants to be absolutely sure..... But I would hate to see it drag out for you and your little one. So, if it were me, I would definitely start removing things nice and slow and see if there is improvement. That's really the only way to know if gluten really is the problem. I hope it gets better soon for you and your little one.

[justa]

Salax- I think you nailed it. I think it is hard and like I said he told me he never has to make this phone call.. it is either "he is or isn't" I guess in some cases although rare it can happen.

Just like in a pregnancy you can be "pregnant" with a Molar pregnancy which isn't really a pregnancy just acts and mimics a pregnancy and the embryo is random unidentifiable tissues most time and was never a baby.