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Hello everyone, :)

This is my first post on this website so I hope I can find someone who has had the same problem as me. My biggest question has to deal with the Celiac Reflex Panel and the Tissue Transglut Ab IgA results. I was diagnosed with Celiac the first of the year in 2017, so I have only been Gluten Free for a year. I did my labs on March 2nd because I see my Gastro provider at the end of this month (my lab results are below). My question is how long does it take to see the Tissue Transglut Ab IgA decrease!?!? :angry: I am starting to get really upset and irritated that it has not changed at least a little since 2017. I am on a real strict gluten free diet because of the symptoms that I had (Ex: Dermatitis Herpetiformis, Vit D Deficiency, Swelling in feet and ankles, Bloating, and so). So I know that I am eating correctly and I even watch out for cross contamination, its just sad to see my results not change. :(

My Gastro provider did call me and stated that some people with Celiac have a hard time healing compared to others, which I understand, but really a year and no change? Just wondering how long it took some people to finally start to heal? 

My last question was, does anyone know what Refractory Celiac Disease is? My Gastro provider told me that he will wait another 6 months before doing my labs and at that point if my Tissue results are still high then he will do another Endoscopy and check for this Refractory Celiac Disease? 

Thank you so much to everyone for your advice and thoughts. They really help! :D

Thank you, 

-CatAli

image.png.fb00dd0a216e6829fac356b6f2da819e.png

 

 

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Posted (edited)
43 minutes ago, CatAli said:

Hello everyone, :)

This is my first post on this website so I hope I can find someone who has had the same problem as me. My biggest question has to deal with the Celiac Reflex Panel and the Tissue Transglut Ab IgA results. I was diagnosed with Celiac the first of the year in 2017, so I have only been Gluten Free for a year. I did my labs on March 2nd because I see my Gastro provider at the end of this month (my lab results are below). My question is how long does it take to see the Tissue Transglut Ab IgA decrease!?!? :angry: I am starting to get really upset and irritated that it has not changed at least a little since 2017. I am on a real strict gluten free diet because of the symptoms that I had (Ex: Dermatitis Herpetiformis, Vit D Deficiency, Swelling in feet and ankles, Bloating, and so). So I know that I am eating correctly and I even watch out for cross contamination, its just sad to see my results not change. :(

My Gastro provider did call me and stated that some people with Celiac have a hard time healing compared to others, which I understand, but really a year and no change? Just wondering how long it took some people to finally start to heal? 

My last question was, does anyone know what Refractory Celiac Disease is? My Gastro provider told me that he will wait another 6 months before doing my labs and at that point if my Tissue results are still high then he will do another Endoscopy and check for this Refractory Celiac Disease? 

Thank you so much to everyone for your advice and thoughts. They really help! :D

Thank you, 

-CatAli

image.png.fb00dd0a216e6829fac356b6f2da819e.png

 

 

I can't see that you are really as gluten-free as you might think you are.  Those are very high.  Before you go to Refractory, the doctor should recommend the Fasano elimination diet.  That works for those with no response to a gluten-free diet.

 

 

Edited by kareng
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Posted (edited)
48 minutes ago, CatAli said:

Hello everyone, :)

This is my first post on this website so I hope I can find someone who has had the same problem as me. My biggest question has to deal with the Celiac Reflex Panel and the Tissue Transglut Ab IgA results. I was diagnosed with Celiac the first of the year in 2017, so I have only been Gluten Free for a year. I did my labs on March 2nd because I see my Gastro provider at the end of this month (my lab results are below). My question is how long does it take to see the Tissue Transglut Ab IgA decrease!?!? :angry: I am starting to get really upset and irritated that it has not changed at least a little since 2017. I am on a real strict gluten free diet because of the symptoms that I had (Ex: Dermatitis Herpetiformis, Vit D Deficiency, Swelling in feet and ankles, Bloating, and so). So I know that I am eating correctly and I even watch out for cross contamination, its just sad to see my results not change. :(

My Gastro provider did call me and stated that some people with Celiac have a hard time healing compared to others, which I understand, but really a year and no change? Just wondering how long it took some people to finally start to heal? 

My last question was, does anyone know what Refractory Celiac Disease is? My Gastro provider told me that he will wait another 6 months before doing my labs and at that point if my Tissue results are still high then he will do another Endoscopy and check for this Refractory Celiac Disease? 

Thank you so much to everyone for your advice and thoughts. They really help! :D

Thank you, 

-CatAli

image.png.fb00dd0a216e6829fac356b6f2da819e.png

 

 

I test positive on only the DGP IgA (even on follow-up testing which I have done several times, but usually when I have experienced “glutening” symptoms.  My DGP IgA is usually off the charts, worse than when I was diagnosed.  So disheartening!  After five years and thinking, like you, that I am doing either a poor job of avoiding gluten, am super sensitive  or I have refractory Celiac Disease, I caved in and had an endoscopy.  The results?  All healed!  I even saw the villi.  

My GI and I concluded that I probably did get glutened a few times in the past five years, but the endoscopy did reveal chronic autoimmune gastritis.  That was the cause of current my symptoms even after I went on a modified Fasano diet (I did not give up coffee) last Fall.  At the time my DGP IgA was elevated, so were my thyroid antibodies.  That might have impacted my antibodies results, but no one knows. There is no much research on after care for celiac disease.  There is not much research being done or being funded for celiac disease at all!  

After my endoscopy, I attended a lecture with Dr. Sheila Crowe (UCSD and 2017 American GI Association President) and Melinda Dennis (celiac, dietician and  author who works out of Boston at their celiac center).  Melinda mentioned that antibodies testing after diagnosis has not been accurate, but that it is the only tool in the tool box that is non-evasive.  

I think you have to go by your symptoms.   You would think that if your DH is not flaring, then you  are doing a great job avoiding gluten.   If your DH is acting up, consider the Fasano diet and do not eat out.  Know that continued elevated antibodies it could be attributed to another AI issues or that they just take a very long time to get down (years) for some people.  Do get the endoscopy if your symptoms are not resolving.  It might be something not related to celiac disease.   

 

Edited by cyclinglady

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also

Google "Indications and Use of the Gluten Contamination Elimination Diet for Patients with Non-Responsive Celiac Disease".    Maybe this link will work

www.mdpi.com/2072-6643/9/10/1129/pd

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1 hour ago, cyclinglady said:

I test positive on only the DGP IgA (even on follow-up testing which I have done several times, but usually when I have experienced “glutening” symptoms.  My DGP IgA is usually off the charts, worse than when I was diagnosed.  So disheartening!  After five years and thinking, like you, that I am doing either a poor job of avoiding gluten, am super sensitive  or I have refractory Celiac Disease, I caved in and had an endoscopy.  The results?  All healed!  I even saw the villi.  

My GI and I concluded that I probably did get glutened a few times in the past five years, but the endoscopy did reveal chronic autoimmune gastritis. That was the cause of current my symptoms even after I went on a modified Fasano diet (I did not give up coffee) last Fall.  At the time my DGP IgA was elevated, so were my thyroid antibodies.  That might have impacted my antibodies results, but no one knows. There is no much research on after care for celiac disease.  There is not much research being done or being funded for celiac disease at all!  

After my endoscopy, I attended a lecture with Dr. Sheila Crowe (UCSD and 2017 American GI Association President) and Melinda Dennis (celiac, dietician and  author who works out of Boston at their celiac center).  Melinda mentioned that antibodies testing after diagnosis has not been accurate, but that it is the only tool in the tool box that is non-evasive.  

I think you have to go by your symptoms.   You would think that if your DH is not flaring, then you  are doing a great job avoiding gluten.   If your DH is acting up, consider the Fasano diet and do not eat out.  Know that continued elevated antibodies it could be attributed to another AI issues or that they just take a very long time to get down (years) for some people.  Do get the endoscopy if your symptoms are not resolving.  It might be something not related to celiac disease.   

 

Hello Cyclinglady, 

Thank you for your advice! You do bring up a good point in regards to go by "your symptoms". I told my Gastro provider that I feel fine. I have had no symptoms compared to how it used to be when I first started this "journey". I have never heard of the Fasano Elimination Diet but I will definitely bring it up to my Gastro at the end of this month.

I honestly hope that my symptoms do resolve or at least my Celiac lowers in some way. I do not want it to be anything worse, that's for sure! I need to do some research on Chronic Autoimmune Gastritis. I have never heard of that either, then again I never heard about a lot of this autoimmune disorders until a year ago anyways. But you are right, there is not a whole lot of research on Celiac Disease. Its pretty sad really. 

Have you felt better? Now that you know it was Chronic Autoimmune Gastritis? Did you do anything else with your diet? 

Thank you again for your advice and thoughts on this subject. I need to do some research now. Haha. Thank you again. 

-CatAli 

 

 

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1 hour ago, kareng said:

also

Google "Indications and Use of the Gluten Contamination Elimination Diet for Patients with Non-Responsive Celiac Disease".    Maybe this link will work

www.mdpi.com/2072-6643/9/10/1129/pd

Hello Kareng, 

Thank you for the link, I will read this today! :) 

-CatAli 

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2 hours ago, kareng said:

I can't see that you are really as gluten-free as you might think you are.  Those are very high.  Before you go to Refractory, the doctor should recommend the Fasano elimination diet.  That works for those with no response to a gluten-free diet.

 

 

Hello Kareng, 

Thank you again for the link. Like I said to Cyclinglady, I have never heard of this diet but I will definitely look into it. I know at this point my Gastro provider wanted me to stay Gluten Free for another 6 months, then retest my labs. But I will bring this up when I see him this month. 

But what is Refractory Celiac? From what I researched so far, its basically when your body fails to heal and you continue to suffer from villous atrophy even though you follow a strict gluten free diet. If this is the case, I really hope I do not have it. :o

Thank you again for your reply and thoughts. I will read this article as well. 

-CatAli 

 

 

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2 minutes ago, CatAli said:

Hello Kareng, 

Thank you again for the link. Like I said to Cyclinglady, I have never heard of this diet but I will definitely look into it. I know at this point my Gastro provider wanted me to stay Gluten Free for another 6 months, then retest my labs. But I will bring this up when I see him this month. 

But what is Refractory Celiac? From what I researched so far, its basically when your body fails to heal and you continue to suffer from villous atrophy even though you follow a strict gluten free diet. If this is the case, I really hope I do not have it. :o

Thank you again for your reply and thoughts. I will read this article as well. 

-CatAli 

 

 

But what the researchers found was that, most all "refractory" patients who went on the Fassano diet, healed. It would definitely  be worth a try.

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I agree with Karen.  She has offered some very sound advice.  There are  way too many celiacs being diagnosed with refractory or non-responsive celiac disease without trying to determine if hidden sources of gluten are being consumed.  Read the link and try the diet. 

http://www.mdpi.com/2072-6643/9/10/1129/pdf

This article does discuss the fact that follow-up blood testing is not perfect and that an endoscopy is the only way to know for sure.  Again, the blood tests are the only tools in the toolbox right now.  However, I would trial the “Fasano” diet (I did!) before doing a repeat endoscopy.  I would not even do the Fasano diet at all, especially if you are not experiencing any DH flares.  Celiacs who have DH can be super sensitive and the proof can be easily seen and felt on your skin.  No breakouts and you can be sure you are doing the gluten free diet correctly.  (I do not have DH, so someone with DH, back me up!) 

Refractory celiac disease is like my Hashimoto’s or AI gastritis.  There is no cure and no one really knows the trigger (unlike celiac disease where gluten is the trigger).  It is RARE.  

I am simply gluten free and low carb at this point.  I have considered an Autoimmune Diet (AIP), but it means no coffee for me!  My diet is already restrictive enough as I have celiac disease and diabetes, but I am still contemplating it.  Autoimmune issues tend to flare up and diminish.  I seem to be much better now.  

We have had members who suspected refractory, but it turns out they were getting gluten into their diet.  

 

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4 minutes ago, cyclinglady said:

 I would not even do the Fasano diet at all, especially if you are not experiencing any DH flares.  Celiacs who have DH can be super sensitive and the proof can be easily seen and felt on your skin.  No breakouts and you can be sure you are doing the gluten free diet correctly.  (I do not have DH, so someone with DH, back me up!) 

 

I am guessing the DH wasn't officially or correctly diagnosed.  If the antibody levels are that high, I would think that Dh would be present.  A lot of people, even doctors, just say that a rash is DH with Celiac.    

The thing that is concerning is how high the follow-up levels are!  Sometimes they can be slightly elevated from other causes, but these levels are still above what the test can measure.  It does make you wonder how high they were initially.  But one is going down... 

So, if it were me, before I had another endo and got put on prednisone for a long period of time, I would give the Fasano diet a trial. I would look very carefully at every thing I eat.  At what others in the house eat.  I have seen people who believe they are eating gluten-free but eat Rice Krispies or corn flakes which are not gluten-free.  Just as an example.  or share a toaster or find out that someone has been using their PB.

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CatAli,

1 hour ago, CatAli said:

I need to do some research on Chronic Autoimmune Gastritis.

Here is the link to the study on Chronic Gastritis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673514/

and a recent thread about electrolyte imbalances that can be tied too low stomach acid for too long associated with chronic gastritis.

I hope this is helpful.

***this is not medical advice but I found I had low stomach acid misdiagnosed/undiagnosed because at least in my case a heidelberg test aka gastric acid function test was never performed to test the function of my stomach.  Once I took betaineHCL my GI symptom's greatly improved.

this does not work for everybody but before (taking betaineHCL) you should get your doctor's to test first for your pH levels and then you will know if taking BetaineHCL can help you.

some people self test with betaineHCL capsules first but it might be risky if you don't know how to take them without some research on it first.

but the key for me was to bee sure to drink plenty of water.

Take at least a full 16 oz of water for every BetaineHCL couple capsules to activate the stomach acid.  this will also keep the capsule from lodging in the lining of the stomach possible causing things worse and help sufficiently dissolve the capsule itself.  Always do this with food to help you dilute the acid you have just taken with food naturally.

but water is key to driving the digestion process.

if done properly you will feel a warm sensation in your abdomen area.

again I hope this is helpful. . . but I would have your doctor "officially" test the strength of your stomach acid with a heidelberg test because low stomach acid is linked to chronic gastritis.

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,

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Is it possible that your lab's TTG-IGA test's ceiling (250) is low enough that it's making it hard to measure your progress? At our lab, the ceiling is 3,000; my kids were diagnosed around the same time as you with results over that ceiling (>3,000) and have registered results in the 300s and 200s (which would for you still show as "unknown number above 250") as they progress downward. They've made it to the double digits now, so their levels are going down faster than yours - so you may be getting some gluten in your diet or just healing more slowly - i.e., your levels are coming down, you just can't see it on that test yet.

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2 hours ago, Sienna2013 said:

Is it possible that your lab's TTG-IGA test's ceiling (250) is low enough that it's making it hard to measure your progress? At our lab, the ceiling is 3,000; my kids were diagnosed around the same time as you with results over that ceiling (>3,000) and have registered results in the 300s and 200s (which would for you still show as "unknown number above 250") as they progress downward. They've made it to the double digits now, so their levels are going down faster than yours - so you may be getting some gluten in your diet or just healing more slowly - i.e., your levels are coming down, you just can't see it on that test yet.

Good point!  ?

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21 hours ago, Sienna2013 said:

Is it possible that your lab's TTG-IGA test's ceiling (250) is low enough that it's making it hard to measure your progress? At our lab, the ceiling is 3,000; my kids were diagnosed around the same time as you with results over that ceiling (>3,000) and have registered results in the 300s and 200s (which would for you still show as "unknown number above 250") as they progress downward. They've made it to the double digits now, so their levels are going down faster than yours - so you may be getting some gluten in your diet or just healing more slowly - i.e., your levels are coming down, you just can't see it on that test yet.

This is what I thought myself.  It is a shame that labs do no give a definitive number , once the results go over the low threshold they usually give. Your tTg could have been 4,000, for all we know.  It could be coming down but you won't see that until it reaches 250 and lower.  The lab which tested me did the same thing.  They only went to 100 and my result showed as a bar graph and it extended out well past the 100 point but gave no numerical number.  For diagnosis purposes, anything as high as 100 is a no brainer for Celiac but for healing purposes, a solid number is the key to knowing how well you are really doing.  Most people do not have that high of a tTg but some of us do.

If your symptoms are going away or under control and you feel much better, I would not worry about it and wait to re-test.  You could have a nutritionist look over your diet to see if there are any slip-ups but that is up to you.  Hang in there......these things take a lot of time sometimes.

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The celiac antibody tests in the US are only approved by the FDA for diagnosis, not for monitoring recovery and comparing from one time point to another.  Diluting the sample and rerunning the test to get a number within reportable range would not be cost effective for a laboratory.

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Repeat antibody testing, for those who are serio-positive at diagnosis, is extremely useful as a tool for monitoring improvement. Many Celiac experts (MD's) have written books detailing which ones are important to use as another tool in monitoring recovery so I would take their word over the FDA.  It will not be 100% in all cases but with immune testing, that's pretty normal.  It's supposed to be used in conjunction with symptom resolution and the normalization of deficiencies, if they existed at diagnosis.  Not everyone is game to have invasive testing done again, unless warranted.  Most every Celiac doctor uses them as another tool after diagnosis and until they develop another, non-invasive test to monitor recovery, they do just fine for many.

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@CatAli

If you head over to the DH board, I think you'll see that most of the users there say they require a Fasano-ish diet to control their flares. This is the case for me personally.

I have also found that I have to be very careful when it comes to cosmetics/personal care products, even those that theoretically shouldn't end up near my mouth (gluten must be ingested to cause a celiac reaction). As a scientist who has done a lot of work in biohazard labs/clinical environments, I can assure you there's a reason why scientists/doctors wear gloves and surgical masks when handling stuff that like gluten, is only harmful if ingested... it's because people touch their mouths all the time without realizing it! Many mainstream, inexpensive brands are safe, so no point in risking it for the sake of vanity IMHO.

I'm not sure if you have access to the paper where the rules are described, but basically it involves cutting out all processed foods (even gluten-free substitutes), and allows you to eat only starchy vegetables (eg. potatoes), rice and beans (prepped from dry beans) in terms of complex carbs. No seasonings or spices except salt, unless you're buying them fresh (eg. fresh chili peppers, ginger, garlic, herbs). Fresh fruit/veggies, in-shell nuts, plain meat, eggs, and plain dairy (cheese, yoghurt, milk) are ok too. I'd argue that coffee is ok too, as long as you grind it from the whole bean, but strictly speaking... not on the list:blink:. Also... no eating anything you didn't make yourself, in case you weren't already doing that. 

Using the Fasano diet allowed me to figure out that the problem for me was most processed gluten-free substitute foods, such as breads, flours, pastas etc. To be clear, this isn't to say that these foods are unsafe for all... it's just that it's possible for many of these types of products to have legal/reasonable amounts of trace gluten that some people can't handle. Basically, the ultra-strict Fasano diet improved the rash a lot, and then I did trial/error reintroductions of various low-risk foods to see if they caused a relapse. Most things I was eating before were fine, but processed substitute foods were not, so they got the axe. Now I just make my own mostly.

Other people on this thread have given you good suggestions, but I wanted to make it clear that you are not alone in finding that the standard celiac GFD was not sufficient to fully get rid of your symptoms. I understand the frustration (and itchiness) you feel, especially when working with clinicians who don't get that there are shades of grey in applying the GFD. I hope you are able to bring your numbers down and get rid of the rash!

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14 hours ago, Gemini said:

Repeat antibody testing, for those who are serio-positive at diagnosis, is extremely useful as a tool for monitoring improvement. Many Celiac experts (MD's) have written books detailing which ones are important to use as another tool in monitoring recovery so I would take their word over the FDA

The FDA has not said the tests are not useful for monitoring (sorry about the double negative).  The test manufacturers have not submitted data requesting that their tests be approved by FDA for monitoring.  Since doctors already order the tests for monitoring there wouldn’t be much monetary advantage for the manufacturers to do a clinical trial proving that they are useful, just like there isn’t a monetary advantage to the laboratory to dilute and rerun a sample that is over range.

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