Celiac - Skin Issues and Diagnosis

[Km592]

Hi!

I have been struggling for years with skin issues and have been unable to receive a proper diagnosis. I have these painful red lumps that only appear on my elbows and knees, and have also struggled with digestive issues such as cramping and constipation. My GI performed an endoscopy to test for celiac but was told it was negative. I have an appointment scheduled with my dermatologist for a biopsy of my skin tissue and have also requested a blood test. 
 

Has anyone had any experience with this before? I recently cut out all gluten, it has been just over a week and the lumps have already improved. 

[trents]

Welcome to the forum, Km592!

First, do you know if your GI doc took biopsies of the small bowel lining when he/she did the endoscopy? Were these sent off to a lab for microscopic analysis? Unless the damage caused by celiac disease to the villi that line the small bowel is fairly advanced, it may not be visible to during the scoping.

Second, do your skin outbreaks have blisters in the bumps? There is a skin condition associated with celiac disease that some people manifest called dermatitis herpetiformis (DH) and it is definitive for celaic disease. No other known cause. DH bumps have little blisters.

Third, you should not have started eating gluten free if you are intending to have a blood antibody testing done for celiac disease. If you remove gluten from the diet, the villi of the small bowel begin to heal because you are removing the cause of the inflammation. No inflammation, no antibodies to detect. According to the Mayo Clinic guidelines, you should be eating two slices of wheat bread daily (or the equivalent) for 6-8 weeks leading up to the day of the blood draw in order to give accurate testing. Unfortunately, many doctors fail to tell their patients this or don't know to tell them.

[Km592]

12 minutes ago, trents said:

Welcome to the forum, Km592!

First, do you know if your GI doc took biopsies of the small bowel lining when he/she did the endoscopy? Were these sent off to a lab for microscopic analysis? Unless the damage caused by celiac disease to the villi that line the small bowel is fairly advanced, it may not be visible to during the scoping.

Second, do your skin outbreaks have blisters in the bumps? There is a skin condition associated with celiac disease that some people manifest called dermatitis herpetiformis (DH) and it is definitive for celaic disease. No other known cause. DH bumps have little blisters.

Third, you should not have started eating gluten free if you are intending to have a blood antibody testing done for celiac disease. If you remove gluten from the diet, the villi of the small bowel begin to heal because you are removing the cause of the inflammation. No inflammation, no antibodies to detect. According to the Mayo Clinic guidelines, you should be eating two slices of wheat bread daily (or the equivalent) for 6-8 weeks leading up to the day of the blood draw in order to give accurate testing. Unfortunately, many doctors fail to tell their patients this or don't know to tell them.

Hi! Thank you so much for the detailed response!

I was not informed about any type of microscopic analysis, my doctor just told me there was some mild inflammation but no villi damage which would indicate celiac. We were trying to get to the root of my digestive issues and at this point they really have left me without any answers.

It’s a patch of bumps that form, they almost look like fluid filled blisters. They are usually red or dark purple, and they are very tender to the touch. The bumps on my elbows are a lot smaller, but I get more of them grouped together. 

I attached a link that shows my Knee now that I have started to cut out gluten. It’s pretty mild compared to what I normally deal with, although I will say there are times when there is improvement and other times where it gets worse. And I had no idea that I shouldn’t try to alleviate the symptoms prior to testing, thank you so much for alerting me!

 

 

[trents]

I have not had personal experience with DH but from what I have gleaned from those on this forum who do, the pic you attached shows bumps that I believe could very well be DH.

It is important when having a skin biopsy for DH that it be done properly. Those in the know about these things on the forum say the biopsy should be taken from an area adjacent to the bumps, not from the bumps themselves. Apparently, not every dermatologist knows this. So, you might feel out the knowledge level of the dermatologist doing the biospy. One thing every veteran celiac victim will tell you is that we have to become our own advocates when it comes to getting proper dx. As a whole, there is a dearth of knowledge about gluten disorders in the medical community as a whole. It is slowly improving. We have learned to go to medical appointments with knowledge, being prepared to be appropriately assertive in order to get proper testing done. For many of us, it took 10 years or more to get a proper diagnosis and by that time, irreparable damage to body systems was done.

For the blood test, ask for the following tests be run:

• Total serum IGA
• tTG-IGA
• Deamidated gliadin peptide (DGP IgA and IgG)

Edited June 7, 2023 by trents

[knitty kitty]

@Km592,

Welcome to the forum!  

@trents has given you great information!  

As a veteran celiac survivor with dermatitis herpetiformis myself, sometimes we have more damage on our skin than apparent in our guts.  

I find avoiding iodine (as in iodized table salt,sea salt, dairy and shellfish) very helpful in reducing DH outbreaks.  

DH is also photosensitive, so wear a hat and cover skin if outside in bright sunshine.

Adding a Niacin Vitamin B 3 supplement will he clear the blemishes. 

Hope this helps!  Keep us posted on your progress!