DH and ongoing high antibodies despite strict gluten-free diet.. feeling hopeless

[gffoodie]

Hi all -

I have been struggling lately due to persistent DH and high antibodies. I got diagnosed vis biopsy and blood work in May 2022 and since have been on a gluten-free diet. In June 2023, I got diagnosed with DH after my honeymoon (I did not have any rash for the first year of my celiac diagnosis) and ever since I feel like I react to gluten significantly worse than ever before due to my antibodies not going down. My only symptom is DH and I get a blister ~1 every 2ish weeks. I intermittently take dapsone as needed. Since October I have been the strictest I have ever been and have cut out all oats, most processed food especially if not certified gluten-free (I will eat yogurt, JIFF peanut butter, gluten-free spices, and some simple mills products) and I hardly ever go out to eat. I should also add that I am a registered dietitian and am very on top of my diet. I am not sure if there is anything I am missing. Me and my husband hope to start a family later this year and I am feeling scared that I wont be able to due to my high antibodies. I see a specialist at Columbia who does not think I have anything else co-occurring. Other than vitamin D, I do not have any deficiencies either. 

 

My lab work is as follows: 

At diagnosis:

Deamidated Gliadin Abs, IgA: 139

Deamidated Gliadin Abs, IgG: 91

t-Transglutaminase (tTG) IgA: >100

 

June 2023 at DH diagnosis: 

tissue transglutaminase Ab IgA: 67 

 

October 2023: 

(Deamidated)Ab (IgA): 79.2

Deamidated Gliadin Abs, IgG: 14.8 

tissue transglutaminase Ab IgA: >250

 

December 2023: 

(Deamidated)Ab (IgA): 62

Deamidated Gliadin Abs, IgG: 11.1

tissue transglutaminase Ab IgA: >250

 

Thanks so much in advance. 

[trents]

@gffoodie, welcome to the forum! Could you include the reference ranges for each test used by the lab or labs doing the analysis? There are not industry standards for these things so raw numbers without reference ranges are not very helpful. You will likely have to repost the numbers to do so as there is a very short time window to edit posts already made.

Edited January 9 by trents

[gffoodie]

6 minutes ago, trents said:

@gffoodie, welcome to the forum! Could you include the reference ranges for each test used by the lab or labs doing the analysis? There are not industry standards for these things so raw numbers without reference ranges are not very helpful. You will likely have to repost the numbers to do so as there is a very short time window to edit posts already made.

 

Thank you for the reminder - totally forgot to add the reference values. Here is the lab work with reference values. 

 

Deamidated Gliadin Abs, IgA: 139 (Negative 0 - 19; Weak Positive 20 - 30; Moderate to Strong Positive >30)

Deamidated Gliadin Abs, IgG: 91  (Negative 0 - 19; Weak Positive 20 - 30; Moderate to Strong Positive >30)

t-Transglutaminase (tTG) IgA: >100 (Negative 0 - 3; Weak Positive 4 - 10; Positive >10) 

 

June 2023 at DH diagnosis: 

tissue transglutaminase Ab IgA: 67 (positive >10, negative <4)

 

October 2023: 

(Deamidated)Ab (IgA): 79.2 (<15.0 Antibody not detected > or = 15.0 Antibody detected)

Deamidated Gliadin Abs, IgG: 14.8 (<15.0 Antibody not detected > or = 15.0 Antibody detected)

tissue transglutaminase Ab IgA: >250 (<15.0 Antibody not detected > or = 15.0 Antibody detected)

 

December 2023: 

(Deamidated)Ab (IgA): 62 (<15.0 Antibody not detected > or = 15.0 Antibody detected)

Deamidated Gliadin Abs, IgG: 11.1 (<15.0 Antibody not detected > or = 15.0 Antibody detected)

tissue transglutaminase Ab IgA: >250 (<15.0 Antibody not detected > or = 15.0 Antibody detected)

[trents]

Looks like all your antibody scores have been decreasing except the tTG-IGA and it has actually increased from the date of the original testing. Indeed, that is very odd given the fact that you seem to be diligent about eating gluten-free.

[Scott Adams]

Normally your tTg levels should be trending downward if your diet is 100% gluten-free. Do you eat outside your home, for example in restaurants? If so, this is a very common source of contamination.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[gffoodie]

2 minutes ago, Scott Adams said:

Normally your tTg levels should be trending downward if your diet is 100% gluten-free. Do you eat outside your home, for example in restaurants? If so, this is a very common source of contamination.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

Thank you - I have read through previously and it is very helpful! 

I do have a 100% gluten-free home and I have only eaten outside of my home ~4 times since October (2 of those times were at a 100% gluten-free restaurant.) Even prior to that I really tried to limit any outside exposure by bringing my own food or going to highly rated places on Find Me gluten-free app. 

[cristiana]

Hi gffoodie

It took me a long time for my numbers to go down to normal levels, it is so frustrating.   I wonder, are you taking any supplements or medication which could be a source?  

Cristiana

[shadycharacter]

There may gluten in things other than what you eat, but I don't know how much they affect antibody levels. Have you checked skin lotions and similar products? I think wheat is sometimes used as starch in textiles like sheets.

[Scott Adams]

51 minutes ago, gffoodie said:

Thank you - I have read through previously and it is very helpful! 

I do have a 100% gluten-free home and I have only eaten outside of my home ~4 times since October (2 of those times were at a 100% gluten-free restaurant.) Even prior to that I really tried to limit any outside exposure by bringing my own food or going to highly rated places on Find Me gluten-free app. 

Believe it or not there is no guarantee the restaurants are 100% gluten-free, even if the app says so. 

[Badfinger]

I suffered from DH on my elbows, knees back etc. I was prescribed Dapsone and it did very little to relieve it.

I started taking Fexofenadine HCL 180mg(Allegra) every morning… it started to immediately take the edge off and clear my symptoms in about a week.

It worked for me luckily because I was at my wits end… I never experienced itching like that in my life!!

[gffoodie]

1 hour ago, shadycharacter said:

There may gluten in things other than what you eat, but I don't know how much they affect antibody levels. Have you checked skin lotions and similar products? I think wheat is sometimes used as starch in textiles like sheets.

I am using gluten-free products on my lips but I have not looked into other household items, but I will!

44 minutes ago, Badfinger said:

I suffered from DH on my elbows, knees back etc. I was prescribed Dapsone and it did very little to relieve it.

I started taking Fexofenadine HCL 180mg(Allegra) every morning… it started to immediately take the edge off and clear my symptoms in about a week.

It worked for me luckily because I was at my wits end… I never experienced itching like that in my life!!

Thanks so much for sharing!! so glad you found relief - the itching is insane. I will further explore the Allegra for myself! 

[gffoodie]

1 hour ago, cristiana said:

Hi gffoodie

It took me a long time for my numbers to go down to normal levels, it is so frustrating.   I wonder, are you taking any supplements or medication which could be a source?  

Cristiana

Hi Cristiana! 

thanks for your comment! I am hoping with more time and consistency I will start to see progress in the right direction. I am taking Nature's Made vitamin D and Super B complex - the bottles say Gluten free.

[cristiana]

35 minutes ago, gffoodie said:

Hi Cristiana! 

thanks for your comment! I am hoping with more time and consistency I will start to see progress in the right direction. I am taking Nature's Made vitamin D and Super B complex - the bottles say Gluten free.

Well that sounds OK, I managed to take an iron supplement which did contain gluten so it does happen (a mix-up with the packaging of another similar but gluten free product). 

However, dining out is definitely something to stop for now.

[shadycharacter]

1 hour ago, gffoodie said:

I am using gluten-free products on my lips but I have not looked into other household items, but I will!

Another possibility is iodine which can make DH worse. Iodine is of course (as you know) essential and can't be avoided completely, but perhaps check if you get more than necessary. 

[RMJ]

Based on the normal ranges, it looks like the four sets of results were performed by three different labs, so different test manufacturers.  Numbers can’t be compared unless they are from the same manufacturer’s test because the units are not absolute (weight/volume) but set by each manufacturer.

Your numbers that can be evaluated have gone down between October and December, so that’s good!

I’m sure it is VERY frustrating to have numbers that high more than a year into the gluten free diet.  My DGP IgA antibodies took SIX years to get into the normal range, then popped back up out of range when I started using a well-known brand of gluten free flour. I switched to a certified gluten free flour and my levels are normal again.

I have a B.S. in Nutrition Science so I thought I knew what I was doing and started my gluten free diet by reading labels and avoiding gluten ingredients.  Antibody levels decreased but DGP-IgA still way above normal.  Then I only ate processed foods if labeled gluten free. DGP-IgA antibody levels lower but still not normal.  At four years gluten free I had an endoscopy and was still Marsh 3A.  Now for processed foods I eat certified gluten free, with a few exceptions from brands well-respected in the celiac community.

Have you looked at sources of gluten contamination besides food?  Wooden spoons, pots/pans with rough surface, shampoo if you have long hair that gets in your mouth, kissing husband if he has a beer without brushing his teeth, sharing keyboard at work with people who eat at their desks, etc.

Some people have good luck with the Fasano Gluten Contamination Elimination Diet. described in the linked paper. It didn’t help my levels and as a dietician it may not be much stricter than what you’re already eating, but you might find it interesting.

[Raquel2021]

8 hours ago, gffoodie said:

Hi all -

I have been struggling lately due to persistent DH and high antibodies. I got diagnosed vis biopsy and blood work in May 2022 and since have been on a gluten-free diet. In June 2023, I got diagnosed with DH after my honeymoon (I did not have any rash for the first year of my celiac diagnosis) and ever since I feel like I react to gluten significantly worse than ever before due to my antibodies not going down. My only symptom is DH and I get a blister ~1 every 2ish weeks. I intermittently take dapsone as needed. Since October I have been the strictest I have ever been and have cut out all oats, most processed food especially if not certified gluten-free (I will eat yogurt, JIFF peanut butter, gluten-free spices, and some simple mills products) and I hardly ever go out to eat. I should also add that I am a registered dietitian and am very on top of my diet. I am not sure if there is anything I am missing. Me and my husband hope to start a family later this year and I am feeling scared that I wont be able to due to my high antibodies. I see a specialist at Columbia who does not think I have anything else co-occurring. Other than vitamin D, I do not have any deficiencies either. 

 

My lab work is as follows: 

At diagnosis:

Deamidated Gliadin Abs, IgA: 139

Deamidated Gliadin Abs, IgG: 91

t-Transglutaminase (tTG) IgA: >100

 

June 2023 at DH diagnosis: 

tissue transglutaminase Ab IgA: 67 

 

October 2023: 

(Deamidated)Ab (IgA): 79.2

Deamidated Gliadin Abs, IgG: 14.8 

tissue transglutaminase Ab IgA: >250

 

December 2023: 

(Deamidated)Ab (IgA): 62

Deamidated Gliadin Abs, IgG: 11.1

tissue transglutaminase Ab IgA: >250

 

Thanks so much in advance. 

I am sorry to hear you are going through this. You are not alone. I was diagnosed with celiac 3 years ago and last year developed a rash that looked like DH after going to a restaurant and getting sick. I was also dealing with numbness/tingling on the right side of my face and limbs. It turns out it was iodine in my diet causing these issues.  I run out of iodized salt for a while and used non-iodized sea salt. I also had to eliminate eggs and dairy as those products would cause the paresthesia on my face. The salt was the last thing I eliminated.  It turns out the paresthesia went away by 99 percent which is pretty good. Apparently iodine can make DH worse. Eggs and dairy are rich in iodine. Following a paleo style or AIp diet can help. Also don't trust spices. I react to paprika, cinnamon, cumin. Spices might have undeclared gluten. I hope I can have these again one day but for now I had to take them out. My diet is fruits, vegetables, meats and seafood.  There is iodine in seafood but I don't react to that. I also eat a bit of rice and beans and nuts. here and there. But this is the only way I can manage my symptoms. 

Also look at spices and replacing kitchenware I know I had to do it to stop having reactions. I also don't eat out much.

[RMJ]

5 minutes ago, Raquel2021 said:

I am sorry to hear you are going through this. You are not alone. I was diagnosed with celiac 3 years ago and last year developed a rash that looked like DH after going to a restaurant and getting sick. I was also dealing with numbness/tingling on the right side of my face and limbs. It turns out it was iodine in my diet causing these issues.  I run out of iodized salt for a while and used non-iodized sea salt. I also had to eliminate eggs and dairy as those products would cause the paresthesia on my face. The salt was the last thing I eliminated.  It turns out the paresthesia went away by 99 percent which is pretty good. Apparently iodine can make DH worse. Eggs and dairy are rich in iodine. Following a paleo style or AIp diet can help. Also don't trust spices. I react to paprika, cinnamon, cumin. Spices might have undeclared gluten. I hope I can have these again one day but for now I had to take them out. My diet is fruits, vegetables, meats and seafood.  There is iodine in seafood but I don't react to that. I also eat a bit of rice and beans and nuts. here and there. But this is the only way I can manage my symptoms. 

Also look at spices and replacing kitchenware I know I had to do it to stop having reactions. I also don't eat out much.

Spicely makes certified gluten free spices!

[gffoodie]

1 hour ago, RMJ said:

Based on the normal ranges, it looks like the four sets of results were performed by three different labs, so different test manufacturers.  Numbers can’t be compared unless they are from the same manufacturer’s test because the units are not absolute (weight/volume) but set by each manufacturer.

Your numbers that can be evaluated have gone down between October and December, so that’s good!

I’m sure it is VERY frustrating to have numbers that high more than a year into the gluten free diet.  My DGP IgA antibodies took SIX years to get into the normal range, then popped back up out of range when I started using a well-known brand of gluten free flour. I switched to a certified gluten free flour and my levels are normal again.

I have a B.S. in Nutrition Science so I thought I knew what I was doing and started my gluten free diet by reading labels and avoiding gluten ingredients.  Antibody levels decreased but DGP-IgA still way above normal.  Then I only ate processed foods if labeled gluten free. DGP-IgA antibody levels lower but still not normal.  At four years gluten free I had an endoscopy and was still Marsh 3A.  Now for processed foods I eat certified gluten free, with a few exceptions from brands well-respected in the celiac community.

Have you looked at sources of gluten contamination besides food?  Wooden spoons, pots/pans with rough surface, shampoo if you have long hair that gets in your mouth, kissing husband if he has a beer without brushing his teeth, sharing keyboard at work with people who eat at their desks, etc.

Some people have good luck with the Fasano Gluten Contamination Elimination Diet. described in the linked paper. It didn’t help my levels and as a dietician it may not be much stricter than what you’re already eating, but you might find it interesting.

thanks so much for your advice and support! your right it is so frustrating! regarding my numbers - my first two sets were at my PCP and previous GI who I did not like... the most recent two are from my new celiac GI and thankfully all future lab work will be with him which makes it easier to see trends and compare. 

Everything in my kitchen is brand new (thanks to my bridal shower last year lol) and I do not have Gluten in the kitchen. I work from home and my my husband is gluten-free at home but does at gluten at work - I can definitely be more careful about not mixing up our drinking cups/ kissing etc. 

I have actually been researching a lot about the Fasano diet protocol and plan to bring it up with my dr at my Feb appointment. I have been hesitant to fully commit to it due to still trying to keep some enjoyment and satisfaction with food , however it does seem like it could be helpful for me. 

[gffoodie]

33 minutes ago, Raquel2021 said:

I am sorry to hear you are going through this. You are not alone. I was diagnosed with celiac 3 years ago and last year developed a rash that looked like DH after going to a restaurant and getting sick. I was also dealing with numbness/tingling on the right side of my face and limbs. It turns out it was iodine in my diet causing these issues.  I run out of iodized salt for a while and used non-iodized sea salt. I also had to eliminate eggs and dairy as those products would cause the paresthesia on my face. The salt was the last thing I eliminated.  It turns out the paresthesia went away by 99 percent which is pretty good. Apparently iodine can make DH worse. Eggs and dairy are rich in iodine. Following a paleo style or AIp diet can help. Also don't trust spices. I react to paprika, cinnamon, cumin. Spices might have undeclared gluten. I hope I can have these again one day but for now I had to take them out. My diet is fruits, vegetables, meats and seafood.  There is iodine in seafood but I don't react to that. I also eat a bit of rice and beans and nuts. here and there. But this is the only way I can manage my symptoms. 

Also look at spices and replacing kitchenware I know I had to do it to stop having reactions. I also don't eat out much.

thank you for your support - and I am sorry for the journey you had to go through as well! 

I do eat eggs daily to get in protein at breakfast - I find that without dairy and oats I have a hard time with food in the morning. I also typically put some cinnamon in my coffee and use paprika, salt, pepper and garlic to cook - I will take a closer look into and try to at least buy certified gluten-free spices or cut them out completely for a while ( mine say Gluten free but are not certified). 

[Raquel2021]

11 minutes ago, gffoodie said:

thank you for your support - and I am sorry for the journey you had to go through as well! 

I do eat eggs daily to get in protein at breakfast - I find that without dairy and oats I have a hard time with food in the morning. I also typically put some cinnamon in my coffee and use paprika, salt, pepper and garlic to cook - I will take a closer look into and try to at least buy certified gluten-free spices or cut them out completely for a while ( mine say Gluten free but are not certified). 

I completely undertand.  It took me months to realize it was the eggs and dairy causing my paresthesia but eliminated them out of desperation. Lastly my endocrinologist told me Hashimotos patients do better with no iodized salt but I didn't listen as I know iodine is needed but as I said that was what made the difference.  Basically I am on a low iodine diet as iodine is in everything.  Just eggs, dairy and iodized salt are big on iodine. 

Do your own research.  Iodine affects patients with DH. 

[gffoodie]

4 minutes ago, Raquel2021 said:

I completely undertand.  It took me months to realize it was the eggs and dairy causing my paresthesia but eliminated them out of desperation. Lastly my endocrinologist told me Hashimotos patients do better with no iodized salt but I didn't listen as I know iodine is needed but as I said that was what made the difference.  Basically I am on a low iodine diet as iodine is in everything.  Just eggs, dairy and iodized salt are big on iodine. 

I do use non-iodized salt but I am curious about the sources in the eggs and daily that I eat pretty daily. I feel like it is so much trial and error! 

[Raquel2021]

19 minutes ago, gffoodie said:

I do use non-iodized salt but I am curious about the sources in the eggs and daily that I eat pretty daily. I feel like it is so much trial and error! 

Just search foods high in iodine.  Also seaweed is a no no. Kelp etc

[Russ H]

1 hour ago, Raquel2021 said:

I completely undertand.  It took me months to realize it was the eggs and dairy causing my paresthesia but eliminated them out of desperation. Lastly my endocrinologist told me Hashimotos patients do better with no iodized salt but I didn't listen as I know iodine is needed but as I said that was what made the difference.  Basically I am on a low iodine diet as iodine is in everything.  Just eggs, dairy and iodized salt are big on iodine. 

Do your own research.  Iodine affects patients with DH. 

Eggs and oats won't raise tTG2 antibodies. Are the oats certified gluten free?

[gffoodie]

13 minutes ago, Russ H said:

Eggs and oats won't raise tTG2 antibodies. Are the oats certified gluten free?

The iodine would more effect my DH symptoms vs my antibodies and lab results. The oats I cut out in attempt to try to lower my antibodies due to high risk of cross contamination. Even certified gluten-free oats - my doctor suggested it as more of an elimination diet to see (especially because we are both having a hard time understanding what could be contributing to my high antibody levels when my diet is so strict) and eventually reintroducing them and noting if there is any reaction. 

[trents]

Could this be a legitimate case of refractory celiac disease?

gffoodie, I understand you to say that you have never had any celiac symptoms apart from DH. Is this correct? Have you ever had an endoscopy/biopsy?