gfjennie

12 minutes ago, RMJ said:

Another part of the immune reaction to gluten in someone with celiac disease is the release of molecules called cytokines into the bloodstream.  When the body overreacts these can have systemic inflammatory effects.

got it, thank you, that is very helpful

3 minutes ago, RMJ said:

The ttg test is for antibodies to Tissue Transglutaminase, which is an enzyme that normally occurs in the human body.  That means that if you have high levels of the ttg antibodies you have antibodies against yourself, i.e. autoimmune.  However, the levels of ttg antibodies do NOT necessarily correlate with the amount of damage to the intestines.

Hope that helps a little?

3 minutes ago, RMJ said:

The ttg test is for antibodies to Tissue Transglutaminase, which is an enzyme that normally occurs in the human body.  That means that if you have high levels of the ttg antibodies you have antibodies against yourself, i.e. autoimmune.  However, the levels of ttg antibodies do NOT necessarily correlate with the amount of damage to the intestines.

Hope that helps a little?

that makes sense with everything I've heard and is a bit clearer

I'm still wondering about outside of the intestines, our doctors have said there is an overall "inflammatory" response - is this also caused by the antibodies produced against Tissue Transglutaminase? or is there some other biological process happening? 

1 hour ago, RMJ said:

The FDA summarized the available literature on the dose response to gluten before issuing the labeling regulations.  There is an extreme variability in the literature for the dose to which people respond (symptoms and pathology). Some people had trouble with a few milligrams, others could tolerate hundreds.  

This makes sense to me.  I used to be responsible for the production of antibodies in laboratory animals for use in diagnostic tests. In these highly inbred animals, the responses to antigens were also quite variable.

The body can respond to very small amounts of an antigen.  In the current COVID trials for which protocols have been made available, one is using a dose of 30ug, which is 0.030mg, and people make antibodies to that.

There are tables starting on page B-1 (79 of 93) of this FDA document that summarize the data is anyone likes such things.

https://www.fda.gov/media/81500/download

I don't have any background in biology and was trying to understand the ttg levels - and this may be covered somewhere else in the site - is the ttg test just providing an indicator? or is the what the ttg test measures part of what is harmful to your body? Aside from the impact within the gut, I'm particularly interested in understanding what our doctors have called an overall inflammatory response - what is causing that and how (if at all) it can be measured. It may not be that simple, and I may be asking sideways questions, but I'm eager to understand this better if you have any insights.

1 hour ago, Sharona said:

In my shoulders I get muscle weakness and when I am typing on the computer my arms feel weak so I guess a bit of both the muscle weakness and fatigued with the gluten. 

What you should try is good fats to keep him full longer.  You could use nuts like almonds, walnuts and mixed nuts baking as ingredients with oils. I use oils like avocado and coconut and grapeseed oils to bake or fry. With salads I use olive oil. You can try to incorporate more of this in his diet to give him more energy. 

good ideas! luckily he loves a vegan pesto we developed (with pistachios) and he likes things with almond flour and coconut milk or oil, loves avocados and eats tons of them, and I have been adding more olive oil to his stuff as well.... I think it probably is important to focus more on plant based solutions, so thanks for the suggestions and encouragement!! He likes peanuts too, but they seem like they can be hard on a tum if we eat too many...I think they just might be a little harder to digest.

1 minute ago, gfjennie said:

a little over a year and a half (TTG down from somewhere north of 100 to 20)...

when he has stomach problems he doesn't eat dairy, but otherwise he does it and it seems to be fine... and the doctors have said it is fine for him to eat, but I do worry that it is inflammatory, so we work to reduce dairy and eat lots of veg, but at the same time he is also now growing pretty fast and extremely hungry, and at times dairy can help a lot just filling him up if he needs a 2nd or 3rd dinner or a snack on the road.

for some reason eliminating dairy doesn't seem to be the main recommendation anymore, but I'm not sure why it has changed - my niece also has celiac, diagnosed over a decade ago, and she was off dairy for 2 years as well

incidentally is your shoulder pain in joints or muscles?

his used to be both, but felt it overwhelmingly in his leg muscles (he went from being a bit of a soccer player to barely being able to walk most mornings and also at the end of a school day). now he mostly has joint pain in his knees, and sometimes some muscle pain, but more often "deadness" where they just feel like it is hard to walk because they are fatigued, as though he worked out really hard even though he didn't

a little over a year and a half (TTG down from somewhere north of 100 to 20)...

when he has stomach problems he doesn't eat dairy, but otherwise he does it and it seems to be fine... and the doctors have said it is fine for him to eat, but I do worry that it is inflammatory, so we work to reduce dairy and eat lots of veg, but at the same time he is also now growing pretty fast and extremely hungry, and at times dairy can help a lot just filling him up if he needs a 2nd or 3rd dinner or a snack on the road.

for some reason eliminating dairy doesn't seem to be the main recommendation anymore, but I'm not sure why it has changed - my niece also has celiac, diagnosed over a decade ago, and she was off dairy for 2 years as well

3 minutes ago, Sharona said:

I have not had it confirmed but I know when I have eaten gluten and I do get muscle aches especially in my shoulders.  It takes a few days for the symptoms to disappear. Sometimes my bowels will be upset and sometimes it will to much of gluten to even digest and I will be throwing up a couple of hours later. I still end up with muscle aches after. I have to try to be very careful. I am sure your son has the same in a varying degree. You have to realize it is a poison to your system. Your immune system reaction and it affects my weak spot my shoulders. I have been diagnosed almost 30 years so it never goes away. I am not sure how old your son is but tell him it never pays to cheat and try something as you will feel the affects.

thank you... yes, the pain pretty much ensures he does not cheat. It had been rather debilitating prior to the diagnosis.

56 minutes ago, knitty kitty said:

While some Celiacs also develop sensitivity towards corn and rice, I believe that microbial transglutaminase (a.k.a. meat glue) causes reactions to certified gluten free foods. 

Microbial transglutaminase is used widely in the food industry to improve flavor and texture and prolong shelf life in gluten free foods as well as nongluten free foods.

Because microbial transglutaminase is classified as a processing agent, it does not have to be listed as an ingredient.  

Microbial transglutaminase (mTg) is produced by bacteria and is the same as the tissue transglutaminase (tTg) the Celiac patients produce when exposed to gluten and which causes the inflammation and autoimmune reaction of Celiac Disease.  

 

Here's your homework reading assignments.....

"Microbial transglutaminase: An overview of recent applications in food and packaging"

https://www.tandfonline.com/doi/full/10.1080/10242422.2020.1720660?src=recsys

 

"Microbial transglutaminase: A new potential player in celiac disease"

https://pubmed.ncbi.nlm.nih.gov/30543926/#:~:text=Abstract,potentially pathogenic in celiac disease.

 

"Microbial transglutaminase should be considered as an environmental inducer of celiac disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6887606/

 

"Processed Food Additive Microbial Transglutaminase and Its Cross-Linked Gliadin Complexes Are Potential Public Health Concerns in Celiac Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7037116/#:~:text=Microbial transglutaminase (mTG) is a,in multiple processed food industries.

Full article....

"Processed Food Additive Microbial Transglutaminase and Its Cross-Linked Gliadin Complexes Are Potential Public Health Concerns in Celiac Disease"

https://pubmed.ncbi.nlm.nih.gov/32046248/

 

"Microbial Transglutaminase Is Immunogenic and Potentially Pathogenic in Pediatric Celiac Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297833/

 

"Immunoreactivity of Gluten-Sensitized Sera Toward Wheat, Rice, Corn, and Amaranth Flour Proteins Treated With Microbial Transglutaminase"

https://www.frontiersin.org/articles/10.3389/fmicb.2019.00470/full

(Barilla provided the different types of flour in the above study. Can you discern how the results of this study are slanted?)

Knowledge is power!

Happy reading! 

 

thank you for this, I'm eager to dig in to these links

I had not heard of this, though we have learned about "decaking agents" and "wax" on non organic fruit.... dental products like toothpaste and floss.... what else am I missing?!

if there are other processing agents or non-ingredient ingredients we should be watching out for please let me know! my son still has relatively high numbers after a year and half of a gluten free diet and all new cookware and cutting boards...

(we are also vegetarian, so, bleck to Transglutaminase as well)

16 hours ago, Sharona said:

I notice and it depends on how sensitive you are. I get muscle aches with mild gluten intake. Sometimes a headache. I would recommend trying your best not to ingest any gluten. It does have a damaging effect on you even though you do not feel any consequence.

Hi Sharona,

my son gets muscle aches as well, though his doctors have said this is not a common side effect of celiac..... have you had confirmation that this is from celiac?bhis debilitating soreness has cleared up since he was diagnosed and went gluten free about 2 years ago, but when his stomach distress does flair up, so do his aches and pains. I don't know what else could be causing this or what else we should be checking for outside of gluten.

looking at the ingredients, it is just corn four, brown rice four, mono and diglycerides

I don't see any "pea protein"

they say it is made in a dedicated gluten free facility, and certified gluten-free

but perhaps the mono or diglycerides are contaminated

it is totally a mystery to me why I (celiac) was a little sick, and my son (very sensitive celiac) was very sick for a week, doubled over in pain, missing 4 days of school

While we've had it in the past (over 6 months ago), without any apparent trouble, but this was really the only "new food" we have had over the past several months other than some local fresh made tofu (where they also claim to have a gluten free shop, and they only make tofu with their only ingredients being organic soybeans and water). In any case, the cramping, pain and illness was severe enough that we won't be eating this or the locally made tofu any more.

My son and I both have Celiac. The last few times we've had this he seemed to react as though he's been glutened, and this last time acutely. He is more sensitive than I am and I did not have a big reaction, and could have just had "lasagna tummy" from eating too much as it is delicious. As for the possible corn sensitivity, he does not appear to have one, as we eat corn all of time without any problem. As for dairy, same thing - we don't use too much dairy in the lasagna, but he has dairy regularly without incident. Sadly we are adding this to the list of supposedly "gluten free" products he cannot eat. Does Tinkyada make lasagna noodles?

On 8/31/2009 at 10:34 AM, NorthernElf said:

What gives ? The bag says gluten free but my intestinal tract says otherwise !

 

A few months ago I tried the (gluten free) BBQ flavor and next thing I knew I had headaches & gut cramps...ugh, just let me lie down & leave me alone.

 

So, I'm in Costco the other day and I see the baked plain Kettle chips and the bag says gluten free...so I think, well maybe it was something else or maybe it was the full fat chips. I so wanted to believe ! Anyway, I had a small bowl each of the last 3 nights and headaches and such resumed. Ok, so I'm a little slow, the reactions were mild enough but as I look back I see I wasn't good company the last 3 nights and my tummy has been grumpy...and I've taken a lot of Tylenol. This am it has hit me full force.

 

So...I'm thinking - either I'm really sensitive or the term "gluten free" is pretty loosely defined. Or Kettle chips just suck...

 

Anyone else have a similar experience with Kettle chips or other so called gluten-free products ? I know when I was in England last year I got hit by some of the "Free From" products...it was only after I was back home that I found out the level of tolerance (ppm of allowable gluten) was higher there.

me too! 

both me and my son definitely react to Kettle chips. I thought it was just the sour cream and onion, but also the plain.

does anyone have any recommendation for safe potato chips from Trader Joe's (particularly in the crisp Kettle chip or Cape Cod chip style?)