Lab Help?

[Andi-is-sleepy15]

Hi all,

I’m new here 🙂 I have been on an over a year mission to figure out what is wrong with me. I can tell you it isn’t lupus or any of the varying hormonal autoimmune issues. The endocrinologist decided to throw in a celiac panel because I have lost 12lbs in the last month, my skin is heavily affected, and I have chronic bowel issues. I also have a long history of fainting, seizures, and terrible kidney infections. I now know what DH is after researching and am convinced that is my skin problem. In any case, the iga itself came back very elevated but the ttg-iga showed negative. Is this a thing? I was very encouraged that I had found an answer as the endocrinologist said “it’s celiac disease and I am referring you to gastro to figure out what to do about it” but with a negative ttg I am less hopeful now. Any insight here? Can I still be potentially hopeful to have found the diagnosis or does the negative ttg mean no?

[trents]

Which IGA do you speak of that came back "very elevated"? "IGA" is a category of antibodies, one of which is the tTG_IGA. But there are others. Are you referring to total IGA being elevated? Can you reproduce your total report in another post along with reference ranges? It is not uncommon to get a negative tTG-IGA and still have celiac disease. But that is why it is a good idea to have a complete celiac panel ordered so that other IGA and IGG antibody levels can be looked at. The tTG-IGA misses 20% of celiacs of white European decent and 80% of people of black African decent.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited September 11, 2022 by trents

[Andi-is-sleepy15]

11 minutes ago, trents said:

Which IGA do you speak of that came back "very elevated"? "IGA" is a category of antibodies, one of which is the tTG_IGA. But there are others. Are you referring to total IGA being elevated? Can you reproduce your total report in another post along with reference ranges? It is not uncommon to get a negative tTG-IGA and still have celiac disease. But that is why it is a good idea to have a complete celiac panel ordered so that other IGA and IGG antibody levels can be looked at. The tTG-IGA misses 20% of celiacs of white European decent and 80% of people of black African decent.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Hi Trent!

I will do my best here. My total IGA is the elevated at 475 with a cutoff of 400. Ttg-iga is <1.0 with >15.00 as cutoff. Gliadin IGG <1.0. I have elevated platelets if that is relevant at all. All other CBC appears normal, but I can assure you the feelings are all present and the skin is an undeniably visible symptom I’ve been worried about for months. My brother has lupus and my mother RA so with all of these things going on for years we have suspected several culprits and no one has ever mentioned this one, however it seems incredibly consistent. Explains symptoms that other theories have not (I’ve read about night sweats on here. Mine have come and gone consistently seemingly for no reason, but are absolutely drenching). So when he said this, after years of searching for a solid lead, I was encouraged. I do have a gastro appt 10/13 but looking for any level of education on this since I hadn’t ever suspected this one.

This website is by far the most all encompassing I have found. Kudos to all involved in that.

[trents]

DH is definitive for celiac disease. There is no other known cause for DH. My understanding is that DH has a distinctive appearance with little blisters. It would be a good idea to get the skin outbreak biopsied during an active outbreak. A small percentage of celiacs with DH will have negative SB lining biopsies and negative serum antibody tests. In other words, the immune system reaction will be manifested only epidermally. But DH can be a very unpleasant and stubborn affliction. There is something called Dapasone that seems to be effective in keeping it in check, however.

Edited September 12, 2022 by trents

[Andi-is-sleepy15]

1 hour ago, trents said:

DH is definitive for celiac disease. There is no other known cause for DH. My understanding is that DH has a distinctive appearance with little blisters. It would be a good idea to get the skin outbreak biopsied during an active outbreak. A small percentage of celiacs with DH will have negative SB lining biopsies and negative serum antibody tests. In other words, the immune system reaction will be manifested only epidermally. But DH can be a very unpleasant and stubborn affliction. There is something called Dapasone that seems to be effective in keeping it in check, however.

Thank you for all of this 😊 I’m kind of baffled that no doc tested it earlier (the skin) and I’m sort of shaming myself for not finding it. It won’t be long until it flares I am sure so that’s handy. 
 

We shall see where my journey goes! Thanks again!

[trents]

By the way, I hope you did not start eating gluten-free before testing was done. That will invalidate the testing, whether the serum antibody testing or the endoscopy with biopsy. Don't start withdrawing gluten from your diet until all testing is complete. The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks prior to antibody testing and for two weeks prior to a biopsy. Many doctors forget to share this with their patients being screened for celaic disease or may not even know enough to tell them. The ignorance of gluten-related disorders in the medical community at large is surprising.

Edited September 12, 2022 by trents

[Rogol72]

A skin biopsy by a Dermatologist for DH would be definitive if that's possible before your gastro appointment while the rash is active. I was treated for Eczema with topical steroid cream which didn't help that much before a skin biopsy for DH came back positive. I had a subsequent negative SB biopsy for celiac disease. 

[Andi-is-sleepy15]

2 hours ago, Rogol72 said:

A skin biopsy by a Dermatologist for DH would be definitive if that's possible before your gastro appointment while the rash is active. I was treated for Eczema with topical steroid cream which didn't help that much before a skin biopsy for DH came back positive. I had a subsequent negative SB biopsy for celiac disease. 

Yea I think this will be an easy way to confirm or not when it pops up. Shouldn’t be long I haven’t had more than a week or 2 of clear skin.

[Andi-is-sleepy15]

8 hours ago, trents said:

By the way, I hope you did not start eating gluten-free before testing was done. That will invalidate the testing, whether the serum antibody testing or the endoscopy with biopsy. Don't start withdrawing gluten from your diet until all testing is complete. The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks prior to antibody testing and for two weeks prior to a biopsy. Many doctors forget to share this with their patients being screened for celaic disease or may not even know enough to tell them. The ignorance of gluten-related disorders in the medical community at large is surprising.

I appreciate that and have now read that. Previous to this being ran and said to me I certainly wasn’t paying attention. However, I am somewhat nervous about that as my appetite has been so poor I wouldn’t be surprised if I wasn’t hitting that level just based on lack of global intake. 

[trents]

There is also a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but there currently is no way to test for it. Celiac disease must first be ruled out. And NCGS is 10x more common than celiac disease. Some experts feel it can be a precursor to celiac disease.

[Andi-is-sleepy15]

2 hours ago, trents said:

There is also a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but there currently is no way to test for it. Celiac disease must first be ruled out. And NCGS is 10x more common than celiac disease. Some experts feel it can be a precursor to celiac disease.

Also helpful. I am desperate to know at this point. Thank you!

[GF-Cate]

 

FYI before having a skin biopsy...

"It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits."

Celiac Disease Foundation