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Is this DH? Only minor

Hotpotrae

By Hotpotrae
in Dermatitis Herpetiformis

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Hotpotrae Newbie
Hotpotrae
Posted

Hey guys!

Brand spanking new gal here!

sooooo long story short since September I’ve been experiencing ALOT of symptoms, GI, muscle, heart palpitations, dizzy spells, UBER fatigue, bloating to FriCk! histamine reactions, lactose intolerance for like a week then gone, hair thinning etc etc etc you name it I’ve had it!

I’m in the UK so everything takes pigging ages I’ve had my bloods done and I was also on the borderline to being low in ferritin so I started to take lactoferrrin which has helped abit. I take all the vitamins D, mag, cal, zinc. Im had a FIT test done and there’s no blood in my poop which is good! however

im sick and tired of feeling like dog poop, I can’t barely think straight and I’ve always been an active healthy person but I feel like I’m 100 years old since sept and I’m only 27!

Okay I’ll get to the point now, as I’ve been having a long frantic searches through google (I know I know it comes up you’re dying with everything) I found ye ole CELIAC, and I thought mmmmmm I’ve experienced a lot of these symptoms!

so recently like last weekend, I had abit of a crazy bad diet bash full of gluten goodies! Since then all my symptoms have come back (as before this weekend I was eating a animal based diet my normal diet) Last time this happened was last month when I went a wedding and again gluten goodies and all these crazy symptoms started happening AND then October the same thing a pizza weekend and all these crazy symptoms ever since September!

My symptoms also come in cycles like I can track them if that makes sense (first I’ll bloat then I’ll have GI issues, then muscle stuff etc etc)

so a couple of days after the first symptoms I’ll get these tiny little blisters (some on my feet) (in a cluster) but also just two on my collar bone one either side The same place each time! Is this DH? Does anyone else just get 1 blister or do they HAVE to be in clusters? 
sorry for the long a$$ winded story I’m super ADHD and excited to join this community 😂 (ps I’m also dyslexic so ignore the spelling mistakes) 

 

 

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trents Grand Master
trents
Posted

Welcome to the forum, @Hotpotrae!

Sounds like your blistery bumps could be DH and many of your other symptoms are classic for celiac disease. Just be aware that if you go in for formal testing for celiac disease then you must have been eating significant amounts of gluten for (equivalent of 3-4 pieces of wheat bread daily) for several weeks in order for the testing to be valid.

knitty kitty Grand Master
knitty kitty
Posted

Welcome, @Hotpotrae,

Yes, I have DH and get single DH blisters here and there.  I get them on the soles of my feet and the palms of my hands and on other spots.  

DH is pressure sensitive, so the blisters can appear after under elastic bands on bras and undies.  Perhaps the ones on your collar bones are from a garment or jewelry that rests there.  

I had a DH bump where I rested my pen to write, and one where my needles rest while knitting.  I have gotten them on the palms of my hands after pushing a grocery cart around.  

Getting a diagnosis would require doing a gluten challenge (consuming gluten for a period of time) in order to get the antibodies to a level where they can be measured in the blood and undergoing an endoscopy to check for damage to the small intestine.  

Having the DH bumps biopsied to check for Celiac antibodies is another option.

Genetic testing for known genes for Celiac Disease is another option.  Some of us are seronegative and may not test positive for antibodies.  Thiamine deficiency, anemia and Diabetes can cause seronegative results.  

 

According to recent research, updates to the gluten challenge are being implemented.
Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.
While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  
Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Do consider taking a B Complex supplement and additional Thiamine.  Many of your symptoms are indicative of nutritional deficiencies in the eight essential B vitamins.  


Keep us posted on your progress!

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