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"Super Sensitive" Celiacs.....

jerseyangel

By jerseyangel
in Super Sensitive People

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weluvgators Explorer
weluvgators
Posted
last I checked only the rice crust pizzas and the gluten-free mac and cheese were made in a dedicated facility. I have not tried the mac and cheese but LOVE throwing a bunch of stuff (veggies, meat) on them! One of my favorites!

Everyone is definitely on a different path! But what you just described sounds like an ALLERGIC reaction- not a gluten one- the hives, the headaches, the red skin. This might explain WHY despite the guests following your protocol your girls got sick. They may be allergic to something and you should consider getting them tested. Eggs are one of the top 8 allergens and I would HATE to see you blame it on gluten only for one of them to later have a serious allergic reaction.

I'm wondering if you have tried the elimination diet to be sure?

Yes, I agree it does sound like an allergic reaction, and that is my current thought for what we witnessed then and there. And I mentioned the eggs because I do plan to test them more thoroughly. We are currently gluten and dairy free with avoidance of soy and corn. There are other foods that individuals in our family eliminate or avoid for their specific needs. We have done several elimination diets on this journey, and I expect that we will continue to do more. Almond is one that I am currently trying to test for the family. It is very confusing to review details of these types of events, and I struggle to write them down for reference sometimes.

My girls have eaten eggs in the past without problems - same source too. While a possibility, I have already gone in many circles to often route back around to a possibility that also makes sense. I am somewhat biased based on our personal test results from Enterolab, as our gluten numbers were much more elevated than egg. We were generally around the Normal range for egg, but elevated highly for gluten. If you can direct me to a place that has information to discuss antibody levels and their meaning, I would appreciate it. I am still trying to understand other details of testing stuff too. It is rather difficult to find time to do so much reading and exploring. I sure am glad that I enjoy that part!

Seriously, their touching a keyboard and then eating with their hands - hey, they are kids, and it was pear chunks and stuff - great finger food - it just seems silly for me not to consider that the glutened keyboard is a possible explanation for their reaction. But who knows?! I am racking my brain for all possible explanations!! And, I have simply never seen it before. I may consider blood testing just to check if they do register any antibodies like that, and I take their reactions seriously. My DD2 did exhibit glutening symptoms that night - fever with restless sleep and belly ache. It is hard to understand all the things that are playing into it, but I am trying. Do you hold the eggs up with more suspicion than the gluten?

Of course, coming down with something may also be at play here - we are talking about the workings of a dynamic and variable immune system that is in development. And, gluten exposure doesn't usually help them fight things off. There are many variables to it all!

And, well, it was a reminder for me to ALWAYS make sure that hands are washed before we eat!! A rule well worth having in our house. It improves my sanity when I don't have to wonder if it was THAT! :lol: Oh, and a great reminder to get the portable hand wash station ready in the car - we are getting out to parks and for travel more where we need to wash our hands when we want to eat a bite.

Keila

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dilettantesteph Collaborator
dilettantesteph
Posted

Re: washing gluten.

I did an experiment. I had gluten containing amaranth seeds. I washed them with rubbing alcohol, I used rubbing alcohol because gluten is soluble in strong alcohol and that was the closest thing I had. Then I washed with soap and water. I tested before and after with the test strips. Of course it is impossible to be sure that the sample is contaminated in a uniform way. The washing procedure I used decreased the amount of gluten in the sample, but not by much. This lead me to believe that washing out food isn't going to achieve all that much in the way of washing off gluten. I wouldn't count on it with the beans, Keila, sorry.

Lisa Mentor
Lisa
Posted
I wouldn't count on it with the beans, Keila, sorry.

I'm sorry, but I have to ask... do you consider BEANS to be unsafe for Celiacs to consume?

(Patti, my most sincere apology)

jerseyangel Proficient
jerseyangel
Posted
  • Author

Lisa, please don't apologize! You have as much a right as anyone to ask questions and state your opinion ;)

Jestgar Rising Star
Jestgar
Posted
Re: washing gluten.

I did an experiment. I had gluten containing amaranth seeds. I washed them with rubbing alcohol, I used rubbing alcohol because gluten is soluble in strong alcohol and that was the closest thing I had. Then I washed with soap and water. I tested before and after with the test strips. Of course it is impossible to be sure that the sample is contaminated in a uniform way. The washing procedure I used decreased the amount of gluten in the sample, but not by much. This lead me to believe that washing out food isn't going to achieve all that much in the way of washing off gluten. I wouldn't count on it with the beans, Keila, sorry.

or...

it was a false positive to begin with, and all you did with your manipulations was add water to your sample, which made the result look a little less dark on the strip...

Kaycee Collaborator
Kaycee
Posted

Back to spices. Here in NZ a lot of the spices I look at in the supermarket say, processed on a line that processes gluten etc, or may contain traces of gluten. I have even cooked a cake once, felt sick and thought I better check the ingredients, and the packet of cinnamon I had used said it contained gluten. So I agree spices can be an issue. But having said that, our labeling and food production is different to yours, but I'm quite sure most of our spices are imported from somewhere.

Cathy

Mike M Rookie
Mike M
Posted
I'm sorry, but I have to ask... do you consider BEANS to be unsafe for Celiacs to consume?

(Patti, my most sincere apology)

Of course you know that beans in themselves are safe. If you are extra sensitive (what this thread was made for no?) there can be CC issues and gluten just does not wash off readily. The same equipment that harvests the beans in our area, also harvests the wheat. The winter wheat is taken off in early June around here and then the farmers "double crop" with beans. They just change the combine heads to do this at harvest time, using the same trucks and the same grain storage silos as the wheat. Mike

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Lisa Mentor
Lisa
Posted

Farm much Mike? :huh:

If this is the case, you must not eat any harvested food.

Mike M Rookie
Mike M
Posted
Farm much Mike? :huh:

If this is the case, you must not eat any harvested food.

Not much LOL, (Farming that is) Mike

Lisa Mentor
Lisa
Posted
Not much LOL, (Farming that is) Mike

Didn't think so. ;)

Jestgar Rising Star
Jestgar
Posted

Sorry for hijacking angel..

I contacted the gluten strip company and they said:

I talked with the lab and if you follow the instructions that come with the EZ Gluten Kit you have the correct reading. You should not leave the strip longer than 10 minutes.

in response to these questions:

Is there a way to increase the sensitivity of the test strips? Could I add more sample to the extraction solution, or leave the sample on the strip for longer than 10 minutes?

Also, how can I tell if I've messed something up and the sample isn't positive, I just screwed up the test somehow?

My interpretation of this is: if you don't do it the way you're instructed, they don't guarantee the results.

Sailing Girl Apprentice
Sailing Girl
Posted
I'm wondering if you have tried the elimination diet to be sure?

Yes, I have. Methodically. And I've also eliminated and then challenged four or five of the most likely suspects (dairy, soy, corn, nightshades, nuts), in some cases a couple of times. Nothing. I do not react to any of these. But I am extremely, exquisitely sensitive to gluten.

Mtndog Collaborator
Mtndog
Posted
Yes, I have. Methodically. And I've also eliminated and then challenged four or five of the most likely suspects (dairy, soy, corn, nightshades, nuts), in some cases a couple of times. Nothing. I do not react to any of these. But I am extremely, exquisitely sensitive to gluten.

Ugh....don't you hate that? :(

oceangirl Collaborator
oceangirl
Posted

Hi- wow! Lots happening on this thread... I apologize ahead of time for not having time to read through this entire thread, but, am I to understand that McCormick spices are not dedicated and absolutely gluten-free? Sorry to make anyone repeat! Sounds like a zillion issues are being addressed here.

I suppose it could explain some mysterious glutenings for someone who makes almost everything from whole foods...

Thank you,

lisa

Jestgar Rising Star
Jestgar
Posted

I just did a quick search and did not find anyone who had reaction to McCormicks, and many people who said they used McCormick's spices with no problems.

A more in-depth search might give you more information, if you wanted to invest the time.

oceangirl Collaborator
oceangirl
Posted

Thanks, Jestgar.

lisa

rumbles Newbie
rumbles
Posted

I have had occasional reactions to McCormick's spices; because I'm extremely sensitive to cross contamination and blister so easily, I rarely use spices anymore.

dilettantesteph Collaborator
dilettantesteph
Posted

Me too.

oceangirl Collaborator
oceangirl
Posted

I am supremely sensitive to gluten. Pretty positive I don't react to Mccormick's. 4 Years in I am very aware of the difference between reactions to my various intolerances. Thanks for the info, though. I wonder if your skin reaction is to the specific spice- that would make sense, I think.

lisa

dilettantesteph Collaborator
dilettantesteph
Posted
I am supremely sensitive to gluten. Pretty positive I don't react to Mccormick's. 4 Years in I am very aware of the difference between reactions to my various intolerances. Thanks for the info, though. I wonder if your skin reaction is to the specific spice- that would make sense, I think.

lisa

I am so happy to hear that. I was worried about you.

weluvgators Explorer
weluvgators
Posted

Hi! I was hoping for some suggestions to help a super sensitive person after they have been exposed. I do not feel that I am the super sensitive one in our family, but that is because I live with an almost 4 year old that is just so incredibly sensitive to gluten. I try to be understanding, but it feels so hard sometimes. Do you have suggestions for helping her cope with the irritability, depression, belly aches and leg pains? Do any of you experience sinus and respiratory issues with gluten CC exposure? I feel so bad for her, but I also feel such a tremendous responsibility to demonstrate that this lifestyle is wonderful.

Thanks.

dilettantesteph Collaborator
dilettantesteph
Posted
Hi! I was hoping for some suggestions to help a super sensitive person after they have been exposed. I do not feel that I am the super sensitive one in our family, but that is because I live with an almost 4 year old that is just so incredibly sensitive to gluten. I try to be understanding, but it feels so hard sometimes. Do you have suggestions for helping her cope with the irritability, depression, belly aches and leg pains? Do any of you experience sinus and respiratory issues with gluten CC exposure? I feel so bad for her, but I also feel such a tremendous responsibility to demonstrate that this lifestyle is wonderful.

Thanks.

I have found probiotics like BioK very helpful for healing with my son and I. He hates it though, and would usually go through pain and just eat yoghurt, which is also good.

weluvgators Explorer
weluvgators
Posted

Has anyone experienced issues when interacting with other people that have trace gluten in their personal space? Examples I can think of are people with gluten eating pets (like dogs that are in close proximity to their owners) and people that use gluten containing personal products (like hair sprays).

Sailing Girl Apprentice
Sailing Girl
Posted

Two more products down for the super-sensitive:

-- Bionaturae tomato paste (ingredients: organic tomatoes). My daughter had a horrible gluten reaction after eating nearly an entire jar of this stuff (and no, she doesn't react to nightshades). I tested it and it was faint positive, so probably okay for non-super-sensitives.

-- Haagen Dazs raspberry sorbet (ingredients: water, raspberry puree, sugar, corn syrup, fruit pectin, lemon juice concentrate, may contain trace amounts of milk protein). I had a medium-grade CC reaction to this (and no, I don't react to corn or to dairy). I tested it and it was positive -- probably right around 20 ppm. I've suspected reactions to Haagen Dazs before, but this was the first time I've confirmed it.

Sigh. Looks like I'll be making my own tomato paste and sorbet this weekend.

dilettantesteph Collaborator
dilettantesteph
Posted

Sorry to hear about that. It is harder to see your child sick than to be sick yourself. At least we get to learn to be great cooks!

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