elevated TTG after 2 years of gluten-free diet in 6 year old

[CeliacMommaX2]

My daughter's labs have been the following:

diagnosis:  TTG 69, EMA >1:320

6 months gluten-free:  TTG 73, EMA 1:80

12 months gluten-free:  TTG 81, EMA 1:80 (we eliminated even gluten-free oats at this point)

18 months gluten-free:  TTG 41, EMA 1:20

2 years gluten-free:  TTG 64, EMA 1:20

Her TTG levels are right where we started at diagnosis 2 years ago!  We are a strictly gluten-free household  (including all lotion/shampoo/soap) and she is homeschooled and never eats out.  I would be shocked if even cross contamination were an issue.  She has never showed symptoms of being glutened.  I know other autoimmune diseases can elevate TTG levels... her thyroid levels and glucose are fine.  Anyone have any idea what to ask of the doctor?  I feel like we are doing nothing but drawing labs every 6 months while we are continuing to have elevated labs.  Is she healing?  Should we ask for another biopsy?  Anyone have any similar experiences or advice?  

We are also exploring the idea of going to Chicago or some where that there is more expertise in the Celiac world.  Any suggestions (we're in Michigan)?

Update:  We just had her GI appointment and the doc said we are just going to check again in 6 months.  No further changes to diet (gluten and oats free only right now).  She didn't seem concerned since she is maintaining on her growth curve.  The doc seemed to not have a lot of faith in the labs and gave a lot of excuses for why they were still elevated (technician error, not intended for monitoring...)

I would still love to hear others opinions and experiences if they have any!  I'm desperate to do something to help my little girl get better!!!

[cyclinglady]

Have you considered a very strict diet?  Read this about trace gluten contamination.  For those patients who are unresponsive, Dr. Fasano (leading celiac disease researcher/Ped GI) recommends this gluten-free diet.

Open Original Shared Link

Consider asking your doctor for the DGP.  

I am at a loss (as you are too)!  Some celiacs seem to be very sensitive and the 20 ppm does not work for them.  That is why I suggested the strict not processed foods for a while.  Something she is eating might not be as gluten free as you think.  

I hope you figure it out! 

 

 

[Posterboy]

CeliacMommaX2,

Your children may be reacting to corn in their diet.

Here a post that talks about this possibility in addition to Oats - Corn can trigger IgA immune response in some Celiacs.

Also  you might have them checked for Pellagra some Celiac's also have co-morbid Pellagra and it can contribute to a poor GI response even when someone is 100% gluten free.

Celiac.com recently featured an article about why/how this might be so.

See this article https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

I have also blogged about my experience with Pellagra on celiac.com just search for the posterboy on celiac.com and my blog posts will come up about how many of my GI symptom's got better after taking Niacinamide or as I like to think/say I am a Celiac who also developed Pellagra.

***this is not medical advice only my own personal experience

I hope it helps you the way it seemed to help me.

I recommend people be tested before beginning any Vitamin so any cases of Pellagra and Celiac disease occurring in the same person can be documented.

Since I was not tested before I begin taking Niacinamide I can only advocate that others be tested to rule it out.

So if it is Pellagra undiagnosed you won't be fighting a two front war as you seem to be doing now.

I am Not sure what else in your kids diet  is causing GI problems as indicated by high TTG levels.

But I would look first at the corn then also maybe test to see if it is possible a B-Vitamin deficiency might be triggering some of these issues.

It is not as far fetched as it seems.

The gluten free works site talks about what low niacin levels look like and how eerily similar are the GI problems a Celiac has looks like in people who have it.

Open Original Shared Link

New research validates that low Niacinamide in pregnant mother influences Ezcema in their babies.

see this link about this new ground breaking research about how inherited B-Vitamin deficiencies can affect the health of our children.

Open Original Shared Link

So it seems plausible any deficiency you might of had could of been passed on to your children.

And doctor's unfortunately don't know to look for Pellagra any more today and therefore don't find it.

see Dr. Heaney's blog post on why this is so.

Open Original Shared Link

quoting and I couldn't agree more.

"In the United States, at least .  . . it is doubtful today that most health professionals would recognize it (Pellagra) if a case happened to come to their attention." today.

But is it easy enough to check for with a blood test or sometimes a 24 hours urine test is also used.  You don't have to have all the D's of Pellagra to diagnosis it.  ONLY  one of the D's (Digestive) can confirm a diagnosis.

In fact the MD guidelines website notes that if you have only one of the D's of Pellagra it is better to have the dermatitis problems or doctor's have trouble identifying it as a Niacin(amide) deficiency today.

Open Original Shared Link

Quoting " The diagnosis of pellagra is straightforward when the classic rash (eczema my words) is present but may be elusive if there are only gastrointestinal and/or neurological manifestations." as the new research I cited above is bearing out.

They forgot what they knew 75+ years when Pellagra was eradicated from the general public and no longer recognize it when it present's other than as a skin disease today.  Pellagra is Italian for rough/sour skin as first described in Italy before Niacinamide was isolated as it cause.

The 3 D's of Pellagra are not all separate diseases but one Parent disease with many children like dermatitis issues and/or dementia issues and/or GI issues.

I hope this is helpful and good luck on finding out what (else) might be triggering the high TTG levels.

Sorry for the long post but I am trying to educate here about why and how Pellagra is often misdiagnosed as Celiac disease today  and sometimes that takes some background information to understand not only what is happening but WHY it is happening.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

 

[GF-Cheetah Cub]

You are not alone.

My daughter also has elevated TTG after 3 years on very strict gluten-free diet.   My household is also gluten-free.   My daughter is a silent celiac.   So, I have the NIMA gluten tester, and also use the EZ Gluten test kits to test outside foods.

I understand that you are careful with her gluten free diet, as we are careful with our gluten free diet.   This is just frustrating!

We were offered to do another endoscopy to see if there are still damages to her stomach lining.   But we decided against that.   Because she is growing, and gaining height.

My daughter does have Type 1 diabetes, and this can contribute to her elevated TTG. 

I suppose if you really want to know if your child is healing, you can ask for another endoscopy, and see if there are still damages there.   Or just keep going with your gluten-free diet, as long as your child is healthy and growing normally.  

 

[knitty kitty]

Celiac MommaX2,

Do you and your family consume manufactured gluten free products?  I tried some of them and found that I have trouble with products made with corn and potato flour.  In researching, I came across a scary food additive.  Here's a couple of articles.

Open Original Shared Link

Open Original Shared Link

These articles explore how this food additive used in gluten free products causes an immunological response. The food additive is transglutaminase.  Yep, people make tissue transglutaminase as part of an immunological response.   But this additive is produced by genetically engineered bacteria.  It is used in gluten free breads to get that doughy texture. It is also used in sausage and formed meats like luncheon meats and is referred to as "meat glue". It is used in yogurt to get a creamy texture.  While it may improve the taste, eating lots of stuff with this additive can't be good. 

I hope this helps us on our Celiac journey.

Kitty

 

 

 

 

[cyclinglady]

9 hours ago, knitty kitty said:

Celiac MommaX2,

Do you and your family consume manufactured gluten free products?  I tried some of them and found that I have trouble with products made with corn and potato flour.  In researching, I came across a scary food additive.  Here's a couple of articles.

Open Original Shared Link

Open Original Shared Link

These articles explore how this food additive used in gluten free products causes an immunological response. The food additive is transglutaminase.  Yep, people make tissue transglutaminase as part of an immunological response.   But this additive is produced by genetically engineered bacteria.  It is used in gluten free breads to get that doughy texture. It is also used in sausage and formed meats like luncheon meats and is referred to as "meat glue". It is used in yogurt to get a creamy texture.  While it may improve the taste, eating lots of stuff with this additive can't be good. 

I hope this helps us on our Celiac journey.

Kitty

 

 

 

 

Ugh!  This is a topic that should addressed in a separate thread (just so we don't hijack this thread). Why?  There is a lot to talk about!  I read your links and then to a commercial site selling this "glue".  While I had heard about gluing cuts of meat together, I did not know they used it in dairy and bakery products -- especially gluten free breads. 

Take the credit Kitty and start another thread!  

[knitty kitty]

Cyclinglady,  

I'd enjoy continuing this branch of conversation in another thread. I've started a new thread under Related Disorders and Research.

Many thanks,

Kitty

 

[mararobinson]

I'm with the gluten-free cheetah cub above.  It took my teenage daughter 3 years to bring her TTG level down to a 6! It was greater than >200, and it just took that long to come down.  While the GI told me that wasn't good enough (this lab wanted <4 as normal!), I thought this was close enough since my daughter was asymptomatic and was growing!  We met with a nutritionist who suggested cutting out processed food and cutting back on gluten-free labeled foods as they even contain gluten...1-19ppm can add up, she said.   We try to eat as cleanly as possible, but for a teenager, that is just not easy.  It's hard enough for them to eat differently than others with their own gluten-free foods.

GI suggested repeat endoscopy but after a lot of thought and research (see link below!), we decided against it.    What would I do differently if her gut isn't completely healed? She is as gluten-free as it gets, and to restrict her diet like the Fassano diet recommends is unrealistic in a busy active teenager.  Open Original Shared Link

I think there is a paucity of research on the healed intestine....they have a long way to go.  Most people with Celiac probably don't follow their TTG levels and their intestines, and just go with how they feel, thus data is lacking.  

How is your daughter feeling? 

Please keep us posted on how you proceed.   

[mararobinson]

On 3/23/2017 at 7:26 PM, gluten-free-Cheetah Cub said:

You are not alone.

My daughter also has elevated TTG after 3 years on very strict gluten-free diet.   My household is also gluten-free.   My daughter is a silent celiac.   So, I have the NIMA gluten tester, and also use the EZ Gluten test kits to test outside foods.

I understand that you are careful with her gluten free diet, as we are careful with our gluten free diet.   This is just frustrating!

We were offered to do another endoscopy to see if there are still damages to her stomach lining.   But we decided against that.   Because she is growing, and gaining height.

My daughter does have Type 1 diabetes, and this can contribute to her elevated TTG. 

I suppose if you really want to know if your child is healing, you can ask for another endoscopy, and see if there are still damages there.   Or just keep going with your gluten-free diet, as long as your child is healthy and growing normally.  

 

Hi, same story here.   However, my daughter does not have diabetes....Which came first Diabetes or Celiac? 

My daughter's TTG is now at 6, and GI wants her to get it below 4.  (What!?!? I was high fiving my daughter that she finally got to a 6 after being greater than 200, and is now 4'11!)

We decided to forgo the endoscopy as well.  Have you seen this article?  Open Original Shared Link

[GF-Cheetah Cub]

11 hours ago, mararobinson said:

Hi, same story here.   However, my daughter does not have diabetes....Which came first Diabetes or Celiac? 

My daughter's TTG is now at 6, and GI wants her to get it below 4.  (What!?!? I was high fiving my daughter that she finally got to a 6 after being greater than 200, and is now 4'11!)

We decided to forgo the endoscopy as well.  Have you seen this article?  Open Original Shared Link

We were diagnosed with Diabetes first, but I think she already had celiac prior.  

Our doctor told us that she has celiac only 3 months after diabetes.   Her TTG was off the chart high.   Our endo offered to formally diagnose her with celiac without the endoscopy, but I refused to believe she had celiac.   She had no symptoms.   An endoscopy confirmed it.   We went gluten free.  She still is a silent celiac.  

We would never know about her celiac if it weren't for her type 1 diabetes.   They did all sorts of blood test on her.   I think her ttg was already off the chart high when she was first diagnosed with diabetes, but since the diabetes is so overwhelming at first, they simply waited 3 months before telling us about the celiac too.  I think this was a kind thing to do.

Looking back, she did have a symptom, she stopped growing for a little over a year!   My daughter was always tall for her age, she was a huge toddler, 90th percentile.   One of the tallest kids in her class, then suddenly, I noticed that she became the shortest among all her friends.   At the time of her diagnosis, she was 10 years old, and was only 25th percentile in height.  

She is 13 now, and is growing and gaining height.   She is about 5' 2" now.  So while she does not get sick with gluten, we take her gluten free diet very seriously.   Our TTG has been dropping continuously over the 3 years, and it is getting VERY close to be under normal range.   Just on the border, but not quite there...yet.

[CeliacMommaX2]

Thank you, everyone for your input and for all of the helpful links and personal experiences.  At first, we thought we would just follow the doctor's instructions and not change anything and check more labs in 6 months.  But it is soooo hard not to DO something!  Yet, she doesn't seem to be having any symptoms.

What is everyone's thoughts on proposing this to her GI doc:  cut quinoa for a month, check labs; then cut corn for a month, check labs.  Is a month long enough to see a change?

[knitty kitty]

On 4/2/2017 at 7:54 PM, CeliacMommaX2 said:

 

Some Celiacs find improvement after they take corn out of their diets.  

"Maize is one of the most commonly consumed grains in the gluten-free diet. Despite the low content of zeins in maize-containing foods compared with that of gliadins in wheat-containing foods, maize could be responsible for persistent mucosal damage in a very limited subgroup of celiac disease patients. "

Open Original Shared Link

As I mentioned earlier, the food additive transglutaminase, often used in gluten free breads and cookies and other products to enhance texture, may also exacerbate symptoms.  

I took corn and processed gluten free foods out of my diet and noticed improvement within a few days.  I found the Paleo AutoImmune Protocol (AIP) diet helpful.  I can't tolerate fermented foods because of an allergy to Sulfites, so I excluded those, and did well.  

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Celiac Disease has been ignored for many years.  Figuring out how to diagnose it and how to track its progress or remission by serology is fairly new, too. They don't know exactly what to test for.  The study linked above concludes:

"Nearly 1 in 5 children with celiac disease in our population had persistent enteropathy despite maintaining a gluten-free diet and immunoglobulin A tTG was not an accurate marker of mucosal recovery. Neither the presence of symptoms nor positive serology were predictive of a patient's histology at the time of repeat biopsy. These findings suggest a revisitation of monitring and management criteria of celiac disease in childhood."

Here's another: 

Open Original Shared Link

Celiac Disease is a marathon, not a sprint.  You're only a year in.  Most recovery takes two or more years.  

Open Original Shared Link

Don't live by the numbers on a test.  Stress hinders healing.  Go by how you feel.  And give yourself that most precious gift, time...time to heal. 

Hope this helps. 

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