Celiac Rash DH - Grown Alchemist Brand

[Jenna1028]

Hi Everyone, 

I'm new here.  I recently discovered this site after an extensive search of celiac & DH. 

I recently traveled with my husband and developed a rash. First, it was on my shoulders. Then it spread to the upper skin of my elbows. Then it traveled to my knees. Then it traveled to my ankles. Then it traveled to my hips and lower back. Weird that it traveled at the same time, to the same place, on opposite side of my body. This is how I knew it was something other than just a simple rash. 

I've been so frustrated. I've had rashes my entire life. When I was a kid they thought I had the chicken pox six times - unheard of. No one could figure it out. My entire life, no one could figure it out. "oh, it's stress," and "oh, it's just a basic rash and you've come across something..." Duh! Really? 

Then after this lovely vacation, and a rash that's lasted and spread to various areas for six weeks, I got so frustrated that I started googling, "rash on both elbows," and boom - here you all are!! 

So. Today I decided to post because I figured out the cause of my rash, (after weeks of living only on chicken soup, veggies, and fruits, I knew I should be detoxed by now) ...

So, when we were on vacation I used a product called "Grown Alchemist". They really are an amazing brand, (and this is no way a bash). The hotel we stayed in offered their shampoo, conditioner, and body gel in the room. I LOVED it. Took the extras home, and today, as I sat down to order more, I thought 'I should check the ingredients again - just to be on the safe side'. And they've finally updated their ingredients list - and there it was, "wheat germ". wth. 

So frustrating. I looked weeks ago, and should have made a call to the company since the ingredients weren't listed. (I guess they were updating their website).

Anyway. This has been a blessing in disguise because now that I know I have DH, it explains A LOT. I've been using products that have gluten in them, without knowing they contained gluten. I was diagnosed with a wheat allergy fifteen years ago, (not celiac) and as everyone knows, that's different. After cutting wheat from my diet, I've still had ongoing skin issues and never took the time to research. Well after being home for weeks, with no energy and scabs all over me - let's just say I've have plenty of time!! 

So I wrote this as part informational, but also to say thank you for everyone who takes the time to post info on here, because the info has led me to solve what's been ailing me for 45 years and now I finally have answers! So thank you!! 

 

[cyclinglady]

Welcome!  

DH is awful and to have a wheat allergy on top of that too!  Because of your wheat allergy, you must be careful about applying topical products.  A DH reaction requires the consumption of gluten foods, right?

As a celiac, I know I am careful with shampoos, hand lotion, and lipstick to prevent accidental  ingestion of gluten.  

[Jenna1028]

On 11/26/2019 at 6:33 PM, cyclinglady said:

Welcome!  

DH is awful and to have a wheat allergy on top of that too!  Because of your wheat allergy, you must be careful about applying topical products.  A DH reaction requires the consumption of gluten foods, right?

As a celiac, I know I am careful with shampoos, hand lotion, and lipstick to prevent accidental  ingestion of gluten.  

Hello! And thank you for your reply!

For me, I had genetic testing done and that's how the Celiac was discovered. Given that I have an allergy to wheat, I have been very careful to not consume foods with wheat for the last fifteen years. I thought I was careful about products, as well, but as it turns out I wasn't. I am now using an app "SkinSafe" its sponsored by Mayo Clinic and they have a lot of products listed.

I've decided - If I cannot see what's in it, I'm just not using it. I figure there's another product/company that's transparent with their ingredients, so I opt for the transparent brand every time. 

As for my genetics, the markers were all there. Due to my avoidance of wheat, it was just by freak accident that my Celiac was even discovered. My blood tests came back negative, but my doctor said that's a good thing, and to be expected since I avoid wheat. 

Because of the DH - I cannot consume or use any product, whatsoever, that contains wheat or gluten. I think some people with Celiac like to "cheat" and eat things, at least it seems that way, and others follow a very strict protocol - I'll be doing the very strict protocol. This rash is not worth any satisfaction any kind of food can bring. 

In addition to the Celiac, I've also discovered that I am pre-diabetic, anemic, not to mention that I'm deficient in several other things like hormones and essential vitamins.

The good news about all of this is that because of this experience, and finally knowing what's wrong with me, I'm getting healthier. I've transitioned to a plant protein based diet. I've lost ten pounds, and I've gone from having headaches every single day of my life, to having six in the last month. It's an absolute miracle! 

 

[kareng]

About 30% of people have a gene for Celiac.  But only about 1% actually have Celiac.  So a positive gene is not diagnostic of Celiac.  But you have a wheat allergy - so you need to be almost completely gluten-free because of it.  

[Jenna1028]

8 minutes ago, kareng said:

About 30% of people have a gene for Celiac.  But only about 1% actually have Celiac.  So a positive gene is not diagnostic of Celiac.  But you have a wheat allergy - so you need to be almost completely gluten-free because of it.  

If you have genetic markers from both parents - you definitely have celiac. In my case, both parents have both markers. Genetically speaking, there was no way out for me.

If a person has one marker from their mother, and the same marker is absent in the father, then they have a 50/50 chance of ever developing Celiac. Their habits and lifestyle will decide whether or not they will develop celiac. And of course avoiding gluten would be a major factor for turning those genes on or off. 

Understanding DNA, and genetics in general, is the future for all autoimmune diseases, not just celiac.

Stating "30%" of this, or that, is false. There is no way to know how many people have the marker, especially since so many people are walking around undiagnosed, and untested. So saying "30%," is just patently false, and gives people the wrong information about testing and diagnoses. 

[kareng]

47 minutes ago, Jenna1028 said:

If you have genetic markers from both parents - you definitely have celiac. In my case, both parents have both markers. Genetically speaking, there was no way out for me.

If a person has one marker from their mother, and the same marker is absent in the father, then they have a 50/50 chance of ever developing Celiac. Their habits and lifestyle will decide whether or not they will develop celiac. And of course avoiding gluten would be a major factor for turning those genes on or off. 

Understanding DNA, and genetics in general, is the future for all autoimmune diseases, not just celiac.

Stating "30%" of this, or that, is false. There is no way to know how many people have the marker, especially since so many people are walking around undiagnosed, and untested. So saying "30%," is just patently false, and gives people the wrong information about testing and diagnoses. 

But I get my info from actual Celiac Doctors.  I didn’t make it up.  Sorry,  I should have said “ up to a third”.  
 

  “The gene test does not diagnose celiac disease. It places an individual into an at-risk group for celiac disease, which indicates the individual should be closely monitored with antibody testing in the future. When the genetic predisposition for celiac disease was first detected (on Chromosome 6), researchers noted that having the genes are required for the disease to develop, but that’s not the only factor. In fact, up to one-third of the US population has the genes for celiac disease. This means that people with DQ2 or DQ8 can develop celiac disease at any time.”

https://www.cureceliacdisease.org/screening/
 

 

 

[Purpletie3]

We sound very similar. It wasn't until my diagnosis as Celiac that I looked further and changed all my skin care products, shampoo, makeup.  Amazingly, the skin rashes (Stress rashes according to my Dr & Derm) my head rashes, my canker sores cleared up! Then a year later I started rashing out on the insides of my elbows, cleavage, butt crack and back etc....Yup- I had purchased a flock of chickens and been reaching to the feed bag. Changed their food and the dog food and no more rashes!

My skin rashes started for me at 13. (Chicken pox 3x...really?) Anyhow, it only took another 30 years for the Celiac diagnosis.

I found a skin balm made by Dr Morse...    https://www.drmorsesherbalhealthclub.com/  that is a magic healing machine for me. Bites, rashes, cuts, burns...works wonders.

I went plant based for almost a year for healing with intermittent fasting and herbs! Best of luck to you on healing your body and restoring health!

 

 

[GFinDC]

Hi Jenna1028,

They test for DH by taking a small skin biopsy from clear skin next to a lesion.  If you have DH, you have celiac disease.  But, you need to be eating a gluten diet for 12 weeks (gluten challenge) before getting the skin biopsy done or the test won't be valid.  You may not want to be tested and that's fine.  Doing the gluten challenge can be kind of rough on people.

You said there are some nutrient deficiencies.  Here's an article talking about the nutrient deficiencies that people with celiac may have.

https://www.nutraingredients.com/Article/2019/07/02/Micronutrient-deficiencies-Researchers-discover-change-in-celiac-disease-symptoms?fbclid=IwAR161smy-fIeeDkc7Zsl1SzQ5Op1WbHmhJTJJSFfxpR3SRMlwogBEO96f_0

Nutrient deficiencies are the result of damage to the small intestine lining (villi).  The villi are little projections of tissue that absorb nutrients in our guts.  Celiac disease destroys those villi making it hard to absorb nutrients.

Celiac disease reactions are triggered by wheat, rye and barley.  About 10% of us also react to oats.  You may find that your gut starts having more issues after going gluten-free.  People often enough have a stronger gut reaction after being gluten-free a while and being glutened.

There's a good chance your doctor didn't test you for celiac when they said you have a wheat allergy.  If they had tested for celiac antibodies you may have been diagnosed celiac back then.  But there is a problem with DH suffererers that they often don't test positive on the celiac antibodies even though they have celiac disease.

Anyway, welcome to the forum!

Edited December 14, 2019 by GFinDC

[squirmingitch]

On 12/12/2019 at 2:06 PM, Jenna1028 said:

If you have genetic markers from both parents - you definitely have celiac. In my case, both parents have both markers. Genetically speaking, there was no way out for me.

If a person has one marker from their mother, and the same marker is absent in the father, then they have a 50/50 chance of ever developing Celiac. Their habits and lifestyle will decide whether or not they will develop celiac. And of course avoiding gluten would be a major factor for turning those genes on or off. 

Understanding DNA, and genetics in general, is the future for all autoimmune diseases, not just celiac.

Stating "30%" of this, or that, is false. There is no way to know how many people have the marker, especially since so many people are walking around undiagnosed, and untested. So saying "30%," is just patently false, and gives people the wrong information about testing and diagnoses. 

How do you know that 1/3 of the U.S. population has the genes for celiac disease?

Epidemiologic studies testing large numbers of normal, healthy people from the population at large have established both the prevalence of the HLA-DQ2/DQ8 genes as well as the prevalence of celiac disease (from those with highly positive tTG). June, 2017

http://www.cureceliacdisease.org/faq/how-do-you-know-that-13-of-the-u-s-population-has-the-genes-for-celiac-disease/

 

Are having the genes and symptoms enough to diagnose celiac disease?

No. Many people have the genes and the symptoms, but do not have the disease. It’s difficult to diagnose because the symptoms are common to many health disorders. In addition, nearly 1/3 of the population has at least one of the genes and many never develop the disease. July, 2012

http://www.cureceliacdisease.org/faq/are-having-the-genes-and-symptoms-enough-to-diagnose-celiac-disease/

[squirmingitch]

I would also turn your attention to this:

https://nationalceliac.org/celiac-disease-questions/celiac-genes/