After a year of gluten-free diet, tTG-IgA is 121

[Rhyo9]

My daughter was diagnosed a year ago and we all went gluten-free - no gluten in the house; she was also diagnosed with Oral Allergy Syndrome. Her symptoms (mainly vomiting) improved after making appropriate diet changes and also using home HEPA air filters. However, a few months ago she developed a bit of a rash on her fingers that looks like dermatitis herpetiformis. She went for a follow up last week and her tTG-IgA was 121.

I just bought some EZ Gluten test strips to test some 'gluten free' labelled food items & she's asked for the IgG test/further follow up.

What else should we be doing?

[cyclinglady]

Hi!  
 

It sounds like she is improving.  Her TTG did come down from a 170 and she has stopped vomiting, right?  (If I recall, was a Marsh Stage IIIA.)  Doctors use the antibodies for follow up testing but they were not really designed to monitor progress or diet.  They look for a downward trend.  One year into the diet is not very long as damage can be systemic (beyond the gut) and the diet can be difficult.  Does she consume oats?  Does she ever eat outside of the home?

DH really needs to be biopsied or at least confirmed by a dermatologist.  I do not have DH, but I know that even a seasoned DH member would not guess that the rash was DH even after looking at a photo.  I do understand (read the DH section of the forum) that those who have DH are extra sensitive and 20 ppm might be too much for them).  Other than the rash, is she doing well?  Gaining weight?  
 

Maybe she needs more time.   If really concerned, considered what we call the Fasano diet for a few weeks.  
 

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

[Rhyo9]

Thanks for you reply - I felt better reading it. I realize I had been overly negative about the results.

She has regained all her weight (from 80 to 98 lbs; she's 5' 1") and is no longer vomiting or anemic. Sometimes she does experience early satiety, however, and she is tired much of the time and sleeps a lot.

No oats - it seemed best to stay away from them since she has that OAS cross-reactivity problem. She does consume corn, teff and sorghum and also some processed food items that are labelled gluten free but not gluten-free certified. We don't eat out. I was going to use the EZ test strips to test all the processed food items. Thanks for the link to the article, it's very helpful.

It is truly odd that I have not learned more about Celiac since I have something of an obsessive interest in certain areas of biological sciences and read several scientific papers per week.  I tend to feel very depressed when I try to read up on Celiac.

 

[DJFL77I]

mine was 100 at newly diagnosed in June while still devouring gluten daily...  

not sure what its at now at 2 months and 2 weeks gluten free...     how long does it take to drop?

[DJFL77I]

try stop eating packaged food unless that testing thing shows no gluten

[cyclinglady]

2 hours ago, DJFL77I said:

mine was 100 at newly diagnosed in June while still devouring gluten daily...  

not sure what its at now at 2 months and 2 weeks gluten free...     how long does it take to drop?

Your doctor can check you at six months.  But it can take over a year for blood tests to normalize, sometimes two years.  Doctors look for a downward trend.  

[DJFL77I]

Why are some people's higher

[cyclinglady]

4 minutes ago, DJFL77I said:

Why are some people's higher

Everyone can have a different antibodies response.  It could mean more damage, but sometimes not.  

[Scott Adams]

7 hours ago, DJFL77I said:

mine was 100 at newly diagnosed in June while still devouring gluten daily...  

not sure what its at now at 2 months and 2 weeks gluten free...     how long does it take to drop?

I am not making any accusations here, but another possibility is that she could be cheating on her diet, or getting accidental gluten. In my experience having a teenage daughter, it was her cheating that caused her antibodies to stay high. This drove me nuts for a while, and after I realized that I really could not control her I at least got her to agree to take AN-PEP (GliadinX) enzymes whenever she does cheat. I will have her antibodies measured again on her next checkup. My approach is not a green light for my daughter to eat gluten, just a crutch for a situation that I can't fully control. There is no guarantee that the enzymes will compensate for her occasional deviations, but taking them will not hurt her, and there is a good deal of evidence that it will help. So in my case I thought I was doing everything right and was keeping my daughter 100% gluten-free, only to discover that she was having a slice of pizza or something when she was at a friend's house, or after a soccer game. 

[DJFL77I]

14 hours ago, Scott Adams said:

I am not making any accusations here, but another possibility is that she could be cheating on her diet, or getting accidental gluten. In my experience having a teenage daughter, it was her cheating that caused her antibodies to stay high. This drove me nuts for a while, and after I realized that I really could not control her I at least got her to agree to take AN-PEP (GliadinX) enzymes whenever she does cheat. I will have her antibodies measured again on her next checkup. My approach is not a green light for my daughter to eat gluten, just a crutch for a situation that I can't fully control. There is no guarantee that the enzymes will compensate for her occasional deviations, but taking them will not hurt her, and there is a good deal of evidence that it will help. So in my case I thought I was doing everything right and was keeping my daughter 100% gluten-free, only to discover that she was having a slice of pizza or something when she was at a friend's house, or after a soccer game. 

Yes that's what I thought too..  she's probably stuffing her face at McDonald's on the side..   

those numbers would have dropped a lot more after a year I think .. 

[Rhyo9]

um, no - she is not cheating

She has not left the house since mid-March except to go to her high school to pick up her diploma with her father and to her doctor's appointment, also with dad since she does not drive. Prior to the pandemic, she took food with her to school and social gatherings, including her college scholarship interview (which she won - for a major in studio art, as well as a general academic scholarship).

She is in general an extremely conscientious person and despite being a creative, she fits the  'Parkinson's Disease personality type' to a T (except for the punctuality). Her hospitalization experience was so horrific I am doubtful she will ever knowingly stray from the gluten-free diet as long as she lives. She still has nightmares about her bout of neuroleptic malignant syndrome (adverse reaction to Reglan) - as do I.

[RMJ]

My antibody levels are very susceptible to gluten contamination.  I started by not eating anything with gluten-containing ingredients.  Levels were lower, but still high.  Then I went to making sure everything said gluten free.  Levels lower but some still high.  Now I only eat processed food that is certified gluten free.

What level of gluten free is her diet?

[Rhyo9]

For processed stuff I try to get gluten-free certified, but some items are just labelled gluten free; most of those claim to be batch tested. One exception was pesto which did not have any gluten ingredients - she had that one time a few weeks ago. The garlic salt we use is also not labelled gluten-free, but does not have any gluten ingredients. I tested it last night and and the H line was very faint - if absent, it means high positive. I am going to contact the test strip company for help interpreting it - I suspect it is probably negative and the high salt content may have affected the reaction - OTOH  the C line was quite visible.

We try to eat mostly whole foods. I use dried beans - I need to do that anyway since they need to be well cooked due to her OAS and sometimes the canned ones are a bit undercooked. I was getting Eden brand black beans which are labelled gluten-free, but they are out of stock. I pick over them carefully and rinse several times. I don't bother with lentils since I have seen wheat berries mixed in - I wish Eden would offer gluten-free lentils.

Because her diet was so restricted she decided to stop being ovo-lacto vegetarian and now eats fish and chicken one night a week each.

Saturday night is frozen food night and she had Freschetta pizza, which is labelled gluten-free. I cut off a sliver and will grind it up somehow and test later. So far I have gotten negative results for Anthony's teff flour, Otto's cassava flour, Amy's traditional refried beans, Arrowhead Mills cornmeal, corn Chex cereal.

I'm trying not to give her too much rice / rice products due to the arsenic. With all the x-rays she received (she threw up her feeding tube everyday and since they had her on PPIs they had to check tube placement with x-ray and sometimes would do it 3 times for one insertion), I am quite worried about cancer.

We eat sorghum and she does not like it. I'm somewhat concerned about mold as sorghum has a reputation for being moldy - I haven't seen it on the grains but perhaps its not something that is easily seen. It's on the list for gluten testing. Sorghum has some positives - has a lot of fiber and I've noticed a nitric oxide releasing effect, probably due to the polyphenols ('m very sensitive) - and that's just from white sorghum (black sorghum bran is sold as a supplement - I tried it once and got an NO flush).

We eat frozen vegetables - I boil them since everything has to be cooked to death because of her OAS. She prefers frozen to fresh since they seem to hold up better; I'm not sure why that is - it may have to do with the blanching process. The Fasano diet lists frozen veg as a 'no'; I will be testing our frozen veg.

Corn may perhaps be an issue as I have seen an article  suggesting some people may have cross-reactivity to maize prolamins - I don't know what to do about it since I make cornbread and she has it for dinner each night. She also likes corn Chex cereal  and corn tortillas (which I will be testing).

 

 

[RMJ]

Sounds like you’re being very careful!  

[DJFL77I]

i dont trust anything processed

[chocoholic]

My tTG-antibodies were 30x the upper normal limit at diagnosis, and 6 months later still above normal (but it was a different lab with a different measuring unit, hard to compare). 2 weeks ago was my 1-year anniversary and the ABs were finally in the 'negative' range. I'm telling you this because I was quite concerned at the 6-month mark and them still being high. Everywhere I read, it said the ABs would be down by then. So you can't necessarily compare to others; it may just take a little bit longer. 

I would not insinuate that your daughter is cheating. I was very conscious of everything I ate, never ate out, no oats, few packaged things, and still it took this long for me.

One of my liver values has been abnormally high for years and has further increased to an extreme level even as tTG-ABs have normalized. So with me there is something additional happening, and my faulty liver may have made it more difficult to help excrete the ABs. Perhaps have your daughters liver values tested as well, if you haven't already.

 

[DJFL77I]

I think liver enzymes are always included in regular bloodwork

Oats would not cause antibodies to be produced ??

My liver enzymes were a bit elevated when I first went to see the doc.. then about a month later they cut in half by like 50%+..  asl was like 24.. atl was 55

That was before I was diagnose. Dr said it was the gluten..  

[Rhyo9]

Her liver enzymes were elevated just after she came home from the hospital but went down after a few weeks. Her integrative doctor (no longer sees him since he had IMO some really bad ideas) suggested NOW Liver Refresh, but we declined to use it since it includes a lot of different herbs - some of which are not well-studied. Instead I gave her MitoQ, which has had a bunch of clinical trials - including one that showed improved liver function in hepatitis patients. Perhaps her levels would have normalized anyway. Recently I switched her over to ubiquinol since it is cheaper and has more studies than MitoQ - though perhaps not as effective. She is a carrier for a fatty acid oxidation disorder gene. Being a carrier is not supposed to cause problems, but I started having symptoms in my late teens. She didn't have her liver enzymes checked at her last appt and I wish she had; her Dr doesn't believe in testing unless absolutely necessary. Her current Dr is an adolescent medicine specialist; I think she needs a gastroenterologist and would like to find a good integrative doctor for her, also.

~

Some people react to avenin in oats, which is similar to gluten. In Australia doctors say not to eat any oats, not even gluten-free certified. In Canada they say to limit gluten-free oat consumption to 50 - 70 g / day for adults. Mayo Clinic says gluten-free oats should be okay for most Celiacs.

Since she has the cross-reactivity problem with OAS (which may indicate a general tendency to cross-react), I figured it would be safer just to avoid oats altogether.

[knitty kitty]

I hope this article gives you some insight and help with your daughter's liver problems.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4849418/

I found the information on Vitamin A and Niacin very informative.

 

[Beverage]

On 9/6/2020 at 8:50 AM, Rhyo9 said:

We try to eat mostly whole foods. I use dried beans - I need to do that anyway since they need to be well cooked due to her OAS and sometimes the canned ones are a bit undercooked. I was getting Eden brand black beans which are labelled gluten-free, but they are out of stock. I pick over them carefully and rinse several times. I don't bother with lentils since I have seen wheat berries mixed in - I wish Eden would offer gluten-free lentils.

Beans are naturally gluten free, but one of the most cross contaminated foods because they are often rotated with barley or other gluten grains in growing in the fields.  Buy only beans, dried or canned, labeled gluten free.  I purchase from Nuts.com, they have a gluten free section.  Sign up for their newsletter and they have discounts from time to time.

https://www.beyondceliac.org/gluten-free-diet/is-it-gluten-free/beans/

https://www.verywellfit.com/gluten-free-beans-562373

 

 

 

[Svelte]

My antibodies went from 250+ to about 22 after 9 months.  Does she use lip balm or lipstick that has gluten in it?  I even changed my hand cream as that often has gluten in it.

It sounds like your doing all the things right on diet.  As a general rule spices are gluten free.  Soya sauce is one thing that usually has gluten in it that isn't obvious.

[DJFL77I]

I mentioned your case to my new GI Doctor..   he said those  numbers are not good after a year.. He said she is most likely still getting Gluten somehow...   they are more concerned about that with females than males because girls wear make up and stuff

[DJFL77I]

I would take a close look at what she's doing..  dont be so trusting of a teen

[Rhyo9]

Thanks for your input & for asking your doc about it. I will check her personal care products; she only rarely wears makeup (she did not go out much before the pandemic and now not at all). She doesn't purchase anything herself. There are old products she has left over from the 'before time', however. Another thing I have thought of is that we used to use Sweet Scoop cat litter & there could still be dust, but before she came home from the hospital I got rid of it, got a new litter box, a new vacuum cleaner with HEPA, vacuumed everything a couple of times, washed bedding & dusted. I will look into surface testing with the EZ Gluten kit.

[Svelte]

This is starting to get into the far fetched range, but cat food often has gluten in it and one of my cats likes to drink from my water glasses I have laying around after she eats.  I switched my water glasses to have lids.