Do I need a Gluten Service DOG?

[Jenny]

Good afternoon wise celiac experts! Please help me, I need sound advice! My ten-year-old daughter was diagnosed with celiac (positive bloodwork & endoscopy results) nearly five years ago. During that time, I have been vigilant to eliminate gluten: we don't allow other people to cook for her (with one/two exceptions), we don't allow gluten in our home, and we don't eat out. Still it is not enough. After 5 years gluten-free, my daughter's TTG levels are still 'off the charts' high. I am concerned about my daughter's health and am discouraged. I buy all the groceries, read every label, and  I have nearly complete control over everything my daughter consumes, but I am failing to get her TTG numbers down. Her GI doctor believes gluten is the cause of her sky high TTG levels and not a secondary condition.  Since I don't know how else to help my daughter, my husband and I are honestly considering a gluten detection service dog. According to some of these dog trainers, dogs are able to sniff out gluten at minute levels..far below 20 PPM. Does anyone have any experience with gluten detection dogs? Are they worth the price? Can any of you recommend a trainer?? This would be a HUGE expense for us, and I want to make sure it's worth it! Thoughts???

[kareng]

Maybe try The Fasano Elimination diet first?  Its cheaper.  The big  BUT here is your daughter .  She would have to want to do it.  At 10, she is at school and other kids houses?  So something this restrictive might not work.  

[cyclinglady]

Does she have symptoms?  Is she thriving?  Because it is known that the tests to determine celiac disease were designed for diagnostic purposes and not dietary compliance.  They are the only non-evasive “tools in the toolbox”.    My DGP IgA has never been normal (never had a positive on the TTG or EMA yet I was biopsy confirmed.  In fact, I had a repeat endoscopy last year which showed healed villi.  Oddly  my DGP IgA (which is supposedly a better indicator of gluten in the diet) was still elevated at the time.    I was going crazy trying to avoid gluten.  My hubby has been gluten-free for 18 years and I knew the diet well when I was diagnosed five years ago.  

Unless she has a repeat endoscopy/biopsies, you may never know for sure if gluten is in her diet or not.  

I did trial the Fasano diet and it did not bring down my DGP IgA.  That is why I went for the repeat endoscopy.  I was having some symptoms, but it turns out that I have another autoimmune disorder.  So the diet can be a good tool.  

The dog?  Pretty expensive.  First make sure her celiac disease is not active for sure!  

 

[marlene333]

1 hour ago, cyclinglady said:

Does she have symptoms?  Is she thriving?  Because it is known that the tests to determine celiac disease were designed for diagnostic purposes and not dietary compliance.  They are the only non-evasive “tools in the toolbox”.    My DGP IgA has never been normal (never had a positive on the TTG or EMA yet I was biopsy confirmed.  In fact, I had a repeat endoscopy last year which showed healed villi.  Oddly  my DGP IgA (which is supposedly a better indicator of gluten in the diet) was still elevated at the time.    I was going crazy trying to avoid gluten.  My hubby has been gluten-free for 18 years and I knew the diet well when I was diagnosed five years ago.  

Unless she has a repeat endoscopy/biopsies, you may never know for sure if gluten is in her diet or not.  

I did trial the Fasano diet and it did not bring down my DGP IgA.  That is why I went for the repeat endoscopy.  I was having some symptoms, but it turns out that I have another autoimmune disorder.  So the diet can be a good tool.  

The dog?  Pretty expensive.  First make sure her celiac disease is not active for sure!  

 

 

1 hour ago, cyclinglady said:

Does she have symptoms?  Is she thriving?  Because it is known that the tests to determine celiac disease were designed for diagnostic purposes and not dietary compliance.  They are the only non-evasive “tools in the toolbox”.    My DGP IgA has never been normal (never had a positive on the TTG or EMA yet I was biopsy confirmed.  In fact, I had a repeat endoscopy last year which showed healed villi.  Oddly  my DGP IgA (which is supposedly a better indicator of gluten in the diet) was still elevated at the time.    I was going crazy trying to avoid gluten.  My hubby has been gluten-free for 18 years and I knew the diet well when I was diagnosed five years ago.  

Unless she has a repeat endoscopy/biopsies, you may never know for sure if gluten is in her diet or not.  

I did trial the Fasano diet and it did not bring down my DGP IgA.  That is why I went for the repeat endoscopy.  I was having some symptoms, but it turns out that I have another autoimmune disorder.  So the diet can be a good tool.  

The dog?  Pretty expensive.  First make sure her celiac disease is not active for sure!  

 

 

2 hours ago, Jenny said:

Good afternoon wise celiac experts! Please help me, I need sound advice! My ten-year-old daughter was diagnosed with celiac (positive bloodwork & endoscopy results) nearly five years ago. During that time, I have been vigilant to eliminate gluten: we don't allow other people to cook for her (with one/two exceptions), we don't allow gluten in our home, and we don't eat out. Still it is not enough. After 5 years gluten-free, my daughter's TTG levels are still 'off the charts' high. I am concerned about my daughter's health and am discouraged. I buy all the groceries, read every label, and  I have nearly complete control over everything my daughter consumes, but I am failing to get her TTG numbers down. Her GI doctor believes gluten is the cause of her sky high TTG levels and not a secondary condition.  Since I don't know how else to help my daughter, my husband and I are honestly considering a gluten detection service dog. According to some of these dog trainers, dogs are able to sniff out gluten at minute levels..far below 20 PPM. Does anyone have any experience with gluten detection dogs? Are they worth the price? Can any of you recommend a trainer?? This would be a HUGE expense for us, and I want to make sure it's worth it! Thoughts???

 

2 hours ago, Jenny said:

Good afternoon wise celiac experts! Please help me, I need sound advice! My ten-year-old daughter was diagnosed with celiac (positive bloodwork & endoscopy results) nearly five years ago. During that time, I have been vigilant to eliminate gluten: we don't allow other people to cook for her (with one/two exceptions), we don't allow gluten in our home, and we don't eat out. Still it is not enough. After 5 years gluten-free, my daughter's TTG levels are still 'off the charts' high. I am concerned about my daughter's health and am discouraged. I buy all the groceries, read every label, and  I have nearly complete control over everything my daughter consumes, but I am failing to get her TTG numbers down. Her GI doctor believes gluten is the cause of her sky high TTG levels and not a secondary condition.  Since I don't know how else to help my daughter, my husband and I are honestly considering a gluten detection service dog. According to some of these dog trainers, dogs are able to sniff out gluten at minute levels..far below 20 PPM. Does anyone have any experience with gluten detection dogs? Are they worth the price? Can any of you recommend a trainer?? This would be a HUGE expense for us, and I want to make sure it's worth it! Thoughts???

How can you be sure she's not eating gluten at school? Are you there at lunchtime to monitor her food - or snack - intake? That could very well be the problem. She's old enough to know what she wants and, if one of her friends are eating cookies or other gluten containing items, she may feel left out or deprived because she can't eat the same things. You can never know for sure what she's eating when you're not around. I don't know if they have gluten sniffing dogs, but it won't do any good to get one if she's going to each things she not supposed to anyway. I'm only playing "devil's advocate" so you can look at all sides of the situation.

[Bluesapphire57]

She is 10. I’m assuming you are not with her at school. Is it possible she’s getting gluten there?

[Jenny]

Thank you all for your input! I only have a few minutes to write, so I might not get to all of your comments right now. The first couple years on the gluten-free diet, my daughter still had regular symptoms (GI distress, extreme fatigue, pounding headaches, muscle/joint aches, and much more). Two years into the diet, we made our home gluten-free, and all of her symptoms basically disappeared. Though she still gets a few headaches and is tired a lot, I would characterize her as 'thriving'.

I have never tried the Fasano Diet; however, at times, I have eliminated processed food from her diet. When she eats primarily a whole food diet, she has less fatigue and fewer headaches. As soon as I add processed food (chips, crackers, fruit snacks) back into her diet, her symptoms (though subtle) return. The longest I tried a whole food based diet is probably a 3-4 weeks, which has not been long enough to positively impact her blood-work. 

Thank you for helping me think through this! I'll get to the other questions after my kiddos are in bed :)

 

[cyclinglady]

There is a new stool test  that can help determine if gluten is getting into her diet.  It might be worth pursuing.  

https://glutendetective.com/shop/

A review from a very reliable source:

https://www.glutenfreewatchdog.org/news/gluten-detective-consumer-test-kits-for-detecting-gluten-in-stool-and-urine/

I did not ask, but does she consume any oats?  

[squirmingitch]

The oats is an excellent question. 

[Jenny]

Yes, she eats oats on occasion...maybe 1-2 times a month (Bob's Red Mill gluten-free Oats and sometimes Cheerios). Since she is pretty in-tune with her body and knows when she's feeling 'off', I asked if she has stomach aches after eating oats (her celiac symptoms come on very quickly after she is 'crossed'). She said she never gets sick after eating Cheerios, but sometimes has belly pain after oatmeal. 

Though it's a possible that she's a closet gluten-eater, I don't think its likely. She's a typical first-born child: perfectionist, rule-follower, responsible. Plus, she is very proud to have celiac disease, because she enjoys being a little different from her peers. She reacts very strongly to any CC that she doesn't like to take any risks. If she were cheating, I don't think she'd be able to hide her symptoms from me...she'd be sick as a dog.  Her doc and I have both asked is she has ever cheated on her diet, and she said 'no'. Good question, but I think she's doing the deal!

Could she be getting exposed at school? It's been five years since her diagnosis and her levels have NEVER come down. She's been at the same school, and, of course, different teachers/classroom every year. There haven't been any construction projects at school (she has reacted to drywall dust in the past). She's not using paper mache, Playdooh, or any kind of manipulative with pasta noodles.  There is a classroom pet--gerbil, I believe; she has cleaned it's cage a time or two. I guess she could also be getting exposed from a dirty lunchroom table, too....I'll have to ask her about that. 

[Jenny]

Let me ask you all this: If she's basically symptom free, how concerned should I be about extremely high TTG levels after five years? Are there any long-term risks?

[cyclinglady]

Did you know that some celiacs react to oats, even oats grown and harvested and shipped from dedicated fields?  Did you know that there is a lot of controversy over mechanically sorted oats?  Oats might be the one thing that is keeping her TTG elevated.  

https://www.glutenfreewatchdog.org/news/gluten-free-watchdog-updated-position-statement-on-oats/

Celiac disease is like a chameleon where symptoms can ebb and flow.  If she has fatigue and some minor  headaches, she very well might have active celiac disease.  

[cyclinglady]

9 hours ago, Jenny said:

Let me ask you all this: If she's basically symptom free, how concerned should I be about extremely high TTG levels after five years? Are there any long-term risks?

Most kids on this forum who have had very high TTG results have seen those come down within a year or so.  (You can browse the kid’s section).   If your daughter’s TTG is not coming down, most of us on the forum would assume that she has had repeated gluten exposures.  Another reason could be another autoimmune issue (AI) brewing, but this is not very common.  

What are the risks? Of course there is cancer, but that is rare.  She could have another AI.  Like many of us, we have developed additional AI issues since our celiac disease diagnosis.  The most common are Hashimoto’s and Type 1 diabetes as they share common genes.  She could have osteoporosis like me and I did not find out until I started getting fractures!  Building bone is critical as she becomes a teen.  She could have Refractory celiac disease, but that is very rare and I have seen only one case reported in a child.   She could be a non-responsive celiac, and those patients have discovered that despite their best efforts, they were getting gluten exposures (see last link).  

With the additional information you provided, I would take all oats out of her diet until her TTG result comes down.  Back in the day before the gluten-free craze and all the gluten-free processed foods, celiacs were advised not to eat oats.  Even now, countries like New Zealand do not recommmend oats. 

https://www.coeliac.org.nz/eating-gluten-free/what-about-oats

Canada has their own advice:

https://www.celiac.ca/oats-statement/

Later, US researchers recommended purity grown oats for most celiacs but not all.  They also recommend waiting at least six months (when antibodies levels are down) before trying.  Lately, old timer forum members have been commenting on increased gluten exposures compared to the days without gluten free processed foods.  Even the Fasano diet cuts out most processed foods, including oats and other grains when a patient is not healing.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

I guess  you get the picture that oats should be taken out of her diet for now.  

Celiac disease will not kill your daughter right away, but is very serious.  It is as serious as lupus, Crohn’s or any other autoimmune disorder.  Children used to die from it.  Others had bodies that adapted, but eventually it caught up.  (I have a friend who was diagnosed as a child and told that she would outgrow it.  She never did.  She did become asymptomatic for a few decades.  She was rediagnosed at age 50 and has a lot of health issues.)

Consider the Fasano diet as Karen suggested.  It gives a celiac time to reset so that she might be able to eat more gluten-free foods like oats without issues.

It is a lot to think about.  I am glad your daughter has such caring parents.  You will figure this out!  

 

 

Edited April 11, 2019 by cyclinglady

[squirmingitch]

Just my 2 cents worth but I wouldn't trust a mechanically sorted oat flour if you gave me a free lifetime supply. Having said that, full disclosure, I can't do oats at all, not even purity protocol oats. In the lead up to confirming my problem with oats, I did call Bob's Red Mill & questioned them about their gluten-free oat products & they said they use both purity protocol grown oats AND mechanically sorted oats. Just FYI. Plus we all know about Cheerios & their problems & questions regarding their methods of testing.

I say try the Fasano diet. 

[kareng]

If you let her eat Cheerios and , I am not sure which oats she is getting- maybe she is getting small exposures?  Maybe something else she is eating is not  gluten-free?  I have seen people over the years who really think they are gluten-free but they are eating something that actually is not.  For example, a guy ate corn flakes every morning.  He thought they were just corn, sugar, salt and a bit of preservative/ flavoring .  He didn’t realize the malt sweetener has gluten.  

I have also seen kids who think “ if I can eat that at home, I can eat that at school or a friends house”. .  They don’t realize that not all Rice Krispies treats ( for example) are gluten-free.  

[kareng]

I forgot to ask - did her numbers ever go down?  What do you mean by very high now?

[squirmingitch]

9 hours ago, Jenny said:

Let me ask you all this: If she's basically symptom free, how concerned should I be about extremely high TTG levels after five years? Are there any long-term risks?

But she is not symptom free. Besides your statement here saying, "she's basically symptom free" (emphasis mine), you said earlier:

"Though she still gets a few headaches and is tired a lot"

At 10 yrs old, if she were completely gluten free & has no other diseases, then she should feel fantastic all. the. time.

The TTG numbers are telling you something. That's why you came here and rightly so. You're being a good, concerned parent. Bravo! Now, listen to the numbers & run them down. It is not yet time for a gluten sniffing dog. There are more things to consider before you go there.

Everyone here has given you some great advice.

[Ranchers Wife]

Stop with handling, feeding, and cleaning up after the school gerbil.

I can just about guarantee that the gerbil food has wheat in it.

 

While it's pretty unlikely that she's eating gerbil food, inhaling dust is enough to stimulate an autoimmune reaction in someone with celiac disease. 

 

My husband and I are both celiac. We both have pretty obvious problems with inhaled wheat (or barley, rye or triticale) dust. We live on a cattle ranch. Our symptoms didn't go away until we quit buying cattle feed, minerals and bedding that had any gluten source. We were breathing dust. A little bit of inhaled wheat dust can end up swallowed, and then we both will have our own special gluten exposure symptoms.

Our dogs eat grain free kibble. One dog has to anyway for allergy reasons. But with the dogs eating kibble without gluten ingredients, we are not risking gluten exposure for ourselves from doggy licks, or even just handling the dog food.

 

Other sources of inhalaled gluten would be...

Grain elevator, or wheat fields being harvested near your home

Horses, bedded on wheat straw. Or feeding the horses any sort of grain mix that has a gluten grain or one of it's byproducts.

Chickens... also frequently bedded on wheat straw as well as fed gluten containing grain.

Pets. Definitely the gerbil food. I Googled gerbil food and I haven't seen anything made without wheat in the first three ingredients. Cats? Rabbits? 

Pets can be managed without gluten, but it takes time and attention.

Also, I think you already have your answer about your daughter's health and processed foods. 

[knitty kitty]

"As soon as I add processed food (chips, crackers, fruit snacks) back into her diet, her symptoms (though subtle) return. The longest I tried a whole food based diet is probably a 3-4 weeks, which has not been long enough to positively impact her blood-work. "

Go back to the whole foods diet.  Processed foods can contain a food additive called microbial transglutaminase or "meat glue" and is used to enhance texture and flavors.  It's used in formed meats like hot dogs, chicken nuggets, yogurt, ice cream, and gluten free bread-like products.  Microbial transglutaminase is produced by bacteria and will trigger tissue transglutaminase to be produced in the human body, causing raised tTg levels on blood tests.  

Here's an article that explains it better:

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/full

https://www.glutenfreesociety.org/meat-glue-sabotaging-gluten-free-diet-improvements/

Hope this helps!

 

Edited April 11, 2019 by knitty kitty
Add information

[tessa25]

In your position I would have her switch her cereal and oatmeal over to gorilla munch cereal. It's gluten-free, and corn-based. I would also try a more limited diet for a month and retest the numbers to see if they go down at all. If they're still not going down then I would limit the diet more and see if I can get the numbers to go down. I would definitely have her stop taking care of the hamster. And she probably needs to get better about washing her hands since she's only 10.

I think you would also be helped by purchasing a Nima sensor. You can use it to see if any of the foods she's been eating contain gluten.

I started training my dogs to detect gluten in food, but because I'm stuck on a mostly liquid diet right now I don't have any food in my house for training. So it will have to wait until I can eat solid food again. It takes a lot of work to train a gluten detection dog and to keep their training up. It would be much easier to drop the oats and Cheerios for sure.

[squirmingitch]

https://www.celiac.ca/cca-statement-nima-gluten-sensor/

 

[Jenny]

16 hours ago, kareng said:

I forgot to ask - did her numbers ever go down?  What do you mean by very high now?

In the five years since diagnosis, her TTG has NEVER budged. At diagnosis her TTG & IGG results both came back >100, meaning her levels measured greater then what the test measured. It took three years on the GFD for IGG to get below 100 and has been decreasing steadily since then...IGG is currently at a 29. Her TTG, however, is still >100. If it matters, she is IGA deficient. We are blessed to have an excellent GI Doctor who knows celiac, is thorough, and whom we'll discuss test results with later this month.

[Jenny]

I have to sheepishly admit, I was aware that some celiac's can't handle oats. Since my daughter and husband (not formally diagnosed with celiac, but highly suspected) haven't had immediate reactions to oats, I assumed they were okay. That's what I get for making assumptions! I'll eliminate oats, Cheerios, and anything containing oat flour. Thanks for bringing this to my attention!

I also advised my daughter not to handle the classroom gerbil anymore. She was fine with that.

The Fasano Diet is probably the best option for my daughter...still I'm reluctant. It's the restrictiveness of the diet that gets me. I, selfishly, want to eat a wider variety of foods...stupid, huh?!? And I don't want to be tethered to my kitchen all summer long! I know I'm being a cry baby. I'm going to talk this over with her doctor...I'll let you know what's decided.

[cyclinglady]

1 hour ago, Jenny said:

In the five years since diagnosis, her TTG has NEVER budged. At diagnosis her TTG & IGG results both came back >100, meaning her levels measured greater then what the test measured. It took three years on the GFD for IGG to get below 100 and has been decreasing steadily since then...IGG is currently at a 29. Her TTG, however, is still >100. If it matters, she is IGA deficient. We are blessed to have an excellent GI Doctor who knows celiac, is thorough, and whom we'll discuss test results with later this month.

I am confused.  Both her TTG IgA and TTG IgG were both over 100 at diagnosis?  And she is actually IgA deficient?  If she is not making IgA antibodies, I think her TTG IgA test would be invalid.  To be really IgA deficient,  her test result would be close to zero and not just below the lab range.   Can you clarify?  

Has she ever had the DGP IgA or the DGP IgG tests?  Some researchers think they are better for determining dietary compliance.  What about the EMA?  Any other bio markers (e.g. anemia) that have improved (or not)?  

Five years is a long time.  Enough to to heal if on a gluten diet  (my repeat endoscopy was at five years and revealed healthy, healed villi).    She is either getting gluten into her diet or she has refractory celiac disease which is not good and highly unlikely.

I bet gluten is still in her diet.  

Cooking is not that difficult if you food prep and freeze.  (Watch a few you tube videos on the subject.).  Look at it this way, you have 10 years or so to be cooking for her.  She is going to be tethered to her kitchen for her entire adult life.  Teach her to how to shop, prepare and store food, so that she always has safe and healthy food to eat.  It was not that long ago when everyone was cooking food from scratch.  Maybe even non-celiacs should think about eating real food.  We have an obesity and diabetes crisis probably due to processed foods.  But that is another topic!  

 Again, a reset on the Fasano diet can help her to heal fast and will give you the chance to determine if and how gluten could be getting into her diet. (Again....oats is the likely culprit).  

Hang in there!  

Edited April 12, 2019 by cyclinglady

[cyclinglady]

9 hours ago, knitty kitty said:

"As soon as I add processed food (chips, crackers, fruit snacks) back into her diet, her symptoms (though subtle) return. The longest I tried a whole food based diet is probably a 3-4 weeks, which has not been long enough to positively impact her blood-work. "

Go back to the whole foods diet.  Processed foods can contain a food additive called microbial transglutaminase or "meat glue" and is used to enhance texture and flavors.  It's used in formed meats like hot dogs, chicken nuggets, yogurt, ice cream, and gluten free bread-like products.  Microbial transglutaminase is produced by bacteria and will trigger tissue transglutaminase to be produced in the human body, causing raised tTg levels on blood tests.  

Here's an article that explains it better:

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/full

https://www.glutenfreesociety.org/meat-glue-sabotaging-gluten-free-diet-improvements/

Hope this helps!

 

I have researched this a bit, but I can not determine which US  companies might be using this stuff.  It sounds like it is a cost reduction measure (gluing  scraps of meat or improving inferior/low gluten cheap wheat).  I hope the Gluten Free Watchdog or celiac groups are researching this!  

Here is company who sells this stuff:

https://www.bdfingredients.com/en/transglutaminase-products.html?prod=bdf-probind

[knitty kitty]

3 hours ago, cyclinglady said:

I have researched this a bit, but I can not determine which US  companies might be using this stuff.  It sounds like it is a cost reduction measure (gluing  scraps of meat or improving inferior/low gluten cheap wheat).  I hope the Gluten Free Watchdog or celiac groups are researching this!  

Here is company who sells this stuff:

https://www.bdfingredients.com/en/transglutaminase-products.html?prod=bdf-probind

In the first article I posted, the paragraph above the Conclusion.....

"Academical and Authoritative Warnings on the Potential Harmful Functions of mTg Usage by the Processed Food Industries

The mTg is not labeled, since it is considered as a processing aid, thus escaping the definition of a food additive. Due to the potential detrimental public health aspects, several scientists and organizations issue warnings, trying to increase the awareness of the regulatory authorities, academical communities and the general public on the subject. Following are some citations: “The usage of transglutaminase as a food additive is permitted in some countries. However, its utilization has to be declared to ensure transparency for consumers” Kaufmann et al. (57), “Therefore mTg can enhance the immunogenicity of gluten and should not be used in food products intended for consumption by celiac disease patients” Dekking et al. (66). Not surprisingly, the worries and warnings on mTg nutritional industrial usage safety appear in numerous publications (26, 38, 57, 62, 66–68). More so, at least, in Switzerland and Germany, public warning were issued concerning mTg food safety, recommending labeling of the enzyme (69)1. The warnings mentioned the risk of mTg consumption by celiac disease patients, “Suitable labeling of foods produced using mTg would enable these patients to avoid the uncertainties that the scientific community has yet to clarify”1."

 

So, they get away with not labeling mTg on ingredients labels because mTg is used in "processing" and not as an ingredient.