Need Advice! Three Years Gluten Free and Numbers Still Elevated

[Integrous]

I would love some advice from celiac-knowledgeable folks.  I have been vigilant in my efforts to be gluten free since my diagnosis with celiac disease 3 years ago.  Although the results of my blood work have improved over time, I cannot get some of the numbers within acceptable range:

 

 

Values in bold typeface are out of acceptable range.

 

 

11/29/13

LabCorp

3/14/14

LabCorp

7/16/14

LabCorp

11/5/14

LabCorp

6/16/16

LabCorp

8/4/16

LabCorp

Endomysial Antibody IgA

Positive

Positive

Positive

Positive

Positive

Positive

tTg IgA

<4  negative

4-10 = weak positive

>10 = strong positive

>100

>100

86

30

13

14

Deamidated Gliadin IgA

0-19 = negative

20-30 = weak positive

>30 = strong positive

 

 

 

 

86

59

23

23

Deamidated Gliadin IgG

0-19 = negative

20-30 = weak positive

>30 = strong positive

 

 

 

 

38

25

6

7

My doctor, who heads the largest celiac program in Philadelphia, told me he was "stumped" and could only theorize that I’m ingesting trace amounts of gluten from some unknown source(s).  Even though that seems impossible to me since I'm fanatical about food, drink, cosmetics, dinnerware, etc., for 3 months I followed an “altered diet” where I avoided most processed foods and any foods that are at high risk for contamination (e.g, gluten-free breads, gluten-free beer, gluten-free pizza, gluten-free pretzels, gluten-free baked goods).  After those 3 months, my blood was tested again and showed:

 

 

12/12/16

LabCorp

Endomysial Antibody IgA

Positive

tTg IgA

<4 = negative

4-10 = weak positive

>10 = strong positive

8

Deamidated Gliadin IgA

0-19 = negative

20-30 = weak positive

>30 = strong positive

13

Deamidated Gliadin IgG

0-19 = negative

20-30 = weak positive

>30 = strong positive

5

So, there was some small improvement, but my numbers are still not where they need to be and I don’t know whether that small improvement is attributable to the “altered diet.”  And given that my doctor is admittedly stumped, I don’t expect he’ll be of much help, and his dietitian is useless.

My question is, what should I do next?  Remain on the “altered” gluten-free diet to see if my numbers continue to fall.  Go back to my “regular” gluten-free diet to see if my numbers rise?  Try a true paleo diet (which I dread)?  Any thoughts would be appreciated... elevated numbers after 3 years is a long time.

[RMJ]

I can't help, but I can sympathize.  I hope you get some advice!  I've been trying to be gluten free for four years.  My antibody levels have come way down but my DGP IgA is still high and my TTg IgA is still borderline positive.  Each time I try a stricter diet they come down a little more.  I'm now eating mainly whole foods plus some certified gluten free.  I had a biopsy last summer (along with my routine every 10 year colonoscopy) and I have Marsh 3A villi damage.  My GI doesn't have any advice.  I went to a dietician and we went over every ingredient in every food I eat plus toothpaste and mouthwash.  I don't have obvious symptoms so I can't tell that way where gluten might be hiding.  My husband is not gluten free but he prepares his food with gluten in a separate part of the kitchen and we have separate plates and utensils (no dishwasher).  If my levels are still up at my next test I may try 100% whole foods that can't be contaminated.  I dislike having to cut more and more out of my diet when I don't know where the problem really is.

[tessa25]

Looks to me like your altered diet is working great! Stick with it. You're so close. I'm over 50 and my numbers only go down on a mostly liquid gluten free diet. I have several months more to go before I can be on a regular gluten free diet.

 

 

[jerrycho]

I am not sure but it does look like u are on the right track. At least those numbers are not increasing? 

[cyclinglady]

It can take a LONG time for antibodies to come down.  According to the GI Association up to five years!   Some 30% of celiac disease adults do not heal.  Why?  Hidden sources of gluten/cross contamination researchers think.

Source for the five year statement:

Open Original Shared Link

 I think you need to wait and be patient.   If I were you, I would focus on the restrictive diet.  It may (nothing in life is concrete),  get you the results you want much faster.  I went gluten-free and felt pretty good after the first year, but when i got my diabetes diagnosis, i went on a low carb, high fat diet to keep my meter happy.  Amazingly, i finally felt really good!  So, i am still on this diet for almost three years.  It is doable.  I do not miss junk food.  Takes like  three weeks to get over cravings.  I do cheat (never gluten-free) during the holidays.  Sugar/carbs are so addictive!  

I ate out in Arizona over the Thanksgiving at four, yes, FOUR, 100% gluten-free restaurants.  Guess what?  My body does not like all that bread, cake and cookies!  I did not get glutend, but it was basically junk food!  Even my teen asked for veggies on the long drive home.  I do best on a whole foods diet.  

Remember that the researchers and government deemed gluten free at less than 20 ppm, but some folks react to even the tiniest amounts.  So, just because it is gluten-free, may not mean that it is safe for you as an individual.  

[squirmingitch]

Integrous and RMJ,

You guys may benefit form the Fasano Gluten Cross Contamination Elimination Diet:

Open Original Shared Link

I have been on this for about 7 weeks now & it has made a huge difference for me. I thought it would be hell eating this way but it hasn't. I haven't felt deprived in the least.

[cyclinglady]

13 minutes ago, squirmingitch said:

Integrous and RMJ,

You guys may benefit form the Fasano Gluten Cross Contamination Elimination Diet:

Open Original Shared Link

I have been on this for about 7 weeks now & it has made a huge difference for me. I thought it would be hell eating this way but it hasn't. I haven't felt deprived in the least.

Perfect!  Thanks!  So glad to hear that it is working for you!  

[RMJ]

30 minutes ago, squirmingitch said:

Integrous and RMJ,

You guys may benefit form the Fasano Gluten Cross Contamination Elimination Diet:

Open Original Shared Link

I have been on this for about 7 weeks now & it has made a huge difference for me. I thought it would be hell eating this way but it hasn't. I haven't felt deprived in the least.

About 95% of my diet fits that, with a little certified gluten free (not junk food).  If my antibodies aren't normal next year I'll go for 100%.  Although I don't have symptoms, I did just feel better eating mostly that way.  I was surprised that my dietician, who specializes in GI issues, had not heard of it.  

[Integrous]

On 12/16/2016 at 6:21 PM, RMJ said:

I can't help, but I can sympathize.  I hope you get some advice!  I've been trying to be gluten free for four years.  My antibody levels have come way down but my DGP IgA is still high and my TTg IgA is still borderline positive.  Each time I try a stricter diet they come down a little more.  I'm now eating mainly whole foods plus some certified gluten free.  I had a biopsy last summer (along with my routine every 10 year colonoscopy) and I have Marsh 3A villi damage.  My GI doesn't have any advice.  I went to a dietician and we went over every ingredient in every food I eat plus toothpaste and mouthwash.  I don't have obvious symptoms so I can't tell that way where gluten might be hiding.  My husband is not gluten free but he prepares his food with gluten in a separate part of the kitchen and we have separate plates and utensils (no dishwasher).  If my levels are still up at my next test I may try 100% whole foods that can't be contaminated.  I dislike having to cut more and more out of my diet when I don't know where the problem really is.

Thanks for sharing.  My villi have improved dramatically, but I still have bad neuro symptoms that have damaged my family life & career, and nothing I do seems to fix the problem.  And not many people understand.  Sending good vibes your way.  

[Integrous]

On 12/17/2016 at 0:42 PM, cyclinglady said:

It can take a LONG time for antibodies to come down.  According to the GI Association up to five years!   Some 30% of celiac disease adults do not heal.  Why?  Hidden sources of gluten/cross contamination researchers think.

Source for the five year statement:

Open Original Shared Link

 I think you need to wait and be patient.   If I were you, I would focus on the restrictive diet.  It may (nothing in life is concrete),  get you the results you want much faster.  I went gluten-free and felt pretty good after the first year, but when i got my diabetes diagnosis, i went on a low carb, high fat diet to keep my meter happy.  Amazingly, i finally felt really good!  So, i am still on this diet for almost three years.  It is doable.  I do not miss junk food.  Takes like  three weeks to get over cravings.  I do cheat (never gluten-free) during the holidays.  Sugar/carbs are so addictive!  

I ate out in Arizona over the Thanksgiving at four, yes, FOUR, 100% gluten-free restaurants.  Guess what?  My body does not like all that bread, cake and cookies!  I did not get glutend, but it was basically junk food!  Even my teen asked for veggies on the long drive home.  I do best on a whole foods diet.  

Remember that the researchers and government deemed gluten free at less than 20 ppm, but some folks react to even the tiniest amounts.  So, just because it is gluten-free, may not mean that it is safe for you as an individual.  

I respect your discipline and am grateful for the information & study (which I will print & read tonight).  Wishing you continued good health.  

[ling27]

On 12/16/2016 at 5:56 PM, Integrous said:

I would love some advice from celiac-knowledgeable folks.  I have been vigilant in my efforts to be gluten free since my diagnosis with celiac disease 3 years ago.  Although the results of my blood work have improved over time, I cannot get some of the numbers within acceptable range:

 

 

Values in bold typeface are out of acceptable range.

 

 

11/29/13

LabCorp

3/14/14

LabCorp

7/16/14

LabCorp

11/5/14

LabCorp

6/16/16

LabCorp

8/4/16

LabCorp

Endomysial Antibody IgA

Positive

Positive

Positive

Positive

Positive

Positive

tTg IgA

<4  negative

4-10 = weak positive

>10 = strong positive

>100

>100

86

30

13

14

Deamidated Gliadin IgA

0-19 = negative

20-30 = weak positive

>30 = strong positive

 

 

 

 

86

59

23

23

Deamidated Gliadin IgG

0-19 = negative

20-30 = weak positive

>30 = strong positive

 

 

 

 

38

25

6

7

My doctor, who heads the largest celiac program in Philadelphia, told me he was "stumped" and could only theorize that I’m ingesting trace amounts of gluten from some unknown source(s).  Even though that seems impossible to me since I'm fanatical about food, drink, cosmetics, dinnerware, etc., for 3 months I followed an “altered diet” where I avoided most processed foods and any foods that are at high risk for contamination (e.g, gluten-free breads, gluten-free beer, gluten-free pizza, gluten-free pretzels, gluten-free baked goods).  After those 3 months, my blood was tested again and showed:

 

 

12/12/16

LabCorp

Endomysial Antibody IgA

Positive

tTg IgA

<4 = negative

4-10 = weak positive

>10 = strong positive

8

Deamidated Gliadin IgA

0-19 = negative

20-30 = weak positive

>30 = strong positive

13

Deamidated Gliadin IgG

0-19 = negative

20-30 = weak positive

>30 = strong positive

5

So, there was some small improvement, but my numbers are still not where they need to be and I don’t know whether that small improvement is attributable to the “altered diet.”  And given that my doctor is admittedly stumped, I don’t expect he’ll be of much help, and his dietitian is useless.

My question is, what should I do next?  Remain on the “altered” gluten-free diet to see if my numbers continue to fall.  Go back to my “regular” gluten-free diet to see if my numbers rise?  Try a true paleo diet (which I dread)?  Any thoughts would be appreciated... elevated numbers after 3 years is a long time.

I would suggest taking a step back and think..... How do I feel now compared to 3 years ago and don't worry about the numbers.