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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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jennifer.maffei

Light Sensitivity

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I've done a lot of research for my husband who has undiagnosed DH. He's had it for the past 20 years but has been misdiagnosed and seems like the photos in the DH photo bank match perfectly. Anywho, I wanted to ask a question on his behalf as I have not seen this topic (although I have read many posts but not all).

 

Does exposure to sunlight, wearing sleeveless shirts, worsen the blisters or itchiness?

My husband says whenever he is in direct sunlight for too long he starts itching more, blisters appear or become more raised, etc.

 

Your input is greatly appreciated. Thanks!

-Jennifer

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For me not at all.  Sometimes getting sweaty makes my dh itch more.  What you are talking about sounds like the rash that people get from Lupus.  That is very light sensitive.

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Some have said the sun makes their dh go crazy. Some have not. Personally, I have not found that to be the case however, I have limited my sun exposure to very short periods of time. I WILL say though that HEAT makes my dh go crazy. What do you get in your skin when you're in the sun? HEAT. It heats up your skin. So which came first the chicken or the egg? The sun or the heat?   ???????

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If the pool water is cool I don't seem to have a problem with being in the sun.  I have had horrible break outs on my scalp after a day at the beach and not being in the water.  Maybe it is the heat . . . I have to agree with Squirmy, sun or the heat ? ? ?

 

I was majorly broken out this past summer and had to keep the car and house cool or the itch was unreal.  I am on Dapsone now and have a script for Traimcinolone Acetonide Cream, USP which helps.  Not had the horrendous itch since the end of October.  

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heat, humidity and sweat...absolutely make the itch worse. I mean if you're sweating, the salt goes into any open lesions, you're automatically itching and stinging! Here in India, the heat and humidity are huge factors, over 100 for most of the year, and not much less than that at night. In fact, we're planning on going back home to Aus for the hot season, partly because that's how bad it makes my skin. But more than the sun, I would say it's humidity.

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I agree with the humidity factor too. My hubs & I have both noticed that dampness in the air makes us itch more. Even when it's not that hot but say on a day when it's raining & the humidity is on upwards of 80 & 90% --- makes me itch like gonzo! But in the summer --- OY! I live in Fl. where humidity is king & it really makes a difference when it's both hot AND humid.

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Thank you so much for everyones views on this. Whether it is heat or sunlight like you all are mentioning does have us wondering but alas, does it matter?

Heat or sun is pretty much the effector of his bumps becoming raised more in the summer. It's nice to see, although unfortunate for everyone to experience, the same sort of situation though. It has driven him nuts the past couple summers and he always asks the same question...is this caused by summer sun/heat? Now I can give him an answer. :-)

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Just saw this thread.

 

While I have never had blisters....I get severe itchy-red patches when I get glutened..I also have had severe heat/exercise intolerance "allergy" my entire life which has gotten worse each decade (red rash - severe blushing - breathing issues).  Removing gluten did not resolve this.  Removing high histamine and histamine inducing foods has finally improved my reaction to heat, exercise and direct sunlight (photo-sensitivity).

 

Thought you might like to read this simple explanation of histamine intolerance:

 

http://www.allergyuk.org/downloads/factsheets/intolerances-and-sentivities/Histamine%20Intolerance.pdf

 

 

PS...welcome to the forum :)

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Yes, I definitely get a pronounced reaction to sun exposure.  Before I ever even had DH, I would get a rash from the sun that was nearly identical to my DH rash.  I always thought it was some sort of allergy, and I'm still not sure if it even ties into DH in any way.  It's just interesting.  I've been tested for Lupus and I don't have it.

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I grew up with (and still am affected by) polymorphous light eruption (aka sun poisoning) which is a mass of hives on the sunlight exposed (or UV exposed skin). Mine starts showing up about 5 minutes in the sun if I don't have sunscreen on. The sting is super intense (similar to DH) and it itches like heck!! BUT when you even gently scratch it it hurts so badly!! I know my sun poisoning rash does not look like most others rash from waht I've seen online, I have seen little blistery pimple-like rash that is supposely sun poisoning. Mine are huge melted together hives (if it's bad enough). I am 28 years old (almost 29) and I've had it my entire life. My mom had it and her mom had it. It's apparently hereditary. Though apparently it goes away with advancing age. Mine hasn't gotten better over the years so I'm not sure if I'll ever be rid of it.

 

I'd google polymorphous light eruption and see if it matches what you are seeing. I don't know yet if it's in any way related to celiac, though I wouldn't be surprised if it were.

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I had polymorphous light eruption for years, but found after I stopped eating gluten it actually went away. During the PLE my dermatologist had me apply 50+ spy sunscreen Plus a lotion that contained zinc oxide.  This would help keep the rash/hives at bay.

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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