PMLE eruption related?

[T burd]

We noticed a few years ago that my daughter was getting rashes from the sun. I had recently been diagnosed with celiac at the time and she was 6. I have her blood tested for celiac and it has been negative each year. I did end up getting her the genetic screening and it was negative for celiac genes. I know that’s only about 95% accurate since there are other genes involved that they don’t screen for.

when she was a toddler the doctor said that she had “ toddler diarrhea“. Her bowel movements were all loose for about 3 years.

My house has been gluten-free for about a year. Before that there was barely any in there for a few years but they were eating gluten when we went out. One summer after her diagnosis of PMLE the previous year (2020) she didn’t have any PMLE. We were really good about keeping a hat on her and a long sleeve swimsuit and zinc sunblock and limited eating out for pandemic reasons. 
This school year I’ve been packing her lunch and it’s always been gluten-free. But she had been having the rash on and off since last summer. I live in Florida so she gets sun exposure almost all year.

She had a few months in December through February without the rash. We went on spring break where she was eating gluten for three days while at restaurants. Her face and rash swelled up so bad like never before. I decided to have her go gluten-free and she hasn’t been having a sun rash since. Then One day she ate a cake pop at a party and within two days she had little bumps on her face again. Another day two weeks ago The class mom at school who was supposed to get her a gluten-free pizza from dominoes when they had a pizza party, put the white sauce on it instead of “light sauce” and it has gluten in it. So she got hives again all over her face. 
 

Has polymorphic light eruption been connected to gluten? Sun activated hives? 
 

 

[trents]

Seems like you have all the evidence you need to make a connection between the two. Your daughter may also have NCGS for which there is no test yet.

[knitty kitty]

This article should be of interest to you.....

Treatment of polymorphous light eruption with nicotinamide: a pilot study

https://pubmed.ncbi.nlm.nih.gov/2942169/

"In a pilot study, 42 patients suffering from polymorphous light eruption (PLE) were treated with oral nicotinamide, 3 g daily, for 2 weeks. Twenty-five patients remained free from lesions despite extensive sun exposure. We suggest that an abnormality in tryptophan metabolism is important in the aetiology of PLE, and that nicotinamide administration partially corrects this."

[Scott Adams]

Unfortunately there is no test yet for non-celiac gluten sensitivity, as @trents mentioned, but ~10x more people have this than do celiac disease. A gluten-free diet is recommended for either condition.

[T burd]

5 hours ago, knitty kitty said:

This article should be of interest to you.....

Treatment of polymorphous light eruption with nicotinamide: a pilot study

https://pubmed.ncbi.nlm.nih.gov/2942169/

"In a pilot study, 42 patients suffering from polymorphous light eruption (PLE) were treated with oral nicotinamide, 3 g daily, for 2 weeks. Twenty-five patients remained free from lesions despite extensive sun exposure. We suggest that an abnormality in tryptophan metabolism is important in the aetiology of PLE, and that nicotinamide administration partially corrects this."

Interesting. I had seen something about vitamin D and PLE. So is gluten interfering with tryptophan metabolism? Is that possible? 

[knitty kitty]

Very interesting rabbit hole....

Here, see for yourself!

Effect of psoralen-induced photodermatitis on tryptophan metabolism in rats

https://pubmed.ncbi.nlm.nih.gov/7460074/

And...

https://en.m.wikipedia.org/wiki/Kynurenine_pathway

And...

The Effects of a Gluten-Free Diet on Immune Markers and Kynurenic Acid Pathway Metabolites in Patients with Schizophrenia Positive for Anti-Gliadin Antibodies (AGA IgG)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7185031/

 

[CatrionaB]

Could also be dermatitis herpetiformis, a skin condition closely related to celiac disease. I started getting it as 8 month old baby, it took me 26 years and many health issues later to finally get diagnosed with celiac disease. If it is dermatitis herpetiformis, this would mean also celiac disease, they usually do a skin biopsy right beside the rash to check for antibodies.

[T burd]

1 hour ago, knitty kitty said:

Very interesting rabbit hole....

Here, see for yourself!

Effect of psoralen-induced photodermatitis on tryptophan metabolism in rats

https://pubmed.ncbi.nlm.nih.gov/7460074/

And...

https://en.m.wikipedia.org/wiki/Kynurenine_pathway

And...

The Effects of a Gluten-Free Diet on Immune Markers and Kynurenic Acid Pathway Metabolites in Patients with Schizophrenia Positive for Anti-Gliadin Antibodies (AGA IgG)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7185031/

 

I’m not sure I’m following all the info in the rabbit hole. A bit over my lupus head.

I saw one study say PMLE is in 20% of Scandinaian population and she has a lot of Scandinavian blood.

this is saying PMLE is autoimmune and that vitamin D helps 

https://clinicaltrials.gov/ct2/show/NCT01595893

 Her PMLE  May have gotten a lot worse since she tries to avoid the sun/rash and doesn’t get a lot of D. A vicious cycle.

The gluten-free diet seems to work. So it likely does have to do with the metabolism of  tryptophan also. 
 

Now if only I can get scientists to catch on  and do some studies for answers.

 

1 hour ago, knitty kitty said:

 

39 minutes ago, CatrionaB said:

Could also be dermatitis herpetiformis, a skin condition closely related to celiac disease. I started getting it as 8 month old baby, it took me 26 years and many health issues later to finally get diagnosed with celiac disease. If it is dermatitis herpetiformis, this would mean also celiac disease, they usually do a skin biopsy right beside the rash to check for antibodies.

It only happens with sun exposure though. Not gluten alone 

[T burd]

also it is more like hives than that and got puffy last time.