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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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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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