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PMLE eruption related?

T burd

By T burd
in Related Issues & Disorders

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T burd Enthusiast
T burd
Posted

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? 
 

 

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trents Grand Master
trents
Posted

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 Grand Master
knitty kitty
Posted

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 Grand Master
Scott Adams
Posted

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 Enthusiast
T burd
Posted
  • Author
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 Grand Master
knitty kitty
Posted

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 Rookie
CatrionaB
Posted

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.

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T burd Enthusiast
T burd
Posted
  • Author
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 Enthusiast
T burd
Posted
  • Author

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

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    • Jacki Espo
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      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
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      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
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