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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do Reactions To Gluten Get Worse The Longer Diagnosed?
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31 posts in this topic

6 hours ago, Worsum said:

So then there is an allergy going on with something in the lotions outside of the gluten? That would make sense as well. I was told by my doctor that gluten can be absorbed through the skin and cause reactions as well. This is why I thought the lotion was the issue. And since I am so very reactive to absolutely everything right now sometimes it's hard to tell the difference between an allergic reaction and the celiac response. This is all still very new to me.

Karen is right.  The scientific community agrees that gluten can not be absorbed into the skin.  However, you can have more than just celiac disease going on.  You might have an allergy or intolerance to any of the ingredients.  Who knows?  

Personally, I make sure that all products that might come into contact with my mouth, are gluten free. That includes anything I put on my lips and on my hands.    Do I know the source of say, tocopheryl, when I am in the store?  No (am not going to waste time looking it up or waiting to call the manufacturer).  I just do not buy the product.  Piece of mind is priceless.

When I first moved out, I went to make a sandwich.  The mayo in the frig (roommates) had been there for a while.  Was it safe?  Called home and my Dad said, "Is it worth a buck to get food poisoning?"  Obviously not.  So, I ate my sandwich dry and later purchased a new jar (dated it upon opening and still do to this day).  

I have allergies to all kinds of weird things.  A bug bite can cause me to develop a full body rash/hives and not just a localized area.  The rash will be way worse if I am having a celiac flare-up (have been exposed to gluten). 

If in doubt avoid it.  Soon, you will get the gluten-free diet down.  There is a steep learning curve and honestly, in the beginning, it is hard to think.  Best to keep to simple things.  Less worries and you reduce the risk of a glutening.  

 

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The problem with lotions and shampoo etc is that once it is on your skin/hands, it is easy for it to get in your mouth.

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I have definitely learned first hand about the ingesting part of the gluten thing. Even a little soya sauce or teriyaki sends me into the 'bowels' of despair for hours and can last days. The pain is terrible. Glad to know that at least the lotions won't actually do major damage as long as it's topical I can at least deal with the rashes. Thanks for the help in understanding the difference. :-)

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I am new to Celiac and honestly don't know why I react to certain foods - like Honeydew melon. I was told that melon is good the first day but starts producing mold soon after.

 Some of us may have allergies and they are masked/covered by gluten issues.  My mother and I both wind up with a cardiac arrhythmia, which causes dizziness and totally wipes us out once the reaction is over in 2-3 days.  For us,  the dizziness is due to the allergic response, and then also have the bad stomach to go with it.

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1 hour ago, Momma Donna said:

I am new to Celiac and honestly don't know why I react to certain foods - like Honeydew melon. I was told that melon is good the first day but starts producing mold soon after.

 Some of us may have allergies and they are masked/covered by gluten issues.  My mother and I both wind up with a cardiac arrhythmia, which causes dizziness and totally wipes us out once the reaction is over in 2-3 days.  For us,  the dizziness is due to the allergic response, and then also have the bad stomach to go with it.

Welcome to the forum!  Check out our Newbie 101 adbpvice for some valuable tips.  

Most of us have temporary or sometimes permanent food intolerances due to intestinal damage.  You might like this Article which features Dr. Fasano, a leading celiac GI expert which explains the possible reasons why:

http://www.npr.org/sections/thesalt/2015/12/09/459061317/a-protein-in-the-gut-may-explain-why-some-cant-stomach-gluten

 

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Hi!

i was diagnosed in January of 2017 by biopsy. My main symptoms were acid reflux/indigestion, bloating, and fluffy and loose bowel movements. Luckily, I was diagnosed early, and the amount of damage to my intestine is probably less than what's typical. 

After going gluten-free, I did at first think I felt worse after getting glutened because I got used to feeling better and was hyper aware of any symptoms. It was also difficult to determine the cause because I'd only experience mild bloating and fluffy/loose bowel movements, which were sometimes not occurring until the next morning.

In February or March, I went through a bout of denial hoping I had tropical sprue instead of celiac because I had done a lot of traveling in areas where you can contract it.  So we ordered pizza and the breaded chicken bites from Dominoes.  I felt bloated - but who isn't after eating a meal like that - and didn't have diarrhea until the next afternoon.  

I was careless today and didn't read a label until 2 minutes after I had consumed the fish oil and saw it was processed in a facility with wheat. After only 15 minutes or so, I started feeling extremely nauseated, a little achey, and then had diarrhea. I am feeling really tired, have that same hangover feeling others have mentioned, tired and just blah all around. 

So, yes, I feel my reactions have become not only worse but more immediate. The one benefit is that it's been a lot easier to narrow down the cause! 

 

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    • Hi kelzz..........the only way you will find out if the increase is from gluten exposure is to have your doctor run the correct test.  I have said this a million times on this forum but I will say it again.....the DGP/IgA tests for reaction to gluten ingested. The tTg/IgA tests for intestinal damage and that can be elevated from other autoimmune diseases, or from ingested gluten.  So you are either being glutened in sneaky ways OR you may have another autoimmune issue going on. Sorry my answer is so late but I have been on vacation. I hope this information helps you!
    • Ok, so long story, but I'm hoping some knowledgeable folks can chime in and tell me if a) I'm not crazy for thinking this sounds a lot like celiac and not a lot like anything else and  are the tests being run the right ones? I had malabsorbtion symptoms my whole life, rashes on the inside of my elbows and knees, chronic constipation, chelisis, brittle cracking nails, my hair sheds a ton, irritation on the edges of my scalp, blistery rashes on my hands, low iron, low blood sugar, bloating, painful gas (like bring me to my knees type). I pretty much just accepted it as my normal, and when I went to get the skin issues checked out in my early 30s, I was just told it was eczema and sent away. The rashes on the insides of my elbows and knees went away when I was about 15 or so, but in my 20s I started seeing a blistery, itchy rash on my elbows occasionally. Fast forward to 2015, and I have a terrible outbreak of GI symptoms (always constipation with me, with the occasional horrible D experience sprinkled in) along with a pretty bad itchy rash on both elbows. I start researching and find that a lot of what I have experienced sounds like DH/celiac. By the time I get my referral in and appointment to the GI doc, I've decided to cut milk out of my diet. I thought back to when I had the last period of time where I had no GI symptoms, and it was when I was last deployed. The dairy in the chow hall was either expired or near it, so I lived on eggs, rice, and chicken, and hot sauce. ;p. Once I cut out milk, and I saw a pretty impressive relief of most of my symptoms. The chelisis is gone, my rash disappears, bloating is much better, gas pains are gone. I get tested for celiac- negative, lactose intolerance- negative, SIBO- positive. Two rounds of antibiotics 6 months apart and my SIBO (methane type) clears up. Basically they said I had IBS-C and my skin issues were likely unrelated. I'm pretty sure my issue with milk is casein-related, because my son has the same issues with casein, and I sure have GI issues when I drink it. (TMI... mucousy rabbit poo). So I figure most of my issues have cleared up, no active rashes, good right? Nope. Since then, I had a couple outbreaks on my elbows, but they went away fairly quickly, My scalp rash thing ebbed and flowed, and my hair still sheds a ridiculous amount. About a month ago, I had another rash outbreak on both elbows, a couple blisters on my hands... and it stayed. After a month of rash, I finally contacted my doc and said "look, this rash is active, please take a look." Just as if it sensed it, the rash started clearing, that same day. :-< By the time I saw her a week and a half later, it was gone, save for a couple scabs. So, good news is my doc disagreed with the GI doc and said it sounded auto-immune to her. I'm military, so I get what I get for referrals, labs, and doctors, but she's luckily very good and knowledgeable. She ran the following tests: Complement Panel: Awaiting results C-Reactive Protein: Awaiting results Celiac Disease Ab IgA Panel: Awaiting results Tissue Transglutaminase Ab IgA: Awaiting results
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    • I've tried 3 shampoos and a skin cream, sorry can't recall names! It can keep it under control but I want to know why it happened in the first place. I was already gluten-free, and never had it in my life beforehand. Just looking for a magic cure
    • There isn't a cure that I'm aware of. Mine is much, much better since I went gluten free but it's liable to recur, especially if I get run down. Nizoral is most effective shampoo but it contains wheat protein so take care!
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