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Jewels50

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Jewels50 Apprentice

In an effort to find out what I have been eating that is causing my symptoms (migraines, joint pain, brain fog, fatigue, gut pain) I have invested in a Nima tester.

Peanut M&M's DID NOT pass the gluten free test!  I highly suspect cross contamination as Mars have so many M&M's that contain gluten items like pretzels and cookies.  Peanut M&M's are off my safe list of something quick to grab.  It also helps to shed light on why my tTg is slightly elevated as I have been eating them as of late.

Since I am going with whole foods for awhile to see if that helps resolve my symptoms, peanut M&M's are off my list anyway.

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Ennis-TX Grand Master
36 minutes ago, Jewels50 said:

In an effort to find out what I have been eating that is causing my symptoms (migraines, joint pain, brain fog, fatigue, gut pain) I have invested in a Nima tester.

Peanut M&M's DID NOT pass the gluten free test!  I highly suspect cross contamination as Mars have so many M&M's that contain gluten items like pretzels and cookies.  Peanut M&M's are off my safe list of something quick to grab.  It also helps to shed light on why my tTg is slightly elevated as I have been eating them as of late.

Since I am going with whole foods for awhile to see if that helps resolve my symptoms, peanut M&M's are off my list anyway.

Hmm While home testers are not 100% accurate I have found the nima to be OVERLY sensitive, it can be set off by stuff as low if not below 5ppm. A offical lab test would be needed before you can or shall I say SHOULD publicly condemn a company for this. Perhaps forward your findings, lot number etc. to GlutenFreeWatchDog or see about paying for a lab test yourself. I can give you a lab that does it officially and you would just need to pay for the testing, and send in a unopened bag. From there you would have your evidence to call them out on it.

NOW I have not been able to eat peanuts or M&Ms for years. >.> I made a snack mix that taste just like them. A blend of pure ground coco nibs, I found Ecuador or a Light Ghana Roasted version (Crio Bru Brand makes this as a coffee sub, I just eat them as is) with a sweetener like lakanto monk fruit in a bowl taste like M&Ms and I sprinkle this over my homemade dairy free icecream, shakes etc often >.< sometimes just eat a spoon of it.

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kareng Grand Master
1 hour ago, Jewels50 said:

In an effort to find out what I have been eating that is causing my symptoms (migraines, joint pain, brain fog, fatigue, gut pain) I have invested in a Nima tester.

Peanut M&M's DID NOT pass the gluten free test!  I highly suspect cross contamination as Mars have so many M&M's that contain gluten items like pretzels and cookies.  Peanut M&M's are off my safe list of something quick to grab.  It also helps to shed light on why my tTg is slightly elevated as I have been eating them as of late.

Since I am going with whole foods for awhile to see if that helps resolve my symptoms, peanut M&M's are off my list anyway.

The last time someone got info from Mars, they said something like - they make so many plain and peanut m&ms that they have there own lines and supplies.  They odd flavors are run on other machinery.

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Gemini Experienced

FWIW........Open Original Shared Link

I eat only the plain (milk and dark chocolate) plus the peanut ones from time to time and neither flavor has never bagged me in 12 years.  I think Kareng is correct with regards to manufacturing......it would be smart to just manufacture the gluten free ones on a single line(s) and do others with gluten ingredients on their own.  No need to clean the lines for allergy contamination, it would be to just  make sure lines are cleaned well for clean sake.

I have a NIMA also and use it to test things that have a  "no gluten ingredient"  label I may want to eat.  The vast majority of times they are gluten free and I have never been sick doing it that way.  I never test M&M's because I have never been sick from them.  They are also included on just about every gluten free candy list out there. I think if you are newly diagnosed, they just may not agree with you because they are not a healthy food choice and are high in fat and sugar. Symptoms of Celiac can come and go for up to 2-3 years after diagnosis, whether you have been glutened or not.  I had a recurrence of symptoms after a couple of years healing and it turned out to be the dairy....gave me exactly the same symptoms as gluten and still does if I eat too much of it.   :(

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Jewels50 Apprentice
5 hours ago, Gemini said:

 

FWIW........Open Original Shared Link

I eat only the plain (milk and dark chocolate) plus the peanut ones from time to time and neither flavor has never bagged me in 12 years.  I think Kareng is correct with regards to manufacturing......it would be smart to just manufacture the gluten free ones on a single line(s) and do others with gluten ingredients on their own.  No need to clean the lines for allergy contamination, it would be to just  make sure lines are cleaned well for clean sake.

I have a NIMA also and use it to test things that have a  "no gluten ingredient"  label I may want to eat.  The vast majority of times they are gluten free and I have never been sick doing it that way.  I never test M&M's because I have never been sick from them.  They are also included on just about every gluten free candy list out there. I think if you are newly diagnosed, they just may not agree with you because they are not a healthy food choice and are high in fat and sugar. Symptoms of Celiac can come and go for up to 2-3 years after diagnosis, whether you have been glutened or not.  I had a recurrence of symptoms after a couple of years healing and it turned out to be the dairy....gave me exactly the same symptoms as gluten and still does if I eat too much of it.   :(

 

Recently, my lab test came back slightly elevated (5) on my tTg levels plus I have been having the symptoms of being glutened.   I was diagnosed 6 years ago and for the most part, have been doing okay with the occasional set back usually due to a cross contamination issue at a restaurant and a well meaning friend or relative thinking that they could do the gluten-free thing.  I found I cannot do oats at all by adding some gluten-free ones back in one day.

I have gone to a whole foods type of diet while trying to figure out what I could possibly be eating that is causing my tTg level to be at 5 (along with the symptoms).   I am testing foods with the Nima because it is frustrating trying to figure out where the gluten is coming from.  I stopped eating peanut M&M's for quite some time but recently started snacking on them again.  I am seriously baffled.  If I am in doubt about whether something is gluten-free or not, I go without.

What independent labs are there to do a Celiac panel? 

 

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Jewels50 Apprentice
10 hours ago, Ennis_TX said:

Hmm While home testers are not 100% accurate I have found the nima to be OVERLY sensitive, it can be set off by stuff as low if not below 5ppm. A offical lab test would be needed before you can or shall I say SHOULD publicly condemn a company for this. Perhaps forward your findings, lot number etc. to GlutenFreeWatchDog or see about paying for a lab test yourself. I can give you a lab that does it officially and you would just need to pay for the testing, and send in a unopened bag. From there you would have your evidence to call them out on it.

 

Good to know that the Nima can be overly sensitive.  I would be interested in the lab information.  Thank you!

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Ennis-TX Grand Master
35 minutes ago, Jewels50 said:

Good to know that the Nima can be overly sensitive.  I would be interested in the lab information.  Thank you!

Open Original Shared Link Contact them see about having something tested, you then send in a unopened or sealed package for them to test. -_- Two of my nima stories, I tested some BBQ Upton Jack Fruit and it came back positive, first mistake I made was taking the sampling with a utensil I had used to handle some other stuff I was working with (that ended up being the culprit that made me sick) second I jumped the gun and and raged about their stuff having gluten. Lab test came back negative.....I found out later that my leftovers were making me sick, This got me a new testing protocol, I got mini sampling forks and little 8-12mg sampling scoops from amazon for future nima testing. Second time around I got some Hemp Protein that said it MIGHT contain wheat. I tested it and it came back with gluten, sent it to the lab and it came back at 6ppm.....well now. I had a few other containers from that same lot number. I did a little experiment with myself seeing what super low gluten exposure over a few weeks would do....very interesting I will say the symptoms slowly ramped up, funniest thing it was mostly neurological the constipation did not hit til  much later, at first it was a bit of numbness, then fog, coordination issues.......anyway. I think I talked about it here somewhere as I was testing the effects of the low exposure over time.

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Victoria1234 Experienced
18 hours ago, Gemini said:

FWIW........Open Original Shared Link

I eat only the plain (milk and dark chocolate) plus the peanut ones from time to time and neither flavor has never bagged me in 12 years.  I think Kareng is correct with regards to manufacturing......it would be smart to just manufacture the gluten free ones on a single line(s) and do others with gluten ingredients on their own.  No need to clean the lines for allergy contamination, it would be to just  make sure lines are cleaned well for clean sake.

I have a NIMA also and use it to test things that have a  "no gluten ingredient"  label I may want to eat.  The vast majority of times they are gluten free and I have never been sick doing it that way.  I never test M&M's because I have never been sick from them.  They are also included on just about every gluten free candy list out there. I think if you are newly diagnosed, they just may not agree with you because they are not a healthy food choice and are high in fat and sugar. Symptoms of Celiac can come and go for up to 2-3 years after diagnosis, whether you have been glutened or not.  I had a recurrence of symptoms after a couple of years healing and it turned out to be the dairy....gave me exactly the same symptoms as gluten and still does if I eat too much of it.   :(

I put them in my trail mix occasionally because they have peanuts, and peanuts are healthy, right? :unsure:

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Ennis-TX Grand Master
2 minutes ago, Victoria1234 said:

I put them in my trail mix occasionally because they have peanuts, and peanuts are healthy, right? :unsure:

Sorta and really depends on the person, peanuts are legumes not real nuts.  I have a intolerance/allergy to them (yeah combo deal there, slight allergy, but traces of them make me violently ill).  I would personally suggest almonds over peanuts for healthy fats and fiber -_- I will admit I miss the flavor of peanut butter, and make my own almond butter a few times a week. >,< I went as far as finding peanut butter extract that was peanut free using artificial ingredients to get that flavor back, OH how I miss it. I got to admit using that extract in almond milk (WHY was there no Peanut Milk when I was kid? Like peanut and chocolate versions?) , dairy free icecream bases, mixed in chocolate sauces (bloody awesome), baked goods, and almond butters is great but still not the same. I give in about once a year and try abit of peanut butter, I did it back in july (only a tiny bit on the tip of a spoon) and was married to the toilet for 2 hours violently vomiting.

 

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Gemini Experienced
16 hours ago, Jewels50 said:

Recently, my lab test came back slightly elevated (5) on my tTg levels plus I have been having the symptoms of being glutened.   I was diagnosed 6 years ago and for the most part, have been doing okay with the occasional set back usually due to a cross contamination issue at a restaurant and a well meaning friend or relative thinking that they could do the gluten-free thing.  I found I cannot do oats at all by adding some gluten-free ones back in one day.

I have gone to a whole foods type of diet while trying to figure out what I could possibly be eating that is causing my tTg level to be at 5 (along with the symptoms).   I am testing foods with the Nima because it is frustrating trying to figure out where the gluten is coming from.  I stopped eating peanut M&M's for quite some time but recently started snacking on them again.  I am seriously baffled.  If I am in doubt about whether something is gluten-free or not, I go without.

What independent labs are there to do a Celiac panel? 

 

Have you had the DGP repeated or was that done in the beginning?  Relying on the tTg alone for dietary compliance is wrong.  It can be elevated from other AI issues alone and other AI issues can mimic Celiac symptoms.  I have 4 AI diseases in total and some of them overlap with symptoms.  Hashi's thyroid disease is one such example.  If your DGP is normal but the tTg is elevated, then it may not be gluten that is causing you grief. 

I totally understand the baffling part of this because I was there in the past also.  Even now I question my thyroid disease as being a culprit if I don't feel right.  I am super careful with food and track everything that goes into my mouth.  Like you, I use the NIMA for certain things. When people are that careful, and you sound like you are, then gluten may not be the culprit.

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Gemini Experienced
3 hours ago, Victoria1234 said:

I put them in my trail mix occasionally because they have peanuts, and peanuts are healthy, right? :unsure:

I consider them healthy if they are just plain nuts with little to no salt on them and are not overly processed. I love nuts of all kinds!  Unless you have trouble digesting fats or have an allergy, then nuts are good!

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Gemini Experienced
16 hours ago, Jewels50 said:

What independent labs are there to do a Celiac panel? 

 

Open Original Shared Link

This one you can access directly without a doctor involvement.  They send you to a draw site.  Other forum members have used this or at least have linked to this site for others.  I believe you have to pay cash but am not sure if they bill insurance.

Open Original Shared Link

This is where I have had all my Celiac testing and follow-up done.  You need a doctor who tests with them but they have a section where they list doctors in your area, if there are any.  There testing is complete and thorough.  They include all the right stuff. They also have a Pay Assure system, where you pay a certain amount up front.  They bill your insurance and if it is not covered, then you don't pay any more than what you already gave them. I've been doing this for years because, otherwise, I would never get any answers from the mainstream doctor crowd.

 

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Jewels50 Apprentice
On 8/10/2017 at 11:50 AM, Gemini said:

 

On 8/9/2017 at 7:13 PM, Jewels50 said:

What independent labs are there to do a Celiac panel? 

 

Open Original Shared Link

This one you can access directly without a doctor involvement.  They send you to a draw site.  Other forum members have used this or at least have linked to this site for others.  I believe you have to pay cash but am not sure if they bill insurance.

Open Original Shared Link

This is where I have had all my Celiac testing and follow-up done.  You need a doctor who tests with them but they have a section where they list doctors in your area, if there are any.  There testing is complete and thorough.  They include all the right stuff. They also have a Pay Assure system, where you pay a certain amount up front.  They bill your insurance and if it is not covered, then you don't pay any more than what you already gave them. I've been doing this for years because, otherwise, I would never get any answers from the mainstream doctor crowd.

 

Thank you for all this good information.  My first test (2011) contained results for DGP IgG, which was negative and results for DGP IgA, which was highly positive (because I was eating gluten for the challenge testing).  This particular test was not done in my most recent testing.  

I have found a lab close to where I live that does a full panel and allows walk ins.  This has been my experience as well; the mainstream doctors are not very educated on Celiac disease and thus very short on answers.   Many doctors use the principle of Occam's razor to diagnose. 

 

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Jewels50 Apprentice
On 8/10/2017 at 8:34 AM, Ennis_TX said:

  I have a intolerance/allergy to them (yeah combo deal there, slight allergy, but traces of them make me violently ill)

Nima is coming out with a sensor for those with peanut allergies this fall!  Yay!  My Grandson has a bad allergy to peanuts (epi pens kind) and this sensor will help to make a huge difference to my daughter's family eating out dilemma.

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Ennis-TX Grand Master
12 minutes ago, Jewels50 said:

Nima is coming out with a sensor for those with peanut allergies this fall!  Yay!  My Grandson has a bad allergy to peanuts (epi pens kind) and this sensor will help to make a huge difference to my daughter's family eating out dilemma.

Saw this and was debating it so I can try getting nuts from Nuts.com and a few other places and test them for CC of peanuts....it has been just try them and see if they make me sick. Yeah seems peanut CC happens a lot in companies that sell them in combination with other nuts.... As it is right now I can order, Almonds from a dedicated almond only producer, same with walnuts and pistachios but they can get EXPENSIVE. Recently had luck with some macadamia nuts but they are SO iffy that they scare me.
Honestly peanuts are not LIFE threatening to me nor seem to have long term effects after the purge. so right now shelling out that kind of cash on the tester is out of the question.

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Jewels50 Apprentice

 

On 8/10/2017 at 10:50 AM, Gemini said:

Open Original Shared Link

This one you can access directly without a doctor involvement.  They send you to a draw site.  Other forum members have used this or at least have linked to this site for others.  I believe you have to pay cash but am not sure if they bill insurance.

Open Original Shared Link

This is where I have had all my Celiac testing and follow-up done.  You need a doctor who tests with them but they have a section where they list doctors in your area, if there are any.  There testing is complete and thorough.  They include all the right stuff. They also have a Pay Assure system, where you pay a certain amount up front.  They bill your insurance and if it is not covered, then you don't pay any more than what you already gave them. I've been doing this for years because, otherwise, I would never get any answers from the mainstream doctor crowd.

 

Thank you for the link.  I have had my own celiac panel done.  My tTg were still slightly elevated as well as my DG Abs, IgA.  My DG Abs, IgG was negative.  From the research I have done, if the DGP IgG is negative, then I am NOT ingesting gluten.  Open Original Shared Link.    Am I interpreting this correctly?  

I had a thyroid panel done at the same time and noticed that while still in the normal range, my TSH was on the high end and my free thyroxine was on the lowest end.  So I had a thyroid antibody panel done.  My thyroid peroxidase (TPO) was highlighted as high.  I will take these lab tests to my Dr. and go over them with her.  (Hashimoto's?  I have the symptoms.)

In my research, I have read over and over that if a person has one autoimmune disease, it is likely that they will have others.  And many on this site are living, breathing examples of it.  So why is this so difficult for some of the medical profession to grasp?  

Also, I have many symptoms of Sjogren's Syndrome - dry eye, dry mouth, dry skin, Raynaud's, fatigue, etc.  I do realize that SS is difficult to diagnose.

I met with the nutritional counselor, gave her my food diary and we discussed gluten free for 2 hours.  She let me know that my knowledge of nutrition and "gluten free" is very solid.  She was unaware of the NIMA tester and of the Fasano diet.

Thank you for all your input, links and help with this.  My frustration level has gone way down while working to figure this out.  Now if I could only find that really good, moist, truly gluten free donut...

 

 

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squirmingitch Veteran

Did you say donuts? We found this to be delicious!

Open Original Shared Link

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Victoria1234 Experienced
3 hours ago, squirmingitch said:

Did you say donuts? We found this to be delicious!

Open Original Shared Link

The cinnamon sugar ones are my favorite. At least when I tried them a couple years ago! Store doesn't carry them anymore.

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squirmingitch Veteran

Our store has only ever had the chocolate glazed & the vanilla glazed. I bet the cinnamon sugar ones are killer delicious!

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Victoria1234 Experienced
14 hours ago, squirmingitch said:

Our store has only ever had the chocolate glazed & the vanilla glazed. I bet the cinnamon sugar ones are killer delicious!

They are way better, to me at least. Not as super sweet! Oh gosh I need to find them locally now...

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Jewels50 Apprentice
On 9/1/2017 at 8:15 AM, squirmingitch said:

Did you say donuts? We found this to be delicious!

Open Original Shared Link

Oooooo!  I have checked out their website and they ship!!  Thank you!

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squirmingitch Veteran

YVW! :)

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