Soothing A Child After Accidental Glutening?

[ImaMiriam]

Hi Everyone,

 

My daughter was recently diagnosed and it's sooooo frustrating that the medical community has yet to address the many issues of our Celiac Community.

 

What do you do for your child after an accidental glutening? Here's our story:

 

My daughter is almost 12; she was diagnosed in April. As much as we are trying, we seem to keep eating gluten -- like once a week. Some weeks it's less and I think we went about 2-3 weeks in June or July without eating any. It's rarely more than cross-contamination, but it's enough to cause horrible symptoms:

 

Here's the way it tends to go:

 

1) notices that she feels bloated sometime soon after eating the food. she takes some medications for gas.

 

2) develops a bad "gluten taste" in her mouth

 

3) develops cold sores or canker sores in her mouth

 

4) horrible stomach aches. bowel movements are either very loose or hard little balls (constipation). For the stomach pain, one of the things we are trying is essential oils. I have doTerra "digestzen" and I'm thinking about trying some essential oils from Native American Nutritionals.

 

5) a few days after the gluten she gets horrible headaches, is very sensitive to light, and she wants to scream. (and sometimes she does scream) I give her advil as soon as the headache seems to be bad.

 

6) irritability

 

The symptoms last about a week.

 

WHAT are you doing for your child, what do you recommend for easing the way of a child during the week of gluten-response?

 

I welcome any suggestions and will also come back here to share some more stories of what we've done.

 

Thanks,
M 

[cyclinglady]

Going gluten free is tough on the whole family.  Have you read the newbie thread?  

 

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

 

This information is invaluable.  Also read up on how to avoid cross contamination in your kitchen:

 

Open Original Shared Link

 

To prevent contamination in my house, I tossed many things (plastic, wooden spoons, cutting boards, toaster, colander, and the entire house went gluten free!  Everyone eats gluten free except for my daughter and she gets to eat gluten when 1) she's out of the house or 2) it's pre-packaged and goes with her to school.  

 

I don't know of any "shortcuts" to help with recovery other than time and plenty of fluids.    I hope your daughter is feeling better soon.

[ImaMiriam]

Thanks for writing back, "Cycling Lady." I'm going to read the pages you recommended. At this point, it feels like a roller coaster ride...and I hate roller coasters! (I'm 53 and have only been on one roller coaster my whole life -- that was enough for me!)

 

For a few days/weeks, it seems like we are doing well....she feels good, has good energy, etc. Then we accidentally eat something, and she's miserable. And this is very difficult on all of us.

 

We've made our entire house gluten-free. From the way I'm feeling, and because of medical issues I've experienced in my life, I think I too may have Celiac. Because of current work commitments, I cannot take the time to be tested, but it's in my short term plans.

 

Is it sort of "normal" to have this experience of 2 steps forward, 1 step back, for someone with Celiac during the first few months or year(s) of gluten-free living? How long does it take to adjust? Do you reach a place of feeling more comfortable with gluten-free life?

 

I keep saying to myself that although the teeny tiny bit of gluten made my daughter feel horribly ill right now, we're on the path to recovery, the gluten is at least 90% out of her life, and she's healing even if she accidentally eats some. I keep trying to reassure myself that this is "ok" and is a part of the process.

 

What's your experience -- is it "normal" to have an adjustment period? What have you seen?

 

Thanks,

M

[cyclinglady]

I'm a little different because although I was only diagnosed in March, my husband has been gluten-free for years and I'm the cook in the family.  We did have plenty of gluten in our kitchen and I was careful not to cross contaminate anything.  However, we don't know if my husband has celiac disease or an intolerance (I think it's an intolerance).  He went off gluten at the advise of two medical doctors.   The first year he cheated a lot but by the end of that year he realized that every single time he ate gluten he felt awful.  It just wasn't worth eating gluten and suffering from all the symptoms.  

 

Since then, he's been faithful to the diet and gets only glutened outside the home.  

 

I was pretty much asymptomatic (just had Hashimotot's thyroid disease and anemia).  Went in for a routine colonoscopy (yeah, over 50) and the gastro thought I had Celiac.  What are the odds that both of us would have gluten issues?  So, giving up gluten at home was easy.  I converted most of my recipes over (except for bread).  And I provide my daughter with prepackaged gluten snacks that she takes to school.  I don't want any crumbs anywhere in my kitchen.  Even at parties (which I host), everything is gluten free on the buffet table.  Later, I might bring out some gluten desserts purchased from a bakery.  I clean up carefully afterwards too (hose down the patio!)  Next indoor party will get gluten-free completely.  I"m going to have to master gluten-free pumpkin pies by Thanksgiving and some dinner rolls.

 

I am recovering from a recent restaurant glutening.  It's day six and I'm still sick.  The longer you are away from gluten the more severe the reaction.  It took me initially seven weeks to start to feel good.  One meal and I'm completely set back.  I am concerned about the anemia and worst yet -- I fractured a vertebrae doing nothing, so my bones have been compromised because of celiac disease.

 

I urge you and your family to keep researching and seek out help (on this forum and local Celiac Groups and there are special ones for kids).  Besides the stomach issues, fatigue, irritability, inside your daughter her bones might not be forming well.  She needs every bit of nutrition and nourishment as her body starts to develop and mature.  Plus, she wants to feel good and have fun! (By the way, my daughter is 12).  Recovering from celiac disease takes anywhere up to three years.  I think it's much faster in children, so you have that going for you!  

 

But what you have described is normal.  It's a huge challenge to go gluten free.  It's so hard emotionally!  There's a grieving process for both you and your daughter and it takes time....to get through it.  I'm still grieving myself.  I hate looking at every label (must always keep my "readers" with me!).  Before if I made a mistake, I'd eat it and not my hubby!  I hate not being able to go out and grab a quick bite.  Planning meals is a drag as I've been doing it for 25 years.  Making sure I have safe food with me in case we go somewhere.  It's a hassle!  Not being able to ride my bike or run (my fracture). Hurtful comments made by family members who don't get it.  Meltdowns.  Yep, everyone on this forum has experienced this.  But, it gets better.....

 

I hope this helps!

 

Take care!

[dilettantesteph]

A hot water bottle on the stomach can be soothing.  Be patient with yourself.  It can take some time to learn all the intricacies of this diet.

 

The probiotic in Align has clinical studies to back it up and has helped my son.

[nvsmom]

L-Glutamine is thought to help with healing in the mucosal lining. It might be a helpful supplement to add.

Encourage extra sleep. She is recovering from an injury.

I can't imagine screaming from a severe headache - that would make mine hurt more. Could part of it be an anxiety thing? Would you consider homeopathic remedies to address nervousness and anxiety. It has helped my kids in past stressful circumstances.

Also, don't wait to give her pain relief with a headache. In my experience, once a migraine gets to a certain point, nothing will touch it. It is more helpful (to me) to start ibuprofen (Advil and Tylenol don't work great for me) when the headache is first starting to build.

Can you make her eating environment safer? If she is getting glutened every week, she might not heal. Autoantibodies don't stop being produced the moment she stops eating gluten. It tapers off over time and in some people, it can take months to years for the body to settle down after a diagnosis. I am over one year gluten-free and I still have elevated antibody levels. We don't know how your daughter's body reacts.

I think of gluten damage as a hole in the sand. Some have a deep hole with lots of damage and in others it is smaller. Every week that you are gluten-free, you can add another shovel full back into the hole but if you are glutened, you must take a shovel full out again... In your daughter's case, she has been glutened so much that her hole in the sand (damage) is not getting refilled much.

Can you make your house entirely gluten-free for her? Check all sauces, mixes, condiments, spices, and get rid of all baking ingredients, like bags of sugar or baking soda, that may have been contaminated with flour. Read every food label. Throw out cereals and give away noodles an bread. Wiped own your utensil drawers and throw out plastic damaged collanders, spatulas, and scratched TeflonOpen Original Shared Link frying pans. Get a new toaster too.

I am glad you have been trying to get her gluten-free but if she is getting sick every week or two, I am afraid you need to do more. She is getting hurt/sick so more needs to be done to protect her. I am sure you will get there soon.

Best wishes. I hope she is well soon.

[ImaMiriam]

Our house is totally gluten-free. I made the change in late April/early May. We are still learning this "path" and make mistakes ("to err is human" and IMHO, to eat gluten-free is complicated!) :-) The good news is that she says she definitely feels better overall...and she's gained a little weight and grown an inch taller.

 

She's definitely experiencing and expressing high levels of anxiety. I'm wondering now if she senses the head-ache coming and if that's why screams....sometimes she runs away from me, runs out of the house (barefoot onto our gravel driveway - OW!) or sometimes she just runs around the house. Sometimes she throws things. Then when she comes in (or if she doesn't run out) she wants to go under the bed because the light bothers her.

 

She used to be a very calm and happy child, so I'm struggling and confused.

 

I know what you mean about giving the medication BEFORE the headache, and I've been able to do that sometimes. And it works.

 

Any homeopathic remedies you can suggest for anxiety, I'd definitely be willing to try these, especially if you've seen any good results. We have been using "gasalia" for stomach symptoms, and she says it helps her.

 

I've also been trying some essential oils, which I think can be soothing.

 

To address another idea posted here, we have some beautiful heating pads (home-made with corn inside) that heat well in microwave and feel really good on sore muscles. So far, she does not like these for her tummy aches -- have tried them several times.

 

It's so helpful to hear that I'm not alone. I feel so frustrated and depressed and I'm trying to keep my chin up and be positive and upbeat for my family. Sometimes it's difficult (and impossible) to be the strong one. I've made an appointment to see social worker this week and hope to get on a once-a-week schedule starting this week or next week.

 

I read one of the posts above (the second one from cycling lady) to my daughter and husband at lunch time today and they were blown away. We feel so alone and isolated.

 

It doesn't help much to know that school is starting real soon (first day is Friday, 9/6). In some ways it'll be easier for me once she's back in school....and in some ways, I'm worried about how it will go, and I know she's anxious about starting school again because she's going to a new school.

 

Any other ideas or thoughts are much appreciated. 

[T.H.]

So sorry to hear your daughter is having such trouble!  My daughter was diagnosed when she was 11 - she's 15 now - and we went through the same thing. She was just getting sick over and over again. She also had that extreme heightened anxiety and/or panic attacks with crying and screaming sometimes, lots of stomach pain. She gets a little light and sound sensitive, but not to the extent it sounds like your daughter does.

 

One thing that turned out to be a big source of my daughter's contamination was her hands. She would touch everything in her environment and, not thinking about it, get her fingers on her food or her mouth before washing off.  When she practiced not touching her mouth before she washed her hands, or her food, it greatly decreased her contamination issues.  She ended up getting these little cotton gloves for a while, because when the cotton would touch her mouth, it was a strong reminder that she was touching her mouth and shouldn't be. She took them off when she had it down. Although every once in a while, she'll start to get lazy about it and then start getting sick again, and she wants the gloves for a few days to make sure she starts paying attention.

 

Pets were another issue, as they ate food with gluten and then would lick her face (and sometimes hit her lips there) or lick her hands. 

 

One word of caution - if your daughter continues to get glutened a lot, it can really affect her anxiety levels. My daughter just gets SO sick, and it was happening so often, that she got to the point where she didn't want to eat anything hardly at all because she was so worried about the food hurting her. That's been difficult to come back from; we're still having to urge her to eat, at this point.

 

Some simple teas can help the gut issues a little bit, like ginger or mint tea, made fresh. Aloe vera juice has been recommended to us by fellow celiacs who said it really calmed their guts down if they took some every few hours. Heat and cold never helped my daughter's stomach aches either. The tea helps a little, but nothing much worked on it. :-/

 

As for the anxiety, we started planning and have now things set up in advance, just in case there IS a glutening. We have a plan in place for things to help her if it happens. Music that is calming to her, a quiet room without whatever might upset her (like lights, in your daughters case). If your daughter needs to throw things, maybe soft things and a place she CAN throw them in. My daughter feels calmer with something that helps her block her senses, as she says. She got a soft piece of a velvety fabric and cut it into a strip, which she ties over her eyes as a blindfold. Uses certain music to block anything else from her sense of hearing. We have things she can do with her hands, like big, round seeds (very big) that she can roll between her fingers, or soft stuffed balls of leather or velvet or satin.  Anything that kind of gives her senses something to focus on so that it kind of cuts out whatever else could be impinging on her senses. Sometimes a warm or cold shower helps her, with music playing loud at the same time. 

 

And often, we try to track down something funny, as frequently as we can. Youtube videos, jokes, silly songs, funny movies, whatever - laughing actually releases endorphins, which can actually help her with her pain.  (Open Original Shared Link )

 

It is NOT perfect. It's still usually awful and we view it as something to survive, rather than making it better. But this does seem to make it so that she doesn't feel like she's going utterly crazy, I guess I'd say. It may be more like she's just hanging on by her fingernails, but before we did this, it was like she'd already fallen off the cliff and was completely losing it, if that makes sense. 

[cyclinglady]

So sorry to hear your daughter is having such trouble!  My daughter was diagnosed when she was 11 - she's 15 now - and we went through the same thing. She was just getting sick over and over again. She also had that extreme heightened anxiety and/or panic attacks with crying and screaming sometimes, lots of stomach pain. She gets a little light and sound sensitive, but not to the extent it sounds like your daughter does.

 

One thing that turned out to be a big source of my daughter's contamination was her hands. She would touch everything in her environment and, not thinking about it, get her fingers on her food or her mouth before washing off.  When she practiced not touching her mouth before she washed her hands, or her food, it greatly decreased her contamination issues.  She ended up getting these little cotton gloves for a while, because when the cotton would touch her mouth, it was a strong reminder that she was touching her mouth and shouldn't be. She took them off when she had it down. Although every once in a while, she'll start to get lazy about it and then start getting sick again, and she wants the gloves for a few days to make sure she starts paying attention.

 

Pets were another issue, as they ate food with gluten and then would lick her face (and sometimes hit her lips there) or lick her hands. 

 

One word of caution - if your daughter continues to get glutened a lot, it can really affect her anxiety levels. My daughter just gets SO sick, and it was happening so often, that she got to the point where she didn't want to eat anything hardly at all because she was so worried about the food hurting her. That's been difficult to come back from; we're still having to urge her to eat, at this point.

 

Some simple teas can help the gut issues a little bit, like ginger or mint tea, made fresh. Aloe vera juice has been recommended to us by fellow celiacs who said it really calmed their guts down if they took some every few hours. Heat and cold never helped my daughter's stomach aches either. The tea helps a little, but nothing much worked on it. :-/

 

As for the anxiety, we started planning and have now things set up in advance, just in case there IS a glutening. We have a plan in place for things to help her if it happens. Music that is calming to her, a quiet room without whatever might upset her (like lights, in your daughters case). If your daughter needs to throw things, maybe soft things and a place she CAN throw them in. My daughter feels calmer with something that helps her block her senses, as she says. She got a soft piece of a velvety fabric and cut it into a strip, which she ties over her eyes as a blindfold. Uses certain music to block anything else from her sense of hearing. We have things she can do with her hands, like big, round seeds (very big) that she can roll between her fingers, or soft stuffed balls of leather or velvet or satin.  Anything that kind of gives her senses something to focus on so that it kind of cuts out whatever else could be impinging on her senses. Sometimes a warm or cold shower helps her, with music playing loud at the same time. 

 

And often, we try to track down something funny, as frequently as we can. Youtube videos, jokes, silly songs, funny movies, whatever - laughing actually releases endorphins, which can actually help her with her pain.  (Open Original Shared Link )

 

It is NOT perfect. It's still usually awful and we view it as something to survive, rather than making it better. But this does seem to make it so that she doesn't feel like she's going utterly crazy, I guess I'd say. It may be more like she's just hanging on by her fingernails, but before we did this, it was like she'd already fallen off the cliff and was completely losing it, if that makes sense. 

I love the gloves idea!  

[nvsmom]

I'm glad your house is gluten-free. That will make it simpler as time goes on. If she is starting to feel better and growing, you are definitely on the right track. the diet probably just needs tweaking.  

 

We're in Canada so I don't know if you'll have the same homeopathic options up there. I have Sedatil by Boiron which is to help nervousness (hypersensitivity,irritiability due to stress) and it helps my oldest in stressful situations - he tends to get a bit wound up and has a hard time "coming down" which I attribute partially to mild Aspergers. Anyway, Sedatil is a combination of these remedies:

• Abrus precatoris (Jequirity) - 6C
• Aconitum napellus - 6C
• Belladonna - 6C
• Calendula officinalis - 6C
• Chelidonium majus - 6C
• Viburmim opulus - 6C

You could always try those remedies on their own. Each remedy is very specific to a set of symptoms and the individual so it might not help your daughter. If you do find it, remember that less is often better for homeopathic remedies. You can take it frequently (every hour or so) but take low doses like 6C, a 30C is not generally better... but I am not well educated in homeopathic medicine so you'll want to take what I say with a grain of salt. 

 

These are some introductory sites for you to look at if you are interested in self treating. Often a naturopath or homeopath will be of help when it comes to finding the proper remedy.

Open Original Shared Link

 

This site is is helpful too. If you look at headache, you'll see there are lots of symptoms to address. Click as many symptoms that apply.

Open Original Shared Link

 

Is part of her reaction to sickness possibly due to puberty and hormones? I have three younger boys, and don't know much of anything about raising girls, but I imagine that at age 12, her hormones could be affecting her behaviour.

 

Best wishes and good luck with school next week.

[ImaMiriam]

Hi again, All,

 

We are now "quiet" again here after a really tough morning. I'm so glad that I wrote here in the Forum, because I feel soooo muich better knowing that others struggle with this. And I hope we can keep writing to one another about this, as maybe we can together work toward a way to "make it better." I know what you're saying about "survive" it rather than make it better. (I'm quoting T.H.'s post.) It's terrible to realize that this is so bad. What kind of childhood is this, all this difficult pain? It breaks my heart to think about it.

 

Reading the post from T.H. was really really helpful -- THANK YOU. At this point, it is definitely about getting through it, and I love all your ideas -- gloves, and a plan. I've recently been talking with Rosa a lot about a plan for when this happens to her. I'm going to talk with her (if you don't mind) about the plan you have with your 15-year-old daughter.

 

I do believe that some of this is also hormonal.

 

And I also think that my response is important, and I'm exhausted. I broke my toe last Tuesday, and I'm so behind on my work responsibilities that I'm feeling a bit frenetic! (I work partly at home, except summers I'm mostly at home.)

 

We drink lots of tea. These are soothing. I'm trying to find ways to get her to drink more because I know that's important.

 

What gets me -- and I know I keep saying this -- is that the medical community seems to be unaware, uncaring, or unprepared regarding this aspect of childhood Celiac. And it's one of the most difficult aspects!

 

Here in US we also have Boiron homeopathic remedies, so I will definitely look for the one you mentioned, NVSMOM. How old is your son? Would this work (have you ever used it) if he comes home from school worried/stressed about homework/tests/school projects?

 

Thanks, All!

[nvsmom]

 

Here in US we also have Boiron homeopathic remedies, so I will definitely look for the one you mentioned, NVSMOM. How old is your son? Would this work (have you ever used it) if he comes home from school worried/stressed about homework/tests/school projects?

 

My son is 10, going on 11. We've used it going places he is nervous about or when he has things to do that he is less than confident on. It seems to help him keep his stress levels down to a low, or at least normal level. I actually use it in anticipation of a stressful event (dentist or new doctor) and it seems to help.

 

I hope things continue to improve and your foot feels better - ouch!

[tarnalberry]

You might also - at some point after you feel more confident about the gluten thing - look into whether or not she's getting migraines independently of the gluten.  I developed chronic migraines a few years after going gluten (and dairy) free.  They were more of a postural issue (working at a computer all day does a number on your neck!) and related to a few other things.  I worked with a chiropractor for a long time, and ended up on migraine preventatives, as *nothing* would stop the migraine once it occurred, outside of prescription migraine meds, and it would last for one to three days.

[ImaMiriam]

Hi Tarnalberry, All, thanks for writing back. I noticed in your response that you haven't had an endoscopy, and that you're a yoga teacher. Do you ever use yoga to help you with your migraines? Do you do head-stands? Somewhere (newspaper -- maybe you can google it) I read in the past 10 or more years that headstands can be bad for the head....

 

I ask about the yoga because natural approaches really appeal to me. Many years ago (1960s) my mom had a pinched nerve in her shoulder -- it was severe. Doctors wanted to operate and she started doing yoga and had a full healing through the yoga postures.

 

I would love to teach my daughter a healing yoga sequence, something she could do to release some of her anxiety. For her stomach aches, I often suggest that she lie in child's pose. She finds this helpful (we do this at bedtime and she's in bed) and I would love to use yoga with her. I just don't know where to begin, so if you have any suggestions, I'm all ears (or all eyes in this case).

 

I mention the endoscopy because I'm curious about that. So far I've refused to do this biopsy even though the doctors asked for this for my daughter. I believe that the invasiveness and the anesthesia would not be helpful for her right now. We've seen how much the gluten-free diet relieved her symptoms, and she also had positive blood test and she has one of the Celiac genes.

 

One other thing -- last week we ate some oatmeal for breakfast -- and she got nauseous from it. What I'm wondering is whether the protein the oatmeal caused a gluten-like reaction for her. We are cutting all oatmeal and I checked with GI who agrees this is a good idea for now.

[dilettantesteph]

You aren't alone.  My son was diagnosed at age 10 and he is now 16.  He is sensitive to very small amounts of gluten and it can be very difficult to find things that he can eat.  We encounter doubt about his condition everywhere we go.  Everyone knows someone with celiac disease who can eat all sorts of stuff.  Some doctors are terribly uneducated about celiac disease and instead of helping, they are condescending and upsetting.  Some schools were very difficult to deal with despite a very supportive pediatrician who will send notes galore.  One principal threatened to call social services since I wasn't sending my son in when he was throwing up.  They honestly wanted me to send him in when was throwing up repeatedly every morning.  His last year was terrible.  Since then, we found more food that he can eat that we can buy year around, and I am preserving like crazy the seasonal items this summer.  We are keeping a positive outlook on the next school year.

 

Let your daughter know that you are there for her and you will do everything in your power to help her.  Even when things are very difficult, they can be overcome.

 

By the way, we react to oats too.

[ImaMiriam]

You aren't alone.  My son was diagnosed at age 10 and he is now 16.  He is sensitive to very small amounts of gluten and it can be very difficult to find things that he can eat.  We encounter doubt about his condition everywhere we go.  Everyone knows someone with celiac disease who can eat all sorts of stuff.  Some doctors are terribly uneducated about celiac disease and instead of helping, they are condescending and upsetting.  Some schools were very difficult to deal with despite a very supportive pediatrician who will send notes galore.  One principal threatened to call social services since I wasn't sending my son in when he was throwing up.  They honestly wanted me to send him in when was throwing up repeatedly every morning.  His last year was terrible.  Since then, we found more food that he can eat that we can buy year around, and I am preserving like crazy the seasonal items this summer.  We are keeping a positive outlook on the next school year.

 

Let your daughter know that you are there for her and you will do everything in your power to help her.  Even when things are very difficult, they can be overcome.

 

By the way, we react to oats too.

 

About the oats -- is this the oats themselves, or is it cross-contamination? My daughter and I looked up the Bob's Red Mills rolled oats and found that they have a small amt (less than 20 ppm), and then we found another company (I can't remember the name right now!) that is a Celiac family. This other company guarantees their oats to be more "pure." I'm not sure if it's worth it to order these other oats to try them.

 

I'm so sorry to hear how badly school went last year for your son. Even though we've only been gluten-free since mid-April, I've already gotten some doubt and negativity from people. It took months to get my mom to understand, and even though she understands better now, her house doesn't seem "safe" for us to eat or to hang out. I'm hoping to keep working on that, because my daughter is very close to her.

 

My daughter is starting at a new school this year....and I'm worried. We are planning to meet with the guidance counselor next week, and I hope he will be able to understand Celiac and be a supportive person for my daughter. She worries about having good attendance, and would rather go to school and feel poorly than miss a day. We are lucky that she doesn't throw up, but her stomach aches (and headaches) can be severe.

 

Do you keep a food log? If you do (or if anyone else reading this does), can you suggest a way to do this that's easy?

[cyclinglady]

Some people (me, included) are sensitive for whatever reason to oats, even  if they are certified gluten free.  The same goes for quinoa and I love that stuff (w/chocolate and bananas!) I have gluten-free oats and quinoa stored in my freezer that I'm hoping to be able to eat in a few more months.  These grains don't bother my husband, but he's been gluten-free for 12 years.  

 

Like lactose, these gluten-free grains can be hard to digest until there's sufficient healing.

[dilettantesteph]

The avenin in oats is similar in structure to the gluten in wheat, barley and rye and some celiacs react to them in the same way.  Others can eat them without problems.  There has been some more recent research that suggests differences with different oat hybrids.  That likely made initial studies harder to interpret.  I think that more work needs to be done before we will have any clear answers.  When I tried certified gluten-free oats, I got sick so I will stay from them.  

 

Saying that they are pure and gluten free is the same as saying that they have under 20 ppm gluten.  That is how gluten-free has been defined by the FDA.  There is no assurance that the other company will have more pure oats than Bob's unless they have tested them to a lower detection limit.

 

The food log is really important, especially at first.  It is a pain and we weren't always good about it, but when illness strikes and you are trying to figure it out, it is very helpful.  It helps to keep the diet simple at first anyway with mainly single ingredient things like produce and unprocessed meats.  I wish you the best getting used to the diet.  

[ImaMiriam]

When you react to oats, is your reaction the same as to gluten? We've been eating A LOT of oats this summer (basically oatmeal cereals, but it's in some of the cookies/crackers we like).... my daughter has had a lot of nausea lately. She feels she was "glutened" and I'm thinking it was the oats.

 

The GI doctor said to definitely cut out the oats now, so they are "gone" and we'll be watching labels for them.

 

I'm hoping to have at least 2-3 months of true gluten-free healing time for her! She needs it, and so do I. It kills me to see her so uncomfortable. 

[dilettantesteph]

The oat reaction is more or less the same as the gluten reaction for us.

 

I hope you get things sorted out.  It is hard to watch your child suffer.  Once school starts it will be hard to know if there was some accidental contamination there, or if it is her diet.  Our experience was that it was usually diet related.  Be patient with yourself as you learn how to do this.

[ImaMiriam]

So, two days ago I found the Boiron remedy called "Sedatil" which I believe is the same as mentioned previously. I'm giving it to my daughter 3x daily as written on the box, and we'll see if it helps with her irritability.

 

Also, I spoke briefly yesterday with a nutritionist, whom I'd been hoping to work with. Unfortunately, my insurance says she's "out of network" which makes it potentially out of my financial ability. This nutritionist, recommended by the GI, seemed really knowledgeable.

 

I have to quote her on the oats (I paraphrase a little as I don't remember her exact words): "Celiac kids cannot eat oats grown here, because of cross-contamination." when I said to her that they were certified gluten-free, she said, "those are ok if you're gluten-free for a gourmet diet."

 

My daughter was thrilled to hear this. Even if, in the long run, it turns out that she is sensitive/reactive to the oats (and not the cross-contamination), at least she had some happiness yesterday! :-)

 

The gluten-free diet is trying -- maybe it's worse for me than for her -- but she misses certain gluten foods. I most miss being able to bake braided challah. I know how to make so many beautiful braids of challah bread, and now I cannot do it. My daughter misses my challah too. Although I found a decent gluten-free recipe, it is so far from the challah I used to bake.

 

Thank goodness for "Breads from Anna" bread mixes. Those are outstanding and we really enjoy her breads and muffins, and I believe they are much more nutritious than most other gluten-free breads. 

 

I do have to learn to be patient on this whole thing. I wrote a 504 Plan and will be meeting with guidance counselor on Tuesday. School starts on Friday!

[ImaMiriam]

You aren't alone.  My son was diagnosed at age 10 and he is now 16.  He is sensitive to very small amounts of gluten and it can be very difficult to find things that he can eat.  We encounter doubt about his condition everywhere we go.  Everyone knows someone with celiac disease who can eat all sorts of stuff.  Some doctors are terribly uneducated about celiac disease and instead of helping, they are condescending and upsetting.  Some schools were very difficult to deal with despite a very supportive pediatrician who will send notes galore.  One principal threatened to call social services since I wasn't sending my son in when he was throwing up.  They honestly wanted me to send him in when was throwing up repeatedly every morning.  His last year was terrible.  Since then, we found more food that he can eat that we can buy year around, and I am preserving like crazy the seasonal items this summer.  We are keeping a positive outlook on the next school year.

 

Let your daughter know that you are there for her and you will do everything in your power to help her.  Even when things are very difficult, they can be overcome.

 

By the way, we react to oats too.

Hi dilettantesteph, what foods are you preserving and freezing? This summer we picked peaches, blueberries, and raspberries, and I froze a lot of them already. I'm hoping to go apple picking (don't know how I can do this with a broken toe!) and will try to save apples too, maybe sliced and frozen (that's what I did with the peaches). Apples are much easier to buy during the winter, than these other fruits (and cheaper)....so I might not bother with freezing them.

 

I hate hearing about how the principal treated your son when he was so ill. That's dreadful! I'm going to give them a 504 Plan from the start, because I know how public schools can be sometimes.

 

[jepacar]

I love the gloves idea!  

Me too!!!

[ImaMiriam]

We had another rough night (last night) and day today. I know I can come here and sort of rant and rave a little. It's so frustrating, and at this point, I'm struggling to keep up with my job.

 

I sent a message to my daughter's GI doctor....although I like this doctor more than the first one we went to, I'm still really annoyed about how these doctors think/work. I hardly talk with the doctor, but she has a "patient portal" where I can send her messages.

 

My daughter has one of the 2 genes, she had a positive (only low positive) blood test, and she seems to be improving on a gluten-free diet. We do not want to do the endoscopy....and the GI doctor is again asking for it.

 

The doc says my daughter's symptoms are not "typical" and that she wants to do endoscopy, colonoscopy, and radiology. TOO much and too invasive! I like this doctor because she immediately proscribed probiotics, however I still am against these procedures in my daughter, partly because my daughter is still underweight, and because she's so anxious.

 

It seems that these tests have a potential negative result given that we've been gluten-free since May 1. Even though we have some accidental ingestion, it's way way way less gluten than she used to eat, and we are making slow, but steady progress in learning what not to eat.

 

This past week we learned not to drink certain teas, plus we also found out about spices and I got rid of all my old spices.

 

I'm exhausted and have hives on my back (possibly dermatitis herpetiformous???!!!) I have the same Celiac gene as my daughter! I'd like to go to the dermatologist to have a skin biopsy for Celiac! No time though. :-(

 

I am struggling to keep myself positive seeing how my daughter feels. I know it was gluten again, and I am trying so hard to be more vigilant or to figure it out, and it's so frustrating because I feel like I keep missing a detail.

 

I feel like I have the Celiac "brain fog" that I've read about here!!!

[cyclinglady]

 

It seems that these tests have a potential negative result given that we've been gluten-free since May 1. Even though we have some accidental ingestion, it's way way way less gluten than she used to eat, and we are making slow, but steady progress in learning what not to eat.

 

 

Sorry to hear that you've had a rough couple of days!

 

Just like getting oxygen on an airplane in an emergency, you have put it the mask on the adult first and then the child! Please take care of yourself (we moms are so bad at this)!

 

I just wanted to point out that at this point in your daughter's healing that the tiniest amounts of gluten can be magnified tens times over!  A little gluten now knocks me for a loop for seven days!  Before my dx, I had no symptoms other than a little anemia and I already had a genetic anemia.

 

Take care!