Newly Diagnosed -- 3 Year Old

[LHach]

Hello all --

I'm brand new to the boards here, and brand new to the disease. My 3-year-old had blood work done, and two days ago her screening came back very high for celiac -- I wasn't shocked, as she's so tiny, and had actually lost weight.

It's a little overwhelming now -- ALL this information, but I'm reading! We're just waiting for an appointment with a pediatric GI doc -- of course i couldn't get in for 5 weeks, which is WAY too long. My pediatrician is trying to speed that up, so hopefully Monday we'll have more information. Of course, due to my daughter's celiac and malabsorption issues, she's also anemic as well, which I know will correct itself once we get her on track -- we just can't wait another 5 weeks!

I'm in the Detroit area, so we'll be heading to Children's Hospital with the DMC. I have found a wealth of resources online and locally for stores that sell gluten-free products. I'm having trouble finding any support groups (even online ones) for parents of small children -- especially locally. Anyone here from Michigan?

Also -- what's difficult now is that we are NOT to change anything in her diet so as not to throw off the results when we see the GI specialist. It's very counterintuitive as a parent to continue feeding her gluten when you know that's what's causing her issues. Frustrating!

Any help/advice would be appreciated. I'm still learning, obviously, so I don't know if we'll switch everyone to gluten-free completely. I also have a 5-year-old daughter and an 18-month-old son. This is our first experience with any sort of food issue or health problem or auto-immune disease, so there's a steep learning curve here.

Thanks in advance for your advice --

Lori

[teresasupermom]

Hi, I'm in Michigan, but on the other side of the state. We are still kind of new to the celiac thing so I am hesitant to give too much advice. Hopefully your doctor can speed up the appt to the GI. I know we wound up putting my dd gluten free and then the GI doc had us put her back on gluten until we could get her biopsy done. It was only a couple of weeks, but it seemed like forever. I know some people choose not to do the biopsy and we really thought we wouldn't do it. I decided to have it done because if she didn't respond to the gluten free diet and was still sick I felt like having the biopsy done we'd know if there could be something else going along with the celiac.

We like you originally only thought we'd have to switch our dd with celiac over to gluten free and the rest of us would be fine eating gluten. For some people that works out, but for us it just isn't. My daughters numbers went down initially, but the last two checks have been up and she's been sick a lot again. It's been really tough switching the whole family gluten free. I really didn't think it would be that hard, but for us we've had to just change everything in the way we cook. For me, personally it's not such a big deal, but I have a house full of picky eaters so it's been very challenging. There are a lot of things that have gotten easier with time, but it will take some adjusting. I am not as good as some of the others with lists of ingredients to look at. I know what things have gluten in them now, but not so good at spitting out the long list of things to look for.

Adding a link to unsafe ingredient list - https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

That should help you out.

[curlyq]

I'm not in Michigan, but welcome! It definitely takes time adjusting (and even mourning!) to all of the dietary changes. My dd was diagnosed at the age of 6 last year, and my second daughter just tested pos at the age of 5. My recommendation would be to surround yourself with GOOD doctors who are knowledgeable about celiac. So many doctors simply don't know enough information, so the internet becomes a better educator than they are. Does R.O.C.K. have a chapter in your area?

[Darn210]

I'm not in Michigan, but welcome! It definitely takes time adjusting (and even mourning!) to all of the dietary changes. My dd was diagnosed at the age of 6 last year, and my second daughter just tested pos at the age of 5. My recommendation would be to surround yourself with GOOD doctors who are knowledgeable about celiac. So many doctors simply don't know enough information, so the internet becomes a better educator than they are. Does R.O.C.K. have a chapter in your area?

Welcome Lori,

Just in case you or anyone else reading along doesn't know: R.O.C.K. stands for Raising Our Celiac Kids. There's a chapter based in West Bloomfield. Here's an article and a list of chapters with contact info:

https://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html

[LHach]

Welcome Lori,

Just in case you or anyone else reading along doesn't know: R.O.C.K. stands for Raising Our Celiac Kids. There's a chapter based in West Bloomfield. Here's an article and a list of chapters with contact info:

https://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html

Thanks for the info, but unfortunately those details on the website are out of date. I called the woman who ran the West Bloomfield ROCK and she was VERY helpful, yet there really is no group. I called a woman from Macomb Township as well today, so we'll see about that group -- if it's still functioning. I'm willing to drive, but it would certainly be nice to have something close (I'm in the downriver area, south of Detroit).

Went to a great Gluten-Free Food Fair today at Hiller's Market in Plymouth, and also had great service and help at Total Health Foods in Wyandotte. A steep learning curve, and lots of info to process in the past 2 days!

[katrina16]

Thanks for the info, but unfortunately those details on the website are out of date. I called the woman who ran the West Bloomfield ROCK and she was VERY helpful, yet there really is no group. I called a woman from Macomb Township as well today, so we'll see about that group -- if it's still functioning. I'm willing to drive, but it would certainly be nice to have something close (I'm in the downriver area, south of Detroit).

Went to a great Gluten-Free Food Fair today at Hiller's Market in Plymouth, and also had great service and help at Total Health Foods in Wyandotte. A steep learning curve, and lots of info to process in the past 2 days!

I have exchanged email with the Macomb Twp., person and that group dismantled as well. too bad for me, as I live right next door in a neighboring city! I think one just started in the Ann Arbor area. I did purchase a book from Cecelias marketplace that has been a helpful guide at the regular grocery stores. I can't offer too much info as my 14 month old daughter was diagnosed last month. I just keep reading and reading to further educate myself and my family. Good luck!

[Cara in Boston]

We are in a similar situation. My 5 year old tested positive more than a month ago and it has been KILLING me to continue to feed him gluten while we wait for the next appointment (thankfully it is next week).

I just wanted to suggest you get the other family members tested NOW so you can start the process with them as well. In our house, I tested positive too so I was able to get in line for a follow-up visit earlier than if I had waited for all his tests to be done.

I spent the "waiting" time reading lots of books and trying out different products so that when it comes time to be 100% gluten free we will already know which bread we like and which pasta, etc. He has tried lots of the food and hasn't really noticed so I feel like the transition, when it finally happens, will be pretty easy.

Good luck -

Cara

[Kimmik95]

The waiting to meet with the GI and then have an endo done to confirm is the worst part because when your child has a chance of celiac disease, you know you can be hurting them by giving them gluten!

My son is 6 and was diagnosed in November 2010. We are about 90% gluten-free here. I have a 3 year old daughter and she loves her gluten The big thing I did was get rid of wheat flour. We use rice flour or a mix for about everything right now. I cleared out my pantry and fridge of anything that my son could have but might be contaminated. I replaced what I needed with items that were clearly gluten-free (like particular brands of mayo and dressing). I have a separate container for butter and peanut butter and everything else (jelly, ketchup, etc) we do squeeze bottle. We will probably start all using gluten-free pasta at this point. I had a bunch of wheat pasta that I finally used up. That's just a convenience thing.

The grocery shopping is the hardest thing because no you have to read every label every time. There are alot of things that are naturally gluten-free. Meat (but double check the broth on poultry), fruit, vegetables, ice cream, cheese, lunchmeats, bacons, eggs, certain brands of yogurt. Honestly, geting your house in line is the easiest part. Letting your child venture out into the world to eat is the hardest part! Just take it one step at a time. Feed her what she likes that you KNOW is gluten-free and start adding in other items. We pick up something new once a week or so for Chris to try. He could go without most things that are specialty gluten-free.

Hello all --

I'm brand new to the boards here, and brand new to the disease. My 3-year-old had blood work done, and two days ago her screening came back very high for celiac -- I wasn't shocked, as she's so tiny, and had actually lost weight.

It's a little overwhelming now -- ALL this information, but I'm reading! We're just waiting for an appointment with a pediatric GI doc -- of course i couldn't get in for 5 weeks, which is WAY too long. My pediatrician is trying to speed that up, so hopefully Monday we'll have more information. Of course, due to my daughter's celiac and malabsorption issues, she's also anemic as well, which I know will correct itself once we get her on track -- we just can't wait another 5 weeks!

I'm in the Detroit area, so we'll be heading to Children's Hospital with the DMC. I have found a wealth of resources online and locally for stores that sell gluten-free products. I'm having trouble finding any support groups (even online ones) for parents of small children -- especially locally. Anyone here from Michigan?

Also -- what's difficult now is that we are NOT to change anything in her diet so as not to throw off the results when we see the GI specialist. It's very counterintuitive as a parent to continue feeding her gluten when you know that's what's causing her issues. Frustrating!

Any help/advice would be appreciated. I'm still learning, obviously, so I don't know if we'll switch everyone to gluten-free completely. I also have a 5-year-old daughter and an 18-month-old son. This is our first experience with any sort of food issue or health problem or auto-immune disease, so there's a steep learning curve here.

Thanks in advance for your advice --

Lori

[T.H.]

Also -- what's difficult now is that we are NOT to change anything in her diet so as not to throw off the results when we see the GI specialist.

I'm not a doctor, at all, but honestly? You might want to dive into the research on getting the endoscopy done. You said "It's very counterintuitive as a parent to continue feeding her gluten when you know that's what's causing her issues." I think you hit the nail on the head. I didn't question it when I first ran into the concept, but then a number of people on here who refused to do that really changed my mind.

Basically, they asked the question: what is the purpose of this test? To see if it is Celiac Disease or not, or something else. If it's something else, will going gluten free invalidate the test for something else? Nope. If it's Celiac Disease and you just went gluten free, then you'd have a positive blood test, and a positive gluten trial at home when going gluten free had your child feeling better. An endoscopy would be a test to simply prove the results that you are already seeing: that gluten was bad for your little one.

So....if going gluten free fixed things, then why do we need the endo to prove that what we're seeing at home is true?

As an aside, some docs don't. Some will look at those two items and that is enough for them to diagnose. Or they will do an endo to double check for other problems, but accept the improvement on the gluten-free diet and the blood tests as conclusive of gluten intolerance or celiac disease (Because some schools are a pain without a doctor to back up your information). But it is possible to find doctors who pay attention and don't ask us to keep feeding something to our kiddoes that seem to hurt them.

And in cases like yours, with your little one so sick, it bothers me so much that doctors ask this of us. I do not think it is right, I really don't. It feels completely against the 'do no harm' principle, because there are other ways to figure out the problem. Yes, they may in part rely upon observation, but they can also have test results to back it up, like going gluten free and having the anemia eliminated, for example.

But to have us wait to take our kids off gluten, the doctors are suggesting that we continue doing something that may be harming our children. In fact, preliminary tests suggest keeping your little one on gluten IS harming your child, specifically. And this is in order to test if we need to do something that, whether or not the test was positive or negative, will do NO harm to our children because it is eliminating a nutritionally unnecessary ingredient from their food.

This isn't as though your child would be getting medication and the test decides that, you know? This is about a diet change. And going gluten free can be hard, it can be frustrating, and it can be expensive...but is it going to hurt your little one? Don't think so. But staying on gluten might.

I would seriously speak to the GI ASAP, if you can, and talk to them about other options, especially with such a little one who is already having such trouble. Studies on gluten have already discovered things like the fact that injecting a little bit of gluten into the inside cheek of a celiac will have the body reacting in measurable ways with an auto-immune response. Wish they'd do THAT test, instead, but I'm sure it's not an approved test, to date. Kind of like a skin prick test for Celiac Disease, eh? However, with stuff like that, I fully believe they will have other tests for Celiac Disease within the next 10-20 years that won't require what they put us through now.

There are a number of parents here who have faced the same choice and in the end decided to try the diet and ditch the endo. I did this with my son, who tested negative on the blood test, even. But when my father, myself, my brother, and my daughter all came back positive (most of us without symptoms, either. We just started testing after the diagnosis came back for me), well, we put my son on the gluten-free diet too.

He has emotional and physical problems that we had no idea were symptoms that went away. We did a gluten challenge a year later and just a few days on gluten he started having trouble again. We were convinced. If he had other issues that the diet didn't deal with, I would have done further testing, but gluten free or not gluten free - wouldn't have made a difference in finding OTHER issues.

Re: the rest of the family

However, if you decide to test, and if it's positive, or the gluten-free diet helps your little one's symptoms, it's recommended that you test everyone in the family for Celiac Disease every 3-5 years, or more often if you are noticing symptoms. The disease can trigger at any age, it can trigger silently but still be doing damage, and one negative test just means it hasn't triggered YET or it hasn't done enough damage to be detected by the tests. Also, any women should be tested before pregnancy, because it can often cause miscarriages and fertility problems in women.

If the biopsy is negative...

1) Children have false negative tests more often than adults do. They can have patchy damage rather than full damage everywhere in the intestines, which is harder to catch with a biopsy. Your GI should be doing multiple biopsies, 3-5 is what I hear. If he's not...time to get a doctor who knows what he's doing.

2) If the endo is negative, recent research is suggesting that you might want to put her on a test gluten-free diet anyway to see if it helps. A study on people with positive blood work but negative biopsies was finding that a significant number had similar metabolic problems to celiacs with positive biopsies. So they still needed to be gluten free. Another recent study on people with negative tests was a double blind placebo study (it's linked to in the research section here on the forums, I believe, in the last week or so) and showed that some people had symptoms eating gluten, but none of the gut damage associated with Celiac Disease. Some people refer to that as non-Celiac Gluten Intolerance, and it's been argued about whether it really exists or not. The study seems like a check mark in the 'exists' column, really.

Re: making everyone gluten free

Yeah, I'd just do it. Originally, before we were doing research, my son and husband continued eating gluten. It became SO stressful, I think primarily for the family with kids. It's very difficult for the kids to figure out cross-contamination and how much more often you have to wash your hands and have to be careful. My youngest was 8 at the time, and having gluten in the house was causing more stress and problems in the end than eliminating it would have, so even my husband went gluten free.

As an example, if someone opened a loaf of bread and got out a piece, then their hand was contaminated. They had to remember to wash their hand before closing the bag or opening and closing the cupboard door to put it back, or else the outside of the bag and possibly the cupboard door were contaminated (it spreads from the first couple of contacts, but you run out of gluten to spread around pretty quickly). But that just got horrid - you start thinking about what kids have touched, and when they last washed, and did they remember to wash their hand before they just stuck it in their mouth and what did it touch last...like I said: stressful.

It was very nice to think of having a completely safe environment to live in, after just a few weeks of this.

Things to think about after going gluten free:

- many art supplies have gluten, like some tempera paint powders, playdough, some glues, etc...

- Anything that goes in the mouth needs to not have gluten. So if shampoo ever gets washed over the mouth and gets swallowed a little, it needs to be gluten free. If bubble bath gets swallowed, mama's lipsticked lips or daddy's chapsticked lips get kissed, fingers with lotion get put in mouths - all needs to be gluten free. Toothpaste and flavored floss, those brushing tablets (the pink dyed ones), mouthwash - literally, anything that goes in the mouth. Including potentially dog and cat tongues if the midget get kisses that way, if the animal has gluten containing food.

- Any procedure you have done with your daughter, or anything she needs medicine for, try and plan ahead and see what the most likely medication will be, and find the gluten-free versions and make sure the pharmacy stocks it. I ended up without pain pills for three days because none of our local pharmacies stocked the gluten-free versions that I needed, and they couldn't get it in over the weekend by the time we went by the pharmacy. Sadly, most pharmacies are terrible at checking for gluten content of meds. One brand name or generic version can be gluten-free, but another brand name won't. And you pretty much need to ask every time if a med is gluten-free, and the pharmacist will typically not know and will have to call the company, and they are often closed by the time you need the call, so you may have to wait until the next day to find out. Even if it is on your daughter's record that she needs gluten-free meds, most of the time, the pharmacist won't check that before filling a prescription unless you ask. Sadly, same goes at the ER - double and triple check any medication she's being given. A website called www.glutenfreedrugs.com can be VERY helpful with that.

And some good news - basic foods are usually fine, as said before. Fruits and veggies, meats (although many luncheon meats have gluten), whole grains that are gluten free.

Oh, a note of caution - if/when you go gluten free, you probably want to avoid gluten-free oats for a while, too. Some 10-15% of Celiacs react to all oats just like wheat, even gluten-free ones, so it's easiest to avoid the oats altogether, and then add back in gluten-free oats once she's well to see if she can tolerate them.

[txplowgirl]

I'm not a doctor, at all, but honestly? You might want to dive into the research on getting the endoscopy done. You said "It's very counterintuitive as a parent to continue feeding her gluten when you know that's what's causing her issues." I think you hit the nail on the head. I didn't question it when I first ran into the concept, but then a number of people on here who refused to do that really changed my mind.

Basically, they asked the question: what is the purpose of this test? To see if it is Celiac Disease or not, or something else. If it's something else, will going gluten free invalidate the test for something else? Nope. If it's Celiac Disease and you just went gluten free, then you'd have a positive blood test, and a positive gluten trial at home when going gluten free had your child feeling better. An endoscopy would be a test to simply prove the results that you are already seeing: that gluten was bad for your little one.

So....if going gluten free fixed things, then why do we need the endo to prove that what we're seeing at home is true?

As an aside, some docs don't. Some will look at those two items and that is enough for them to diagnose. Or they will do an endo to double check for other problems, but accept the improvement on the gluten-free diet and the blood tests as conclusive of gluten intolerance or celiac disease (Because some schools are a pain without a doctor to back up your information). But it is possible to find doctors who pay attention and don't ask us to keep feeding something to our kiddoes that seem to hurt them.

And in cases like yours, with your little one so sick, it bothers me so much that doctors ask this of us. I do not think it is right, I really don't. It feels completely against the 'do no harm' principle, because there are other ways to figure out the problem. Yes, they may in part rely upon observation, but they can also have test results to back it up, like going gluten free and having the anemia eliminated, for example.

But to have us wait to take our kids off gluten, the doctors are suggesting that we continue doing something that may be harming our children. In fact, preliminary tests suggest keeping your little one on gluten IS harming your child, specifically. And this is in order to test if we need to do something that, whether or not the test was positive or negative, will do NO harm to our children because it is eliminating a nutritionally unnecessary ingredient from their food.

This isn't as though your child would be getting medication and the test decides that, you know? This is about a diet change. And going gluten free can be hard, it can be frustrating, and it can be expensive...but is it going to hurt your little one? Don't think so. But staying on gluten might.

I would seriously speak to the GI ASAP, if you can, and talk to them about other options, especially with such a little one who is already having such trouble. Studies on gluten have already discovered things like the fact that injecting a little bit of gluten into the inside cheek of a celiac will have the body reacting in measurable ways with an auto-immune response. Wish they'd do THAT test, instead, but I'm sure it's not an approved test, to date. Kind of like a skin prick test for Celiac Disease, eh? However, with stuff like that, I fully believe they will have other tests for Celiac Disease within the next 10-20 years that won't require what they put us through now.

There are a number of parents here who have faced the same choice and in the end decided to try the diet and ditch the endo. I did this with my son, who tested negative on the blood test, even. But when my father, myself, my brother, and my daughter all came back positive (most of us without symptoms, either. We just started testing after the diagnosis came back for me), well, we put my son on the gluten-free diet too.

He has emotional and physical problems that we had no idea were symptoms that went away. We did a gluten challenge a year later and just a few days on gluten he started having trouble again. We were convinced. If he had other issues that the diet didn't deal with, I would have done further testing, but gluten free or not gluten free - wouldn't have made a difference in finding OTHER issues.

Re: the rest of the family

However, if you decide to test, and if it's positive, or the gluten-free diet helps your little one's symptoms, it's recommended that you test everyone in the family for Celiac Disease every 3-5 years, or more often if you are noticing symptoms. The disease can trigger at any age, it can trigger silently but still be doing damage, and one negative test just means it hasn't triggered YET or it hasn't done enough damage to be detected by the tests. Also, any women should be tested before pregnancy, because it can often cause miscarriages and fertility problems in women.

If the biopsy is negative...

1) Children have false negative tests more often than adults do. They can have patchy damage rather than full damage everywhere in the intestines, which is harder to catch with a biopsy. Your GI should be doing multiple biopsies, 3-5 is what I hear. If he's not...time to get a doctor who knows what he's doing.

2) If the endo is negative, recent research is suggesting that you might want to put her on a test gluten-free diet anyway to see if it helps. A study on people with positive blood work but negative biopsies was finding that a significant number had similar metabolic problems to celiacs with positive biopsies. So they still needed to be gluten free. Another recent study on people with negative tests was a double blind placebo study (it's linked to in the research section here on the forums, I believe, in the last week or so) and showed that some people had symptoms eating gluten, but none of the gut damage associated with Celiac Disease. Some people refer to that as non-Celiac Gluten Intolerance, and it's been argued about whether it really exists or not. The study seems like a check mark in the 'exists' column, really.

Re: making everyone gluten free

Yeah, I'd just do it. Originally, before we were doing research, my son and husband continued eating gluten. It became SO stressful, I think primarily for the family with kids. It's very difficult for the kids to figure out cross-contamination and how much more often you have to wash your hands and have to be careful. My youngest was 8 at the time, and having gluten in the house was causing more stress and problems in the end than eliminating it would have, so even my husband went gluten free.

As an example, if someone opened a loaf of bread and got out a piece, then their hand was contaminated. They had to remember to wash their hand before closing the bag or opening and closing the cupboard door to put it back, or else the outside of the bag and possibly the cupboard door were contaminated (it spreads from the first couple of contacts, but you run out of gluten to spread around pretty quickly). But that just got horrid - you start thinking about what kids have touched, and when they last washed, and did they remember to wash their hand before they just stuck it in their mouth and what did it touch last...like I said: stressful.

It was very nice to think of having a completely safe environment to live in, after just a few weeks of this.

Things to think about after going gluten free:

- many art supplies have gluten, like some tempera paint powders, playdough, some glues, etc...

- Anything that goes in the mouth needs to not have gluten. So if shampoo ever gets washed over the mouth and gets swallowed a little, it needs to be gluten free. If bubble bath gets swallowed, mama's lipsticked lips or daddy's chapsticked lips get kissed, fingers with lotion get put in mouths - all needs to be gluten free. Toothpaste and flavored floss, those brushing tablets (the pink dyed ones), mouthwash - literally, anything that goes in the mouth. Including potentially dog and cat tongues if the midget get kisses that way, if the animal has gluten containing food.

- Any procedure you have done with your daughter, or anything she needs medicine for, try and plan ahead and see what the most likely medication will be, and find the gluten-free versions and make sure the pharmacy stocks it. I ended up without pain pills for three days because none of our local pharmacies stocked the gluten-free versions that I needed, and they couldn't get it in over the weekend by the time we went by the pharmacy. Sadly, most pharmacies are terrible at checking for gluten content of meds. One brand name or generic version can be gluten-free, but another brand name won't. And you pretty much need to ask every time if a med is gluten-free, and the pharmacist will typically not know and will have to call the company, and they are often closed by the time you need the call, so you may have to wait until the next day to find out. Even if it is on your daughter's record that she needs gluten-free meds, most of the time, the pharmacist won't check that before filling a prescription unless you ask. Sadly, same goes at the ER - double and triple check any medication she's being given. A website called www.glutenfreedrugs.com can be VERY helpful with that.

And some good news - basic foods are usually fine, as said before. Fruits and veggies, meats (although many luncheon meats have gluten), whole grains that are gluten free.

Oh, a note of caution - if/when you go gluten free, you probably want to avoid gluten-free oats for a while, too. Some 10-15% of Celiacs react to all oats just like wheat, even gluten-free ones, so it's easiest to avoid the oats altogether, and then add back in gluten-free oats once she's well to see if she can tolerate them.

Wow, really good post, couldn't have said it better myself.

[mommida]

I'm from Mi too. I'm by the Palace of Auburn Hills, were the Pistons play for now at least! Kroger and Meijer have been adding more gluten free products in the stores. If you are close to Hillers, you are very lucky. I heard they have Celiacs in the family and are very aware of gluten free and the need for information.

If you talk to the ped. gastro. ask what the endoscopy with biopsy is being done for. It is to investigate what is happening and the amount of damage is there.

Unfortunately the symptoms for Celiac and a lot of other disorders are the same. Removing gluten from the diet may even make symptoms from a non- Celiac better.

It is really hard to make these decisions when you just want your little one to feel better.