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Newly Diagnosed -- 3 Year Old


LHach

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LHach Newbie

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


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teresasupermom Rookie

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 Newbie

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 Enthusiast

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 Newbie

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! :)

  • 1 month later...
katrina16 Newbie

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 Enthusiast

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


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Kimmik95 Rookie

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. Community Regular

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 Enthusiast

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 Enthusiast

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.

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      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
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