Pushing for celiac testing but not sure if I'm right.

[kalest]

Hello!

I'll try to be quick! I have a lot of symptoms of 'silent celiac' but I'm doubting myself and whether I should push for testing.

In 2016 I starter to get INCREDIBLY itchy rashes on my arms, then it moved to hips, inside the thighs and more. Derm 1st said granuloma annulare, then contact dermatitis, then eczema. No biopsy was done on any of them. 

2016 is also the first time I noticed that my blood work said I had low hemoglobin (109 ug/l) and ferritin (22 ug/l) rheumatologist said I am anemic from being a woman.

In 2020 I was diagnosed with psoriatic arthritis. (And psoriasis when I was a kid)

I get random welts (not the rash stated above) that look like hives, can't lose weight despite going to the gym 4x a week, tingling in my hands and feet (but I chalk it up to the wrong position) fatigued (from anemia i assume) 

I haven't had any GI symptoms really, but I can't go on.. the joint pain, can't lose weight and rashes are really doing me in. 

I saw a video saying anemia and rashes are common in celiac and it clicked for me.. thinking this must be it.. since no one can help me (plus they didn't even biopsy the rash so it could be not eczema at all) I'm really doubting and unsure whether I'm just over reacting..

If you had these symptoms.. would you get tested?

Thanks in advance. Much appreciated.

[trents]

Welcome to the forum, kalest!

You could be a "silent" celiac, i.e., being a celiac without GI symptoms. The lack of GI symptoms will make many doctors skeptical since most aren't aware that this is possible. The tangential medical issues you describe certainly can be caused by celiac disease. There is also the possibility of NCGS (Non Celiac Gluten Sensitivity).

Do your rashes have bumps with little blisters in the center? If you are think of Dermatitis Herpetiformis (DH) then this is the defining characteristic of this expression of celiac disease and celiac disease is the only known cause for DH.

If you will be getting tested for celiac disease, don't experiment with the gluten free diet beforehand or you will invalidate the testing.

For about $100 U.S. you can purchase a home test for Celiac Disease from companies like Imaware and it is actually a more complete test than what most doctors will order. By that, I mean most doctors will order only one celiac antibody test (the tTG-IGA) when pursuing a diagnosis. The Imaware home test includes additional antibody tests.

[kalest]

  On 6/28/2023 at 12:16 AM, trents said:

Welcome to the forum, kalest!

Do your rashes have bumps with little blisters in the center? If you are think of Dermatitis Herpetiformis (DH) then this is the defining characteristic of this expression of celiac disease and celiac disease is the only known cause for DH.

For about $100 U.S. you can purchase a home test for Celiac Disease from companies like Imaware and it is actually a more complete test than what most doctors will order. By that, I mean most doctors will order only one celiac antibody test (the tTG-IGA) when pursuing a diagnosis. The Imaware home test includes additional antibody tests.

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Thanks for the reply!

I'm not sure about the rash - I didn't notice any blisters but they do bleed from the centre. It is symmetrical and incredibly itchy where I wake myself up scratching in the middle of the night .

The thing is, I did keto in 2017 and I definitely noticed all of my issues went away at that point, so I really suspect it's entirely food related. Whether gluten or not, we will see.

Unfortunately imaware doesn't have the celiac test available but I have found a place in Canada where they can send me to tTG-IGA/IGA test. I'm hoping with these answers I can push further with my doctor for a full panel (or not if it's negative)

 

 

 

[trents]

  On 6/28/2023 at 6:07 PM, kalest said:

Thanks for the reply!

I'm not sure about the rash - I didn't notice any blisters but they do bleed from the centre. It is symmetrical and incredibly itchy where I wake myself up scratching in the middle of the night .

The thing is, I did keto in 2017 and I definitely noticed all of my issues went away at that point, so I really suspect it's entirely food related. Whether gluten or not, we will see.

Unfortunately imaware doesn't have the celiac test available but I have found a place in Canada where they can send me to tTG-IGA/IGA test. I'm hoping with these answers I can push further with my doctor for a full panel (or not if it's negative)

 

 

 

Expand Quote  

See if you can find a home test kit that offers more than just the tTG-IGA test. Imaware must have discontinued their home test kit product for celiac disease. I couldn't find it either when I googled. All reviews of the product were a few years old.

[Nick Cheruka]

  On 6/27/2023 at 11:36 PM, kalest said:

Hello!

I'll try to be quick! I have a lot of symptoms of 'silent celiac' but I'm doubting myself and whether I should push for testing.

In 2016 I starter to get INCREDIBLY itchy rashes on my arms, then it moved to hips, inside the thighs and more. Derm 1st said granuloma annulare, then contact dermatitis, then eczema. No biopsy was done on any of them. 

2016 is also the first time I noticed that my blood work said I had low hemoglobin (109 ug/l) and ferritin (22 ug/l) rheumatologist said I am anemic from being a woman.

In 2020 I was diagnosed with psoriatic arthritis. (And psoriasis when I was a kid)

I get random welts (not the rash stated above) that look like hives, can't lose weight despite going to the gym 4x a week, tingling in my hands and feet (but I chalk it up to the wrong position) fatigued (from anemia i assume) 

I haven't had any GI symptoms really, but I can't go on.. the joint pain, can't lose weight and rashes are really doing me in. 

I saw a video saying anemia and rashes are common in celiac and it clicked for me.. thinking this must be it.. since no one can help me (plus they didn't even biopsy the rash so it could be not eczema at all) I'm really doubting and unsure whether I'm just over reacting..

If you had these symptoms.. would you get tested?

Thanks in advance. Much appreciated.

Expand Quote  

 

  On 6/28/2023 at 8:58 PM, trents said:

See if you can find a home test kit that offers more than just the tTG-IGA test. Imaware must have discontinued their home test kit product for celiac disease. I couldn't find it either when I googled. All reviews of the product were a few years old.

Expand Quote  

Hi, I wish I could help! The skin rashes could be a number of things that may or may not be related to celiacs! The skin rash of a Celiac is called Dermatitis Herpetiformis or DH for short which is caused by the ingestion of gluten! I would recommend the skin biopsy with a dermatologist to try and determine the cause of the rash, the question on Celiacs testing in my opinion the Endoscopy with Biopsy is the only way to confirm Celiacs and thats only while still ingesting gluten! If you have eliminated gluten for a while the test may not show villi atrophy aka intestinal damage from gluten proteins! Talk to a Celiac GI Dr about bloodwork and an Endoscopy with biopsy to confirm Celiacs! Good Luck☘️

[kalest]

  On 8/1/2023 at 3:59 PM, Nick Cheruka said:

 

Hi, I wish I could help! The skin rashes could be a number of things that may or may not be related to celiacs! The skin rash of a Celiac is called Dermatitis Herpetiformis or DH for short which is caused by the ingestion of gluten! I would recommend the skin biopsy with a dermatologist to try and determine the cause of the rash, the question on Celiacs testing in my opinion the Endoscopy with Biopsy is the only way to confirm Celiacs and thats only while still ingesting gluten! If you have eliminated gluten for a while the test may not show villi atrophy aka intestinal damage from gluten proteins! Talk to a Celiac GI Dr about bloodwork and an Endoscopy with biopsy to confirm Celiacs! Good Luck☘️

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Thank you Nick!

I did end up getting the biopsy and it was negative. After the biopsy I eliminated gluten and the rash went away. I will have to have my doc refer me to another derm who knows more about DH.

[trents]

  On 8/28/2023 at 6:10 PM, kalest said:

Thank you Nick!

I did end up getting the biopsy and it was negative. After the biopsy I eliminated gluten and the rash went away. I will have to have my doc refer me to another derm who knows more about DH.

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A small percentage of celiacs have DH without any enteric involvement.