My Daughter was Glutened. Confused by what she ate?

[Mermaid's Mom]

I know everyone reacts differently...but in the past 6 weeks that we have been gluten-free she has been Glutened a few times (2-3) and we were able to figure out what it was.   This time I can't figure it out.  She was fine yesterday (day) but in the evening we noticed the fatigue settle in.  The fatigue has been non-existent for weeks but we have lived with it for 3 years so I recognize even the subtle signs.  Before bed she went into the bathroom and I knew.  I asked if she was OK and she mumbled something.  I asked if she was glutened and she said "I think so".

When she got out we tried to tease out what she ingested.  She said she actually woke up the day before (Monday) with stomach pain.  And she said "I have been feeling tired".  Add to that the fact that on Sunday I commented that her hearing was bad again - she has CAPD that seem to REALLY improve once she went gluten-free but this weekend she was awful.

So Friday was a Holiday and I cannot think of anything different she ate.

Sat was a neighborhood Easter party (I was not there) but she says she didn't eat anything and all moms knew to look out for any issues.  She is not the type to lie NOR does she want to eat Gluten.

Sun was Easter and it was HARD to find Easter chocolate eggs that were certified gluten-free.  I bought the only ones I could find that were clean, simple chocolate with no questionable ingredients.  I knew she might eat one or two but then be over it.  She isn't a sweet tooth.  Oh and she is now eating dairy randomly with ZERO issues so I was not worried about the dairy aspect. According to her she may have eating 2-3 eggs.  I ate substantially more and I am fine.

Sunday was really the BEST day she has had in forever.  She was doing cartwheels (something she was neurologically unable to coordinate for years) and had a great spirit and energy all day.

Monday she says she woke with stomach pains and I admit she was pretty low key all day but not anything alarming at the time.

Tues she went to school fine and seemed fine after.  She really didn't crash until 6pm last night.

My gut says it isn't the chocolate - though it seems like the logical culprit - and I am worried that she is eating small amounts of  something on a reg basis (like maple syrup for ex) and it is getting past me!  Any thoughts?  Do you think it is just the chocolate?  And how far back do you go in this case typically?  Meaning how many days could pass after eating something before it bothers you?

[Ennis-TX]

Hmm could be the chocolate, I would try rotating her off the dairy chocolate (Enjoy Life and Gerbs make dairy free). I personally feel fatigued with even lactose free dairy products due to issues withe it in general. See how she feels in a few days then perhaps try it again. And boom you might find your culprit give a few days on and few days off completely for the body to adjust (48-72 hours) I find to be about it for intolerance. Now if it is gluten it could take a week for it to wean off, now is there anything new in her diet? Check the food journal and see, perhaps something is contaminated or perhaps she is just a tad sick with bug. This disease can be a roller coaster for sure, you just got to take a step back and experiment....seems to be daily for me, like did I eat too much of that, was that contaminated, did I not get enough of said nutrient. Pretty much up and down trying to stay in that perfect balance and enjoy life.

PS why would Maple syrup be a maybe issue? Does she have issues with it? I know Coombs Maple syrup is gluten-free, Nature Hollow and waldens make a sugar free and gluten-free version.

[Mermaid's Mom]

No I just used maple syrup as an example! LOL!

BUT...you may have hit on something!  I am sick.  Really sick with a bad head cold.  My husband and I both went to bed Sunday with sore throats and he woke fine and I woke sick as a dog!  Yesterday she woke and said she had a sore throat.  But like her father she said hers went away.  But maybe she just has my germs to a lesser extent and is just not feeling great?

There is NOTHING  new in her diet.  And anything new I bring in is Certified gluten-free.  I no longer (other than the choc eggs) just look for safe ingredients.  Maybe one day but for now - nope.  The only other "gray" time in space is that Easter party.  She did say she ate the chips and that a mom googled and confirmed that brand was fine but I am aware that she could have easily been cross contaminated.  It was a lot of kids. 

Thanks!!

[Mermaid's Mom]

I think its Cheerios!  We have had them for months but she wasn't eating them because we were avoiding oats and dairy.  We lifted the dairy and oats restriction and dairy was not an issue though she has not had oats since we started going gluten-free. 

Over the past 4-5 days she started eating the gluten-free cheerios.  Because they say gluten-free it never occurred to me that they could be the issue (though I am aware of the cheerio controversy) but now I think its the oats. 

[Ennis-TX]

Probably is, as mentioned before, it is not just the oats with cheerios, the gluten-free oat sorting method...is mechanical, as in when separating the oats from random wheat grain contamination it just moves the grains out, they still touched....they were still mixed, This leads to random hot spots in batches where the gluten content can be above 20ppm. GFwatchdog even did testing that showed the spottiness between lot numbers with them. Bottom line they are gluten-free for health fanatics not the medical community.

Try Van's O cereal and see how that works, I keep their strawberry O one for a friend who sometimes stays over.  Few other company make some nice rice, coconut flake, etc. cereals. Or you can try sweet versions of rice gruel/porridge, quinoa, or creamed buckwheat(tech not even a grain more related to rhubarb). I personally like creamy coconut, almond, porridge with no grains. Even found a nice konjac flour that thickens them up wonderfully.

[Mermaid's Mom]

Thanks!  After I typed my last post I remembered that last night at bed time I had to vacuum a mess off her floor and she clamped her hands over her ears in "pain" this was an everyday occurrence/reaction to noise before going gluten-free but something she hasn't done in weeks!  Now I feel like the 4-5 bowls of Cheerios over the past 5-6 days have had a gradual effect on her and not the obvious gluten reaction that we have seen in the past. 

We have Chex cereal that she also like but I will check out those other brands you mentioned also!  Thanks!

[Ennis-TX]

Open Original Shared Link

Also check out Julian bakery for grain free options of granola, cheese, bread, wraps, These can all be ordered on amazon  even Vans stuff so you can get them even if not in the stores....Yeah I found the cheese odd, not quite right but the fact they ship it to me and no need to go get it in the city saves me alot.

[Mermaid's Mom]

Just now, Ennis_TX said:

Open Original Shared Link

Also check out Julian bakery for grain free options of granola, cheese, bread, wraps, These can all be ordered on amazon  even Vans stuff so you can get them even if not in the stores....Yeah I found the cheese odd, not quite right but the fact they ship it to me and no need to go get it in the city saves me alot.

Awesome!  Thanks!

[knitty kitty]

Hi, Mermaid's Mom and Ennis!

I gotta disagree here.  I don't think it's just the oats in the Cheerios causing problems.  I think it's the corn starch in the Cheerios.  

I had reactions to Cheerios, but I can eat certified gluten free oats just fine.  It's the corn starch component that I have a problem with.  I have a reaction to corn and gluten free stuff made with corn ingredients.  

Seems that corn has stuff (prolamins and peptides) in it that can trigger reactions in some Celiacs just like wheat gluten does. 

Open Original Shared Link

Open Original Shared Link

And then there's the food additive transglutaminase that will trigger reactions, too.  Transglutaminase is used to improve texture and make manufactured food products stick together, hold their shape (those cute little O's).

Open Original Shared Link

And it's a double whammy if transglutaminase treated cereal is served with dairy:

Open Original Shared Link

Soy can also cause problems for some Celiacs.  The chocolate may have soy added to it.  

Sticking to whole foods for eighteen months to allow for more intestinal healing before trying manufactured gluten free foods might be a better option for some sensitive Celiacs.

Hope this helps!

 

 

 

[Ennis-TX]

As mentioned corn which is another semi common issue like oats, and the fact that 10% of celiacs react to oats just like gluten grains is another thought that popped up. Hopefully she is not one of those, I have the oat issues and allergic to corn. It is quite a pain and limits me more so to only a few brands. Might see how just some corn treats her on a reaction or make some gravy with corn starch and gluten-free broth like Pacific and see how she reacts would be a quick indicator if that is the issue. As to the oats perhaps try Bobs Red Mill or gluten-free Harvest Oatmeal, You can order gluten-free harvest (Company is owned by a celiac family)  instant oatmeal cups online. IF she reacts to the gluten-free oatmeal you know you have a oat issue.  

Anyway for the immediate needs rotate back to a whole foods only diet perhaps some nice homemade simple soups to get her back on track. Might even stick to it for a few weeks or months with simple dishes of grilled, baked, stewed meats, and steamed, grilled, baked veggies with minimal seasoning for awhile.

 

[Mermaid's Mom]

Thanks everyone!

I'll be honest...I don't think it's corn.  Even form the beginning we have allowed a wee bit of corn products in the form of a corn based nacho chip and some of our favorite pastas are a corn blend.  So she has been exposed to corn.  I also haven't stringently avoided soy or cornstarch in products and the minimal exposure has not been an issue.

But this is literally her first exposure to oats. 

So we will cut out oats and see what happens.

Unfortunately with her remaining food issues (aversion to certain textures etc) a completely whole food diet isn't possible.  Fruits and veggies are hard and the stars and moon have to align just a certain way when mercury is in retrograde before she happily eats most fruits, veggies.

But we will strip back to what we doing and be a little more cautious about expanding the diet to new foods for now.

Thanks again

[Ennis-TX]

2 minutes ago, Mermaid's Mom said:

Thanks everyone!

I'll be honest...I don't think it's corn.  Even form the beginning we have allowed a wee bit of corn products in the form of a corn based nacho chip and some of our favorite pastas are a corn blend.  So she has been exposed to corn.  I also haven't stringently avoided soy or cornstarch in products and the minimal exposure has not been an issue.

But this is literally her first exposure to oats. 

So we will cut out oats and see what happens.

Unfortunately with her remaining food issues (aversion to certain textures etc) a completely whole food diet isn't possible.  Fruits and veggies are hard and the stars and moon have to align just a certain way when mercury is in retrograde before she happily eats most fruits, veggies.

But we will strip back to what we doing and be a little more cautious about expanding the diet to new foods for now.

Thanks again

Thoughts on blending veggies into dips?  I oddly enough have made a taco dip out of asparagus and peas, and made a queso out of egg plant blending them. Should I share these? Might be a way to implement more veggies into the diet.  I also have recipes for making Alfredo sauce out of cauliflower, and a lovely creamy butter nut squash soup recipe.

 

[Mermaid's Mom]

12 minutes ago, Ennis_TX said:

Thoughts on blending veggies into dips?  I oddly enough have made a taco dip out of asparagus and peas, and made a queso out of egg plant blending them. Should I share these? Might be a way to implement more veggies into the diet.  I also have recipes for making Alfredo sauce out of cauliflower, and a lovely creamy butter nut squash soup recipe.

 

I have to tell you about my daughters super power.  And I do literally think it is a super human power.  She has the taste buds and scent capabilities of an Iron Chef crossed with a Blood Hound.  You see her nose twitch and she becomes consumed with deciphering the smell.  We will be sitting in a restaurant and she will say "is something on fire?" and then try to describe the odd burning smell she is getting.  No one else at the table does.  Then 2 mins later we all get a whiff of extinguished sparklers from someone's birthday celebration in another area of the restaurant.

If she stands beside you she can smell what you just ate.  The other day we were eating a dish that had fresh parm on it.  When she walked into the kitchen she declared that one of the smells was "odd" she went pot to pot and smelled everything.  She smelled the chives, the sour cream, the butter, the potatoes.  more than once.  She kept going back to the parm.  Insisted we all smell it.  We all did and just shrugged unable to help her.  The entire meal she was consumed by smelling her foods.  Once got up and resmelled everything in the kitchen unable to tease out what smelled "off".  Said she got a whiff of the same smell the day before.  

All this to say that later when we got up to clean up from the meal she picked up the parm and stirred it.  Then let out a whoop!  Said OMG smell this.  Sure enough it NOW stunk.  It was off.  We all ate it and it was off.  I of course blamed my head cold on my lack of smelling it but in truth she has a super power.   Once I swapped dark brown sugar for the usual light brown sugar in a fave choc chip cookie recipe and she took one bite and asked if I added  molasses to the cookies! LOL   It is amazing to behold and it is impossible to fool her or hide foods.  It is also why she has many food "issues" her palate is very refined and she struggles when things are not perfectly fresh.  It really keeps life interesting! LOL

 

[Mermaid's Mom]

Oh and the update is depressing...her difficulty with swallowing is back.  She says its been a few days.  Her DH scalp rash is back and she woke up today with a bad headache.  SO FRUSTRATING!

[Ennis-TX]

10 minutes ago, Mermaid's Mom said:

I have to tell you about my daughters super power.  And I do literally think it is a super human power.  She has the taste buds and scent capabilities of an Iron Chef crossed with a Blood Hound.  You see her nose twitch and she becomes consumed with deciphering the smell.  We will be sitting in a restaurant and she will say "is something on fire?" and then try to describe the odd burning smell she is getting.  No one else at the table does.  Then 2 mins later we all get a whiff of extinguished sparklers from someone's birthday celebration in another area of the restaurant.

If she stands beside you she can smell what you just ate.  The other day we were eating a dish that had fresh parm on it.  When she walked into the kitchen she declared that one of the smells was "odd" she went pot to pot and smelled everything.  She smelled the chives, the sour cream, the butter, the potatoes.  more than once.  She kept going back to the parm.  Insisted we all smell it.  We all did and just shrugged unable to help her.  The entire meal she was consumed by smelling her foods.  Once got up and resmelled everything in the kitchen unable to tease out what smelled "off".  Said she got a whiff of the same smell the day before.  

All this to say that later when we got up to clean up from the meal she picked up the parm and stirred it.  Then let out a whoop!  Said OMG smell this.  Sure enough it NOW stunk.  It was off.  We all ate it and it was off.  I of course blamed my head cold on my lack of smelling it but in truth she has a super power.   Once I swapped dark brown sugar for the usual light brown sugar in a fave choc chip cookie recipe and she took one bite and asked if I added  molasses to the cookies! LOL   It is amazing to behold and it is impossible to fool her or hide foods.  It is also why she has many food "issues" her palate is very refined and she struggles when things are not perfectly fresh.  It really keeps life interesting! LOL

 

OMG I can smell things like that too on people, I can tell what someone ate often. My issues is taste, my taste and mouth nerves are damaged.....SOO wish you lived closer I could hire her to taste my deserts for markets lol. I tend to over season things to compensate at times. She sounds so fun to cook for and seems so well behaved with the way you describe her. I still might suggest the queso and the butter not squash soup. Going to post in the recipe section today.

 

[Mermaid's Mom]

Just now, Ennis_TX said:

OMG I can smell things like that too on people, I can tell what someone ate often. My issues is taste, my taste and mouth nerves are damaged.....SOO wish you lived closer I could hire her to taste my deserts for markets lol. I tend to over season things to compensate at times. She sounds so fun to cook for and seems so well behaved with the way you describe her. I still might suggest the queso and the butter not squash soup.

We literally have been guiding her for years now to consider being a taste tester.  She can tease out EVERY ingredient.  If I use salted butter instead of unsalted and then don't adjust the salt in the recipe she will tell me that a frosted cookie is too salty! LOL!  She also likes fuzzy peaches ( a sour candy) a lot.  The first time she drank Natural CALM magnesium citrate she said "Hmmm...something in this drink tastes like fuzzy peaches".  I burst out laughing because BOTH have citric acid and I told her.  Think about that!!  It is so bizarre!  You would TOTALLY love to cook for her.  And it is lovely that you have been able to tease out her personality from my writing because she is a very remarkable kid.  All adults love her and she is a delightful young mature lady.  Thanks!