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Why Does The Reaction Linger So Long
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I am wondering if anyone knows why the reaction to gluten lingers for a while. First the gas and stomach issues, mucus,D, joint pain, anxiety...etc....then I get a massive headache then C then finally cold sores all over my face. This all takes about 2 weeks and then I am good to go until the next time and it all repeats. Just wondering why it all is so drawn out?

Thanks!

Edited by GFreeMO
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I don't know why it's so drawn out, but I have the same problem. It takes me 10 days to 2 weeks to get it all out of my system. That's more frustrating to me than staying on the diet. I have no problem not eating gluten, but I get so frustrated when I get glutened by accident and know that's two weeks of my life that I'll feel bad.

Maybe that's how long it takes for it to get out of your intestines and blood?

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Yeah me neither although I'd be delighted to know what's going on over the 2/2.5 weeks I get nailed. All I know is that it makes me really really tired!!

I also get frustrated when I get glutenned especially when I try so hard to avoid it. I guess you just have to be wary of everything and anything that touches your lips.

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I am wondering if anyone knows why the reaction to gluten lingers for a while. First the gas and stomach issues, mucus,D, joint pain, anxiety...etc....then I get a massive headache then C then finally cold sores all over my face. This all takes about 2 weeks and then I am good to go until the next time and it all repeats. Just wondering why it all is so drawn out?

Thanks!

Thanksfoe posting about this, I follow strictest gluten free eating and I know I have been gluttened somehow, had 13 days chronic Diarhea, cannot leave house, cannot go up to hospital see my new born grandson, am reduced tears and I never cry. Feels like 7 months ago before celiac diagnosis, scares me that I will relaspe get wrdsw worse again.I am going to live on chicken broth, roast chicken, gluten free yogurt, blandest foods see if I can pull myself out of this nightmare. Terrilynne

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I am wondering if anyone knows why the reaction to gluten lingers for a while. First the gas and stomach issues, mucus,D, joint pain, anxiety...etc....then I get a massive headache then C then finally cold sores all over my face. This all takes about 2 weeks and then I am good to go until the next time and it all repeats. Just wondering why it all is so drawn out?

Thanks!

I don't know why it last so long either, but I did try something different the last time I was accidently glutened. Even though I felt horrible and had absolutely no energy and my joints ached...I made myself exercise....I have to say that I sweated more than usual but I felt better afterwards and my symptoms didn't last as long. I guess sweating is kind of like a detox for your body. I know most people will think there is NO WAY they can exercise when they feel so bad, but I think it helps. I didn't leave the house because I knew I couldn't get too far from the bathroom, so I popped a workout disk in and and suffered through it. I told my husband that no matter how sick I get in the future with accidental glutenings that I want him to encourage me to exercise because it definitly made a difference.

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I don't know if it will work for gluten (probably not), but a friend suggested I drink a glass of water with 1/4 to 1/2 teaspoon of baking soda to get the salicylates out of my body. I looked it up, and it IS suggested for metal poisoning, AND for salicylates.

That's probably why it WON'T work for gluten though - heavy metals are somehow bound in the baking soda and excreted. And for the salicylates, well, those are an acid, and I guess the baking soda neutralizes them.

Just a stab in the dark. Who knows, maybe it WILL work on gluten, and it can't hurt.

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Holy crap I feel for you guys, my symptoms(Diarhea) usually only last about an hr if I have a little bit of gluten accidentally.

also when I was undiagnosed but still having bad stomach pains my doctor gave me some pills to take when I was having problems and they actually helped and stopped the cramps within 15mins, not sure what they were called though sorry.

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I checked out a book on AI diseases about 2 years ago. I can't attribute the author, but she said a good soak with a mixture of epsom salts and baking soda (I believe two cups of the former and 1 cup of the latter) was really good as a detox soak. I personally like to add pepperment oil.

The soak has never hurt me, and has made me feel better than I felt before, so I thought I'd post. You should use water as hot as you can stand to soak in. I'm not a freak, but the book said you should lay in the hot bath and visualize the toxins being soaked out of your body. I can do that. I'm not sure if it helps (the visualization thing), but it's worth giving it a whirl when times are tough.

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I am wondering if anyone knows why the reaction to gluten lingers for a while. First the gas and stomach issues, mucus,D, joint pain, anxiety...etc....then I get a massive headache then C then finally cold sores all over my face. This all takes about 2 weeks and then I am good to go until the next time and it all repeats. Just wondering why it all is so drawn out?

Thanks!

I don't have the source to cite for you at the moment, but when I last looked up the reasearch, the chemical reaction that causes intestinal damage is somewhat self-sustaining in the intestines - it requires gluten to trigger it, but it can propel itself for some time after that. It lasts generally up to two weeks.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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