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Attention Sensitive Celiacs

dilettantesteph

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dilettantesteph Collaborator
dilettantesteph
Posted
  • Author
Thanks for the info - I went ahead and ordered it. Sounds like a great idea since my son seems so much like he is getting gluten somehow and I can't think of the source but have a couple of suspicions for x contm.

That happened to me with my son. There were two things that I suspected. I tested them both with twice the sample size. One was pizza and one was corn chips. The pizza I only tested the crust. Both tested negative, at twice the sample size that means less than 5 ppm. Then I looked at the pizza one again really carefully with a fluorescent light and magnification and I saw a tiny line. Probably about 2.5 ppm and he only had one small piece of pizza. That was enough to make him miss school for two days and feel lousy for a week. The pizza was from a company that tests to 5 ppm. With food like that you can't do more than twice the sample size because there isn't enough liquid to remove for the test. The test has it's limitations. I hope you can find what it is.

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dilettantesteph Collaborator
dilettantesteph
Posted
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Well. I would like to ask this question to those that post, that are not sensitive. (by no means do I mean ALL posters.....Just seems to be a few on here).

Why take such offense with those of us that are very sensitive? I really would like to know the real reason. All the best, Mike

I think that there is a fear that we are like the canary in the coal mine. Or are they the ostrich with it's head in the sand? Is the food that they are eating really safe? They want to feel that it is and that we are crazy. The test that shows the presence of gluten in the food that they eat must be wrong. You must be a company plant to make money off sick people.

All I know is that when my son or I get sick, I test. I find the food that has gluten in it and stop eating it. We get better. That is enough for me.

Lisa Mentor
Lisa
Posted
I think that there is a fear that we are like the canary in the coal mine. Or are they the ostrich with it's head in the sand? Is the food that they are eating really safe? They want to feel that it is and that we are crazy. The test that shows the presence of gluten in the food that they eat must be wrong. You must be a company plant to make money off sick people.

All I know is that when my son or I get sick, I test. I find the food that has gluten in it and stop eating it. We get better. That is enough for me.

I have tremendous concern for the people who frequent this site, that companies take advance of marketing their products to frustrated people sick and tired of being sick and tired.

The reliability of this product has been in question and it is outrageously expensive. I also have concerns for the new members here seeking primary information, may feel that ALL food they consume should be tested with this product, sensitive or not.

I do tend to be a bit overprotective, toward the people of this forum and I apologize for that. It has been indicated that it's none of my business what people choose to do. No, it's not my business, but a new member to this site should receive both sides of a discussion on a public forum, to make an informed decision.

If it works for you, GREAT! :D

dilettantesteph Collaborator
dilettantesteph
Posted
  • Author
I have tremendous concern for the people who frequent this site, that companies take advance of marketing their products to frustrated people sick and tired of being sick and tired.

The reliability of this product has been in question and it is outrageously expensive. I also have concerns for the new members here seeking primary information, may feel that ALL food they consume should be tested with this product, sensitive or not.

I do tend to be a bit overprotective, toward the people of this forum and I apologize for that. It has been indicated that it's none of my business what people choose to do. No, it's not my business, but a new member to this site should receive both sides of a discussion on a public forum, to make an informed decision.

If it works for you, GREAT! :D

I appreciate your concern for people on this site, especially new celiacs. For some celiacs, the 20 ppm limit on gluten free foods is not enough. We need our foods to be more free of gluten than that. This has been stated by my GI doc. Reading labels isn't enough for people like us. We need exclusive facilities, and sometimes we need to test things for ourselves, and know to what extent facilities are testing. I agree that hearing about all this super sensitive stuff from the beginning when it might not be necessary can be mind boggling. Later, when it is established that super sensitivity is a problem, you need all the information that you can get. Personally, I felt like you were trying to prevent me from getting that information some months ago. I intentionally addressed this post to sensitive celiacs so as not to confuse newbies. I appreciate your apology.

snowgirl Newbie
snowgirl
Posted
I appreciate your concern for people on this site, especially new celiacs. For some celiacs, the 20 ppm limit on gluten free foods is not enough. We need our foods to be more free of gluten than that. This has been stated by my GI doc. Reading labels isn't enough for people like us. We need exclusive facilities, and sometimes we need to test things for ourselves, and know to what extent facilities are testing. I agree that hearing about all this super sensitive stuff from the beginning when it might not be necessary can be mind boggling. Later, when it is established that super sensitivity is a problem, you need all the information that you can get. Personally, I felt like you were trying to prevent me from getting that information some months ago. I intentionally addressed this post to sensitive celiacs so as not to confuse newbies. I appreciate your apology.

For me its a great help hearing from people who are super sensitive. My son has been gluten-free for over a year now, but has begun to have issues exactly like before going gluten-free - I am searching very hard to see if there is a x contam source since I think he may be super sensitive (he has a severe milk and soy allergy and reacts to trace amts of those), so having a home test is a huge help. It may turn out that one of his other allergies is the problem, but I want all the information out there to help me find the answer. So for me , I want to thank you for starting this thread.

Mike M Rookie
Mike M
Posted
I have tremendous concern for the people who frequent this site, that companies take advance of marketing their products to frustrated people sick and tired of being sick and tired.

The reliability of this product has been in question and it is outrageously expensive. I also have concerns for the new members here seeking primary information, may feel that ALL food they consume should be tested with this product, sensitive or not.

I do tend to be a bit overprotective, toward the people of this forum and I apologize for that. It has been indicated that it's none of my business what people choose to do. No, it's not my business, but a new member to this site should receive both sides of a discussion on a public forum, to make an informed decision.

If it works for you, GREAT! :D

Thank you Momma Goose. all the best ( And I mean that sincerely), Mike

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      Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance  on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so refractory is out of the question based on my talk with dr. If Scott is right and there are so many intolerance in food for celiac what is left to eat?? And now histamine? I mean what should i eat? Maybe gastritis is doing all this trouble? Thanks Kind regard    
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      @Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. 
    • trents
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      By trents · Posted

      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
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      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
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      By trents · Posted

      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
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