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Does anyone want to let her know the address of that other forum where Celiac myths and misinformation abound?  She would be quite at home there.  :lol:

Oh, I imagine that after phantom gluten sources zap her enough times she will discover it somehow.

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I'm just happy paper plates are safe. But if dishwashers and vegetables and fruit are suspect should I assume steak isn't gluten free if a cow that ate straw that was grown near wheat? And I don't even want to think about the milk ;)


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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I'm just happy paper plates are safe. But if dishwashers and vegetables and fruit are suspect should I assume steak isn't gluten free if a cow that ate straw that was grown near wheat? And I don't even want to think about the milk ;)

It does not matter what the animal eats. The meat is absolutely gluten-free. Same goes for milk from any ruminants, including cows. Gluten can not pass from the digestive tract into the tissue or the milk. There have been suggestions that in humans gluten can pass into breast milk, but we have a very different digestive tract.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Um, could I make a suggestion? If your husband is the only one in your home who consumes gluten, why not segregate his dishes and YOU wash them by hand? That way the kids can continue using the dishwasher for the gluten-free dishes, and you will be assured there is no contmination. :)

Excellent suggestion. Having hubby hand wash his own dishes if he is the only one eating gluten also might be adviseable.  It might also be a good idea to make a rule that ALL food be eaten at the table. With that going for all family members whether they are gluten free or not. That would make crumbs easy to clean up and end concern about gluten contamination throughout the house.

If someone has been gluten free for 20 years and is still having issues with 'glutening' then something else may be an issue like a script med or another intolerance.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi Amalthea, I just wanted to share that I understand where you are coming from in your posts.  I also have wheat allergy and celiac issues, so I understand how difficult it can be for more standard, typical celiacs to relate to the more complicated challenges with a compounding immunological response to wheat and gluten.  As well, I am managing a household with three children.  While many in this post are critical of your approaches, they resonate well with me.  It sounds like you are managing your household well, and it seems to work well for you - congrats for all of your efforts paying off.

 

There is some interesting information about working on overall gut health to help with symptom management, but the scientists are still trying to understand these approaches.  We have worked to increase inulin in our diets to improve the prebiotic content of our diet.  We have been able to find other super sensitive individuals who have been very effective in helping us.  As well, moving to Australia and enjoying their superb gluten free labelling laws and general gluten free awareness was a refreshing and helpful approach for us.  In general, many of the methodologies you share in your posts are relegated to the "super sensitive" approaches that are rarely required for standard celiacs.  It may help to look at the super sensitive section if you want to better understand this board's position on the subject.  I also spent a really long time chasing all of the "other" things that I kept being encouraged to chase . . . and wasted a lot of time and ill health in the process!  Like you, learning to focus on the myriad ways that gluten was infiltrating our lives proved to be liberating!

 

As for paper plates, we try not to use them, but have never had issue with them.  We have not used them in the microwave.  I did see some "made from wheat straw" paper plates, but they were very specifically labelled as such.  We would not attempt to use paper plates made from any part of wheat.  Now, I have no idea if there is a requirement for labelling them as such, as I have been counting on the "sustainable," made from wheat straw paper plates to be obviously labelled as such.


My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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I don't recall play-doh getting mention in this discussion.  Is standard play-doh being used at daycare?  If so, are there processes in place to reduce the chance of your child's exposure?  You may also want to scan through the kids section of the forum and search for daycare discussions.  Play-doh is a big one, but other art, science or play materials could also come into consideration depending on the activities done.


My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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I'm just happy paper plates are safe. But if dishwashers and vegetables and fruit are suspect should I assume steak isn't gluten free if a cow that ate straw that was grown near wheat? And I don't even want to think about the milk ;)

Dishwashers and vegetables and fruit are not suspect, unless you are talking a fruit pie made with wheat crust.  The wax coating on fruits and veggies is safe also but should be washed off before consuming the produce.  I know that sounds stupid but believe me, lots of people don't bother to wash produce and I am more concerned from a germ point of view than gluten contamination. Even those little stickers on produce are safe but they don't taste very good so remove them.  ;)

 

Celiac Disease Foundations and medical experts are the go to people for good information on what is safe and what isn't.....oh, and most of the people on this forum.  I am sure if any of the mentioned scenarios on this thread were actually true, we would be warned by the experts and we would be keeling over with reactions every time we left the house. It can be very difficult to pin down the cause of symptoms, especially in young children.  I would suspect daycare myself as other people just don't truly understand the cc issue, even when they are trying hard to do so.  One small mistake a few times a week and symptoms return.  If your son was diagnosed using blood work, then maybe re-run the DGP and tTg tests to see what they show?  Maybe it isn't from gluten and he has developed a sensitivity to another food. 

 

I wish you luck as trying to figure things out without becoming too paranoid about his food can be difficult.

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I don't recall play-doh getting mention in this discussion.  Is standard play-doh being used at daycare?  If so, are there processes in place to reduce the chance of your child's exposure?  You may also want to scan through the kids section of the forum and search for daycare discussions.  Play-doh is a big one, but other art, science or play materials could also come into consideration depending on the activities done.

 

play-doh was the first things addressed. They currently use crayola model magic instead of play-doh even though it's not quite the same.  They are in the process of purchasing gluten free dough.  

 

http://www.discountschoolsupply.com/Product/ProductDetail.aspx?Product=7566

 

So far we have had a pretty good week compared to last week.  I also purchased an necklace for him that has a lavender based essential oil that I told him to smell when he was getting upset and it would help calm him. I'm still not sure what causes his temperament changes but I will get to the bottom of it. I still think it's gluten but I will work on one thing that can be controlled at a time and hope I find what is causing him distress. 


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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I beg to differ Gemini. Not all celiacs heal even on a gluten free diet. Read this study done by Joseph Murrary MD, Mayo Cinic as published in the American Journal of Gastroenterology.

http://www.celiac.nih.gov/TissueDamage.aspx

The reality is that even the leading celiac researchers do not have all the answers. I am not trying to scare people, but we are dealing with an autoimmune disorder that is still not well understood. Even A. Fansano has stated that many times (Fansano, Alessio. "Gluten Freedom. Turner Publishing, 2014.) they do not know!

The original OP has a challenge in finding a solution to her son's possible gluten exposure. We can only offer suggestions from our personal perspective. We do not always agree, but we should not be rude. I am stating this as a member and not as a board moderator.

 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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 If your son was diagnosed using blood work, then maybe re-run the DGP and tTg tests to see what they show?  Maybe it isn't from gluten and he has developed a sensitivity to another food. 

 

 

 

I would assume that his GI doctor will run the blood tests at some point before his first 6 month followup in November to see if the diet is working. Unfortunately when he was initially tested they only ran the iga ttg and igg ttg without running either DGP test.  Which one should have a faster decline? Here's what his original results were

 

Tissue Transglutaminase AB IgA >100 

Tissue Transglutaminase AB IgG 57 

 

I am really hoping and praying he doesn't develop any other sensitivities to food.  It's hard enough to keep a 3 year old gluten free but if I take away dairy he will be devastated.  Some day's cheese and milk are the only things I can even get him to eat.


Allison

Undiagnosed with DQ8 gene and have had symptoms for 20+ years. Gluten free since March 2015

Son - DX celiac via blood 3/2015 and biopsy 5/2015 (age 3) - gluten free May 2015

 

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I beg to differ Gemini. Not all celiacs heal even on a gluten free diet. Read this study done by Joseph Murrary MD, Mayo Cinic as published in the American Journal of Gastroenterology.

http://www.celiac.nih.gov/TissueDamage.aspx

The reality is that even the leading celiac researchers do not have all the answers. I am not trying to scare people, but we are dealing with an autoimmune disorder that is still not well understood. Even A. Fansano has stated that many times (Fansano, Alessio. "Gluten Freedom. Turner Publishing, 2014.) they do not know!

The original OP has a challenge in finding a solution to her son's possible gluten exposure. We can only offer suggestions from our personal perspective. We do not always agree, but we should not be rude. I am stating this as a member and not as a board moderator.

 

 

I have also seen that article and totally agree that board members  should reply to things they disagree with in a manner that is not as rude as some of the comments I have seen here. We are supposed to be here to be helpful to others not to make fun of them or cut them to pieces just because we disagree with something they have stated.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I beg to differ Gemini. Not all celiacs heal even on a gluten free diet. Read this study done by Joseph Murrary MD, Mayo Cinic as published in the American Journal of Gastroenterology.

http://www.celiac.nih.gov/TissueDamage.aspx

The reality is that even the leading celiac researchers do not have all the answers. I am not trying to scare people, but we are dealing with an autoimmune disorder that is still not well understood. Even A. Fansano has stated that many times (Fansano, Alessio. "Gluten Freedom. Turner Publishing, 2014.) they do not know!

The original OP has a challenge in finding a solution to her son's possible gluten exposure. We can only offer suggestions from our personal perspective. We do not always agree, but we should not be rude. I am stating this as a member and not as a board moderator.

 

 

I was in no way rude to anyone, cycling lady, and if we have posters coming on here making ridiculous claims that have no roots in fact concerning Celiac Disease, then they should be corrected. We have had trouble with people on this board before making such ridiculous claims that no reputable celiac organization would endorse or agree with. If this forum wants to remain a reputable source of information for those with Celiac disease trying to learn the ropes of this lifestyle CORRECTLY, board members need to pony up and correct the misinformation.

 

As for Celiac's who do not heal, I never said we all heal.  The vast majority do heal well enough to become healthy again and lead perfectly normal lives.  At least those of us who are optimistic do.  An added piece of medical advice for some of you to think about......your small intestine has the surface area of a tennis court, if it was laid out flat.  There is overlap in all that surface area, with regards to absorption. Carbs are absorbed in more than one area, as are other food groups and nutrients.  Ditto for vitamins and minerals.  This is God's perfect little design so that if one area is damaged, you still have the overlap that can take over.  If you think you will not heal, then you probably won't.  Half the battle with recovery is mental so if you are a pessimist, recovery may not be as good as someone who expects to recover and does the right things to do so.....which includes educating yourself from the right sources.  You might have forgotten that I came very close to dying from this disease and along the way, acquired 3 more serious AI diseases to boot.  Yet, 10 years later, I am a different person who manages Celiac and the other 3 quite well.  There was never a time when I thought I wouldn't heal....that was not an option.  This is not cancer.......how lucky we are that we have so much more control over our recovery than many.  This is the message that I try to make people understand and keep.......do not give in, learn the diet well and stay optimistic because it will get better. I am not special and if I can get to this point, many others can and will too.  Doctors are going to report on people who may not heal as well but there are many more who do heal well and these are the people who aren't running off to doctors all the time......they are not on the radar because they are too busy living life as a well person.

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I would assume that his GI doctor will run the blood tests at some point before his first 6 month followup in November to see if the diet is working. Unfortunately when he was initially tested they only ran the iga ttg and igg ttg without running either DGP test.  Which one should have a faster decline? Here's what his original results were

 

Tissue Transglutaminase AB IgA >100 

Tissue Transglutaminase AB IgG 57 

 

I am really hoping and praying he doesn't develop any other sensitivities to food.  It's hard enough to keep a 3 year old gluten free but if I take away dairy he will be devastated.  Some day's cheese and milk are the only things I can even get him to eat.

I would imagine, and this is just my opinion, that the DGP might drop faster as that is the test which checks for reaction to gluten. Once you stop eating it, the numbers should start dropping. This is why you need to be ingesting gluten right up to the testing date. The tTg tests for tissue damage (intestinal) and that number drops as a person heals.  But as many people are on different healing schedules, you never know how long it will take.

 

I did not show symptoms of a dairy problem until I was 2 years into the diet.  That happens to a lot of Celiac's....you feel fine for awhile and then some symptoms may return.  So, if some days your son only wants milk and cheese, that could be part of the problem.  Too much dairy can cause issues for a healing Celiac.  The good news is that for many, dairy can be tolerated just fine after the gut heals.  I still have to eat dairy lite but am fine with that.  There are many substitutes these days for dairy, like soy or almond milk.  Maybe cut back a bit on the dairy and try those to see how he likes them?  Or just wait until you see the doc and have the repeat testing done.

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ever find the secret gluten? im willing to bet one of the other kids just isn't washing their hands after eating at home... there are kids who just dont learn to wash their hands until they get yelled at on the way out the washroom

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