7 Year old - Positive Testing

[Sergio Astorino]

I am new to Celiac as I have been diagnosed myself since maybe 2 months.  I had the kids tested and found that one of my boys tested positive and his blood work came higher than normal.  We are going through the process now to repeat the test and then depending on results, maybe endoscopy.  I feel terrible that he may have this and feel guilty.  I don't want him to do the endoscopy as they need to put him to sleep.  I don't want him to feel different that all his friends at school.  Any suggestions?  Is this a normal reaction?

[cyclinglady]

2 hours ago, Sergio Astorino said:

I am new to Celiac as I have been diagnosed myself since maybe 2 months.  I had the kids tested and found that one of my boys tested positive and his blood work came higher than normal.  We are going through the process now to repeat the test and then depending on results, maybe endoscopy.  I feel terrible that he may have this and feel guilty.  I don't want him to do the endoscopy as they need to put him to sleep.  I don't want him to feel different that all his friends at school.  Any suggestions?  Is this a normal reaction?

Yes, you are reacting like any normal parent.  There is nothing that you can do about passing on your genes associated with celiac disease to your children.  

I was out for both my endoscopies.  It is not an issue, but I get the worry.  I worried about sedating my dog in order to get her teeth cleaned. I still worry about my kid.  I worry less about celiac disease and more about other Autoimmune Disorders that run rampant on both sides of our families.    Talk to the GI about your concerns.  

The best thing you can do for your son is to teach him how to keep himself safe and healthy and to demonstrate that he can live his life like everyone else.  

Research.  The more you know, the better you will both be!  

Hang in there.  

[Tablespoon8]

My 7 year old daughter was diagnosed 5 weeks ago. While  i’m glad to have an answer to her stomach aches, she is still having symptoms even after going gluten free for those five weeks and also being on different medications. Her mood swings can be hard to deal with and sometimes I feel like my husband just feels like she’s being a brat or uncooperative when I feel like it’s more to do with what the disease is doing to her body. I am also eight months pregnant and so everything feels very overwhelming especially when I feel like I can’t help her when she is in pain. I thought that going gluten-free would eliminate the stomachaches but that has not happened yet. I joined this site today to hopefully get some support and advice as far is dealing with moodiness and symptoms. Maybe it’s just too early to see results? I hate to keep adding medication but not sure what the right answer is. 

[cyclinglady]

10 minutes ago, Tablespoon8 said:

My 7 year old daughter was diagnosed 5 weeks ago. While  i’m glad to have an answer to her stomach aches, she is still having symptoms even after going gluten free for those five weeks and also being on different medications. Her mood swings can be hard to deal with and sometimes I feel like my husband just feels like she’s being a brat or uncooperative when I feel like it’s more to do with what the disease is doing to her body. I am also eight months pregnant and so everything feels very overwhelming especially when I feel like I can’t help her when she is in pain. I thought that going gluten-free would eliminate the stomachaches but that has not happened yet. I joined this site today to hopefully get some support and advice as far is dealing with moodiness and symptoms. Maybe it’s just too early to see results? I hate to keep adding medication but not sure what the right answer is. 

Hi!

Five weeks into the diet is way to early to heal.  The learning curve for the diet is very steep.  Dietary mistakes are made in the beginning.    Most members take months or  a year or two to really feel better, most often due to other co-existing conditions impacted by celiac disease which goes way beyond the GI tract.  

Depression, anxiety, mood swings are all common with celiacs.  This can be due to actual gluten and just the sheer frustration of dealing with gluten-free every single day.  With healing this usually resolves.

Read through the Newbie 101 thread pinned at the top of the Coping section of the forum.  

Quick tips:

1) Eliminate dairy for a while as most celiacs are lactose intolerant due to intestinal damage

2) Do not eat out until she feels better

3) Avoid processed foods as much as possible as she may react to a gluten-free additive.  Not a celiac reaction but does she need more tummy aches?

4) get a 504 plan in place to keep her safe at school (e.g. Play Doh contains wheat).  

5) get tested.  All first-degree relatives even if you have no symptoms!  

Be involved.  Ask questions.  We are here to help!  

[frieze]

dad needs to step up his parenting game for at least the next 6 months.  some extended family help would not hurt.  second the 504 plan.  you are sending lunches with, yes?  she can not eat anything provided in the school without you checking it out.

[Tablespoon8]

My husband does help pack lunches and is careful when they are out places like the pumpkin patch etc. I just feel like he doubts her pain when she says she has stomach aches especially right before bedtime. But that’s how her symptoms have always been. For months we chalked it up to her just trying to avoid bedtime until I finally decided to have some testing done. She never had any other symptoms other than tummy aches. I think we both thought that by going gluten free all symptoms would be resolved and apparently we are not being patient enough. It’s just so hard when you’re child is in pain. 

The school does offer a gluten free option and so far it seems to be working out ok. But maybe we shouldn’t trust it? It’s just so hard to know what’s right and wrong. The nutritionist at her dr office told us if the package says gluten free than it’s ok to eat. But, I’ve read many other celiac patients saying that’s not the case. Feeling frustrated.... ?

[Sergio Astorino]

Be careful.  I phoned the place that provides hot lunch and although they provide gluten free options, they cannot guarantee there is no cross-contamination.  If it is not a gluten free facility....be careful.  I am new to this as well and feel guilty. 

[frieze]

8 minutes ago, Tablespoon8 said:

My husband does help pack lunches and is careful when they are out places like the pumpkin patch etc. I just feel like he doubts her pain when she says she has stomach aches especially right before bedtime. But that’s how her symptoms have always been. For months we chalked it up to her just trying to avoid bedtime until I finally decided to have some testing done. She never had any other symptoms other than tummy aches. I think we both thought that by going gluten free all symptoms would be resolved and apparently we are not being patient enough. It’s just so hard when you’re child is in pain. 

The school does offer a gluten free option and so far it seems to be working out ok. But maybe we shouldn’t trust it? It’s just so hard to know what’s right and wrong. The nutritionist at her dr office told us if the package says gluten free than it’s ok to eat. But, I’ve read many other celiac patients saying that’s not the case. Feeling frustrated.... ?

the nutritionist is wrong, gluten free labeling means under 20 parts per mil.  you will not know if she is super sensitive till she has been absolutely gluten free for a long while.  no gluten free goodies either.  you all need to be tested: mom, dad, and sibs.

[Tablespoon8]

2 minutes ago, Sergio Astorino said:

Be careful.  I phoned the place that provides hot lunch and although they provide gluten free options, they cannot guarantee there is no cross-contamination.  If it is not a gluten free facility....be careful.  I am new to this as well and feel guilty. 

You’re right, they did confirm they couldn’t guarantee no cross contamination. My 7 year old is such a picky eater too, it seems impossible to avoid the gluten free alternative foods like bread, muffins, pizza etc. Or eliminating dairy. Ugh! I just need to take it one day at a time. Sometimes reading things online makes me feel like we will never be out of the woods and it will always be a struggle ?

[Sergio Astorino]

I know what you are feeling as I am going through this now.  I feel bad that he may need to go his whole life avoiding this but on the other hand, they will be fine.  My friend's daughter was diagnosed at 19 months and in just a few months, she gained weight and looks amazing.  Hang in there as we are all in this together.  Anytime you need to vent.....I find everyone on this site is just incredible.  Thank you to everyone and slowly, things will be better. 

[frieze]

try to turn it around.  you have been given a gift of fairly early dx.  you kids have the chance to grow to normal size and function, and avoid some of the more common behavioural issues.

[Beverage]

Are you cooking or using gluten in your kitchen?  I didn't feel better until we cut it out completely from the kitchen.  I let my boyfriend have a gluten beer at the table, but nothing more.  We tried marking condiment jars in the fridge but mistakes happened, too easy to dip into that mayo after touching gluten bread.  He was trying to be super careful, his intentions very sincere, but after finding a crumb of gluten bread on the counter when he thought it was spotless, we banned it completely.  He does have some gluten bread next to a sink in the basement/garage where he can take down sandwich makings and eat it down there.  He also has a toaster down there so the one in the kitchen can be gluten free.  But it was too dang hard and stressful, me watching him every second for that one wrong move, and even when trying to be careful, that wrong move happens.  Not to mention touching the cabinet knobs and other things after touching the bread.  Very very hard to not contaminate the kitchen.  

[moonston3]

hi all 

ive just been reading hese posts and was looking for info on this coeliac/ Celiac Disease

my son is  and he has had a picky diet since he was around 2. he hadnt eaten proper foods for around 3 years just lived off yoghurts. he used to have the normal baby foods and our home made dinners he was fine with them but went off them.

he has been in and out of doctors and hospital to see dieticians and specialists.

he has soling accidents alot but this has reduced but it starts up again. accidents at school and home but he has been going to the toilet when he feels he needs to but most of the time he is unaware that he needs to go and does it in his pants.

the past 18 month plus he has been eating alot more of our foods like chips pizzas chicken dippers different biscuits different chocolate bars different foods peas sweetcorn.

school have been brilliant with him and introduce different foods such as chicken pie lasagna spaghetti bolognese but he wont eat this at home. 

he is on movicol and sodium feretadate medication as iron is low and he gets blocked up every week.

last month had an appointment with specialist and had his bloods taken 

then yesterday the 11th dec 2018 his specialist called me and updated me that there was a small trace of coeliac in his bloods.

its taken us 4 years to get him to eat normal foods and now this has been sprung upon us and now we may need to change his whole food diet again and start from scratch fells like the last 4 years of hard work has been taken away

and we may need to start again

he is a fussy eater as it is and this is going to be even harder to feed him the gluten free foods.

we get another blood test taken in feb 2019 to find out for sure then posibly admittance to hospital and a biopsy 

any advice would be gratefull from parents who have gone or are going through this with their child as it has just put another strain on his food eating 

[cyclinglady]

4 hours ago, moonston3 said:

hi all 

ive just been reading hese posts and was looking for info on this coeliac/ Celiac Disease

my son is  and he has had a picky diet since he was around 2. he hadnt eaten proper foods for around 3 years just lived off yoghurts. he used to have the normal baby foods and our home made dinners he was fine with them but went off them.

he has been in and out of doctors and hospital to see dieticians and specialists.

he has soling accidents alot but this has reduced but it starts up again. accidents at school and home but he has been going to the toilet when he feels he needs to but most of the time he is unaware that he needs to go and does it in his pants.

the past 18 month plus he has been eating alot more of our foods like chips pizzas chicken dippers different biscuits different chocolate bars different foods peas sweetcorn.

school have been brilliant with him and introduce different foods such as chicken pie lasagna spaghetti bolognese but he wont eat this at home. 

he is on movicol and sodium feretadate medication as iron is low and he gets blocked up every week.

last month had an appointment with specialist and had his bloods taken 

then yesterday the 11th dec 2018 his specialist called me and updated me that there was a small trace of coeliac in his bloods.

its taken us 4 years to get him to eat normal foods and now this has been sprung upon us and now we may need to change his whole food diet again and start from scratch fells like the last 4 years of hard work has been taken away

and we may need to start again

he is a fussy eater as it is and this is going to be even harder to feed him the gluten free foods.

we get another blood test taken in feb 2019 to find out for sure then posibly admittance to hospital and a biopsy 

any advice would be gratefull from parents who have gone or are going through this with their child as it has just put another strain on his food eating 

I am sorry that you have been struggling with your son’s health issues.  While you are concerned about a celiac diagnosis and the possibility of having to put him on a gluten free diet, you might have discovered the root cause of all your son’s issues.  All the things you have described, have occurred with other children within the forum.  Please take the time to read through the children’s section of the forum.  

 Keep your son on a full gluten diet until all celiac testing is done.  This is critical in getting a proper diagnosis.  Insist on the full celiac panel.  Smaller children often test better on the DGP.  

Use the search box and try words like “soiling”, “picky eater” and you will find many posts about shared symptoms.  

I wish you all well.  

Edited December 11, 2018 by cyclinglady