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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
How are you feeling Rachel??

I'm feeling like I wanna eat spaghetti. :P

I had a bad reaction yesterday after I ate lunch. It was the worst in a quite awhile. Even though I still react to all the foods.....its usually not bringing me down. This last reaction gave me a REALLY bad headache that lasted about 24 hours. :(

It was because I left frozen beef on the counter to thaw...I kinda forgot about and it I'm not sure how many hours it was out before my mom asked me why it was there. :ph34r:

It was there about half the day I think.

Anyways, I can only have very fresh meat because I'm sensitive to amines. I cant eat leftovers, overly cooked meat or meat thats not totally fresh...and definately not meat thats been sitting out all day. :rolleyes:

So yeah...I got a huge reaction from my beef yesterday.

I started feeling better about lunchtime today...so I ate a big piece of cake at work. :D

It was my boss's B-Day and the cake just looked to good to pass up. :P

Luckily I didnt get worse from the cake. Instead I just got totally "high". :o I was pretty hyper for a couple hours.....couldn't stop laughing.

A guy I work with said "How do you get high from cake??" :blink:

He said he wants to be toxic now too. :lol::lol:

I'm getting ready to go to a comedy club right now. :)

Seeeeee....alot has changed in 2 years!! I actually leave the house for more than just work and food!! Woo-Hooooo!!

Its just me and some other people I've worked with. Pretty sure Dave is going (as in The Village Idiot :P )....hopefully he doesnt cause too much trouble. :lol:

My headache is still there but at least its tolerable now. OMG....I will NEVER freakin EVER think about thawing meat out on the counter again!! :blink:

Stupid phenols! :angry:

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Rachel--24 Collaborator
Rachel--24
Posted
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so I feel like sugar is the only thing I have left! :lol:;)

Nooo....you still have the yeasties too. :P

Sorry....I couldnt resist. :lol:

Just kiddin...I know its hard but you gotta know that its not only YOU thats wanting the sugar....all the bugs are wanting it just as much. You'll definately do better with treatments if you're off the sugar.

I know you already know all this and I'm not trying to lecture...especially after I just posted about eating a big piece of cake for lunch!! :lol::ph34r:

Guest tamedandfoxed
Guest tamedandfoxed
Posted
I just spoke with Dr. H. He said it sounds like an upper respiratory infection and the Levaquin should cover it. It has nothing to do with the Lyme.

Oh man, i had a bronchial infection last november-- Antibiotics from that i think is how i landed here in the first place! ugh. good luck and i hope you feel better! Nettie Pot rinse would help clear out some of the mucus and bacteria.

AndreaB Contributor
AndreaB
Posted

Rachel,

Sorry about the meat reaction, but glad you feel well enough to go out tonight. Have fun! :D

:lol::lol: The guy's comment about the cake. :lol::lol:

confusedks Enthusiast
confusedks
Posted
I could see it in your eyes .... but it might take another Lymie to recognize the "I'm dying" look in the eyes.

Wow. Thank you for your honesty...as hard as it is to hear, I'd rather know. Yea, that describes it pretty well..."I'm dying." There are times when I feel downright depressed, and I don't feel that way, but I think there is a certain sense of "this sucks" all the time.

So, I think I'm going to take the medication after all. -_- I'm not exactly excited, but I figure if I really don't like it, I can get off of it.

And, holidays...this weekend is Passover. I get SO sad around holidays it sucks. :( It's like, yet another year has passed and I still feel the same way. The difference is that I have a diagnosis now...I didn't have a diagnosis a year ago, and I was really anemic without knowing it, and wasn't in school.

miamia Rookie
miamia
Posted
Happy anniversary OMG thread!!! :D:D

Wow....2 years already. :o

It went by fast but at the same time I feel like we've all known each other much longer. :)

Congrats to all of us...past and present Rachelvillians! :D

I think we've come a long way in two years...and I know I couldnt ask for a better group of friends to go through all of this with.

You guys mean the world to me. :wub:

Aint that the truth!! :lol::lol:

Its been alot of fun....alot of caring and sharing mixed in with some craziness and a whole summer of non-stop laughter. Good Times. :)

Rachel-

I second everytthing you said. You guys are my support system I know lately I haven't posted quite as much but the idea that I have this place is always such a comfort. I really love you guys and appreciate you all.

Miamia

miamia Rookie
miamia
Posted
Do you mean AD, instead of abx? LOL! It's Elavil at 50mg. They said to start slowly, and increase it.

The thing is, I don't know what to do! LOL! I was hoping someone would have a magical answer! :rolleyes: I can't seem to get off the sugar at all...it's really bad. I know I need to, but I just can't seem to. It's like I've lost so much...fun, friends, school, gluten, etc. so I feel like sugar is the only thing I have left! :lol:;)

I am really trying to work through a lot of issues that could be the *cause* for what I'm going through. But I just feel like there is no reason to be depressed...we do have meds for a reason. Ugh, if only you guys knew what I would have said about this 2 years ago, lol. I was SO against AD's, it's not even funny!

I tend to get really isolated when I'm not feeling well, so I don't know if I'm my "old self." Well actually, I am not my old self...I'm sick. I used to be really social, busy all the time, etc. That has changed, and I'm okay with that because eventually I will get better, but in the mean time, I don't know if there is any need to be depressed.

And, if I ask other people around me...well, let's just say I'm GREAT at hiding how I'm feeling. <_< People think I feel great when I feel like I'm dying...so I don't know.

Kassandra

reading this makes me think you dont need them just that you know you are going to get better says something very positive. You know what helped me when I started to feel really down actually being honest. I am someone who tries to be so tough I never let on to be people how bad I feel or how sick I am . When I drop the act though and let people in I can';t believe how much better I feel. Try it!!!

Miamia

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confused Community Regular
confused
Posted
Paula,

Sounds like a good plan to get the house ready for sale and move.

Julie,

I don't know about the foot patches. Seems lots of people us them without being under doctors care if they are advertised in magazines.

I am still torn on selling the house since my youngest daughter was born in this house. But i know if i want to be well, I need to get out. I am just hoping we dont run into more mold someplace else, as long as it is only in the bathroom then i can clean the rest of the house myself lol.

Julie, the only thing i have seen about the detox foot patches is people with high blood pressure or diabetis shoud not do them. I am doing them without an drs orders and my mom is going to go them. Her best friend does them and she works for an MD,

Do you mean AD, instead of abx? LOL! It's Elavil at 50mg. They said to start slowly, and increase it.

Yes i meant AD, sorry for the typo lol. I dont know anything about elavil, but is that the smallest dose that it starts at.

paula

CarlaB Enthusiast
CarlaB
Posted
Oh man, i had a bronchial infection last november-- Antibiotics from that i think is how i landed here in the first place! ugh. good luck and i hope you feel better! Nettie Pot rinse would help clear out some of the mucus and bacteria.

I'm going to have a full body nettie pot rinse in the Gulf of Mexico today! LOL I'm at the airport waiting for our flight.

Wow. Thank you for your honesty...as hard as it is to hear, I'd rather know. Yea, that describes it pretty well..."I'm dying."

Like I said, though, Kassandra, it takes one to know one. :) You didn't look "bad", I just recognized the look in the eyes. I look at those pictures of you and I and I see it in both of us. <_<

People never saw it in my eyes either .... until I started getting better, then people couldn't believe how different I looked.

You'll get there. Miamia has a good point about letting your guard down.

Green12 Enthusiast
Green12
Posted

Rachel, it sounds like even though you continue to have reactions they aren't taking you down as much or for as long as they did before.

I am still torn on selling the house since my youngest daughter was born in this house. But i know if i want to be well, I need to get out. I am just hoping we dont run into more mold someplace else, as long as it is only in the bathroom then i can clean the rest of the house myself lol.

Julie, the only thing i have seen about the detox foot patches is people with high blood pressure or diabetis shoud not do them. I am doing them without an drs orders and my mom is going to go them. Her best friend does them and she works for an MD,

Paula, I know you have a difficult decision to make about the house. If you do have a mold problem it could be the thing to keep you from getting well, and the rest of your family could develop more health problems from it.

That's why I mentioned those mold plates, I was thinking you could measure the mold toxicity in your house first before making such a big decision.

I don't know, just a thought.

Thanks for your input about the detox foot pads.

I'm going to have a full body nettie pot rinse in the Gulf of Mexico today! LOL I'm at the airport waiting for our flight.

Like I said, though, Kassandra, it takes one to know one. :) You didn't look "bad", I just recognized the look in the eyes. I look at those pictures of you and I and I see it in both of us. <_<

People never saw it in my eyes either .... until I started getting better, then people couldn't believe how different I looked.

How exciting Carla, have fun!

I have the death in my eyes too. I look healthy and like I might be feeling good, but my mom always remarks she can see it in my eyes and on the days she says that those are the days that have been my bad days.

I do think the eyes reflect what is going on inside.

Kassandra, I also think miamia brings up a good point. Maybe you are not allowing yourself to show the bad days, or admit that to yourself or to others, possibly because of your expectations or other peoples expectations.

It might be quite freeing to let that go.

confusedks Enthusiast
confusedks
Posted
Kassandra

reading this makes me think you dont need them just that you know you are going to get better says something very positive. You know what helped me when I started to feel really down actually being honest. I am someone who tries to be so tough I never let on to be people how bad I feel or how sick I am . When I drop the act though and let people in I can';t believe how much better I feel. Try it!!!

Miamia

I'm working on letting people in. It's not easy for me. The reasons behind it are totally involved and blah, but I am working on it, and getting better at telling people how I feel.

The problem is, for so long, since I don't really tell people how I feel, people now think I'm complaining or over-reacting. So, it's not exactly a response to encourage "feeling telling." <_<

I have the death in my eyes too. I look healthy and like I might be feeling good, but my mom always remarks she can see it in my eyes and on the days she says that those are the days that have been my bad days.

I do think the eyes reflect what is going on inside.

....

Kassandra, I also think miamia brings up a good point. Maybe you are not allowing yourself to show the bad days, or admit that to yourself or to others, possibly because of your expectations or other peoples expectations.

It might be quite freeing to let that go.

I agree the eyes say a lot. You're TOTALLY right about the expectation thing...If I don't feel good, people don't know what to do, my mom included. It's really rough to have everyone "look to me" for health and positivity. Argh...it gets me to after a while.

----

I have decided I am going to try the medication and see how I feel. The fact that I am asking for help in this situation is HUGE growth for me. As Dr H said, I gotta let them help me. Being depressed won't help me get better, that's for sure.

Now I have to figure out a way to not let my mom know...ugh.

confused Community Regular
confused
Posted

[quote name='juliem' date='Apr 19 2008, 11:25 AM' post='420668'.

Paula, I know you have a difficult decision to make about the house. If you do have a mold problem it could be the thing to keep you from getting well, and the rest of your family could develop more health problems from it.

That's why I mentioned those mold plates, I was thinking you could measure the mold toxicity in your house first before making such a big decision.

I don't know, just a thought.

Thanks for your input about the detox foot pads.

I have the death in my eyes too. I look healthy and like I might be feeling good, but my mom always remarks she can see it in my eyes and on the days she says that those are the days that have been my bad days.

I do think the eyes reflect what is going on inside.

Kassandra, I also think miamia brings up a good point. Maybe you are not allowing yourself to show the bad days, or admit that to yourself or to others, possibly because of your expectations or other peoples expectations.

It might be quite freeing to let that go.

confusedks Enthusiast
confusedks
Posted
Kassandra, If i can let people in, there is hope for you. I have always been the strong one, never asking anyone for help. I felt i had to be the perfect daughter, student and friend in high school and college. Then when i got married i felt i had to be the best mother, wife and so forth. I would never ask for help for anything. But what did they get me. I now ask for help and let others in. At times it is still very hard, but im coming around. I still have that nagging voice in the back of my head to be perfect, but the thing is i know when to ask for help.

paula

That's the thing...for me, asking my Dr for medication is asking for help. I feel like I just need to do this and see how it goes. I'm not excited about starting the medication, but for right now, I have too much going on.

And yea, about the perfect daughter, etc...I can SO relate! It's funny when I am not perfect, people don't know what to do. Last night I was eating some french fries (fat for mepron :lol: ) and I dropped a piece of a frie, and my mom laughed at me. She said "you're always so poised...it's wierd to see you as a "human."" So, it's not just me putting the pressure on myself...the family adds to it. (So do I obviously...)

tabasco32 Apprentice
tabasco32
Posted
The thing is, I don't know what to do! LOL! I was hoping someone would have a magical answer! :rolleyes: I can't seem to get off the sugar at all...it's really bad. I know I need to, but I just can't seem to. It's like I've lost so much...fun, friends, school, gluten, etc. so I feel like sugar is the only thing I have left! :lol:;)

Yeah Kassandra, I know what you mean. I fell off the ice cream truck again. The tire got a flat. :(

Sugar is like a comfort food. Especially ice cream and chocolate. I feel everything was taken from me too!

Man, I really need to stop feeding these beastie boys!

I don't know if there is a magical answer. I do know that it's bad for us. Especially big pieces of birthday cake. :) You are not alone in this fight. Many people are the same way, including me. I think the hardest part of this illness is self control. Not feeding the bugs is the hardest part.

I feel more scared of myself than anything else right now. Did you know that bad yeast is more toxic than any chemical out thier? That's kind of scarey. Sometimes I have to remind myself of that.

tabasco32 Apprentice
tabasco32
Posted
A guy I work with said "How do you get high from cake??" :blink:

I never heard of getting high from cake, but I know that there's special brownies out there that do the trick. ;)

P.S.

Although I've never ate them.

confusedks Enthusiast
confusedks
Posted
I never heard of getting high from cake, but I know that there's special brownies out there that do the trick. ;)

P.S.

Although I've never ate them.

:lol: :lol:

confused Community Regular
confused
Posted
I never heard of getting high from cake, but I know that there's special brownies out there that do the trick. ;)

P.S.

Although I've never ate them.

Are those special brownies gluten, casein and soy free lmao. If so i want me some lol

confusedks Enthusiast
confusedks
Posted
Are those special brownies gluten, casein and soy free lmao. If so i want me some lol

LOL! I bet we could make them gluten-free, cf, sf! :lol: :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Are those special brownies gluten, casein and soy free lmao. If so i want me some lol

LOL...I'm sure they can be prepared that way. :lol:

Unfortunately for me, I cant tolerate HERBS!! :o I think without the herbs the brownies become alot less "special"...even if they ARE gluten, casein, soy, egg, sugar and everything else free. :lol:

Its ok...I definately dont need brownies! I'm pretty sure I've had a constant buzz going for the past 5 years now!! :P I think the yeast pretty much take care of that....and yeah...Lisa...I agree...its scary to think about what harm all that yeast by-product might be causing. :unsure:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
And, holidays...this weekend is Passover. I get SO sad around holidays it sucks. :( It's like, yet another year has passed and I still feel the same way.

I think many of us here can relate to this exactly. I remember lots of discussions about how difficult the holidays are and that for many of us its a reminder of yet another year that we are not completely well.

Having a diagnosis does make a huge difference though and I'd bet that next year when the holidays roll around you'll be feeling alot better about everything. ;)

This past holiday season was the most enjoyable for me since I got sick...and I think it will continue to get better from here on out. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Andrea,

Do you remember our conversation about my becoming less shy since I've gotten sick? I had some early signs of mercury "issues" with the rocking, head banging and extreme shyness.

They're all considered to be symptoms of mercury toxicity but I couldnt figure out why I'd be LESS shy and LESS inhibited now that I'm MORE toxic. WTH?? :huh:

So I think I finally realized that its not so much that I've finally "come out of my shell"...but more likely that I'm half drunk everyday of my life these past 5 years! :o

So yeah...no shortage of alcohol when the yeasties are living it up...and definately no shortage of stupidness coming from the girl who's hosting them. :lol::lol:

Yup...I've outdone myself again. :ph34r:

Wish I could blame it all on sweet potatoes!!

I guess I can blame it on the big piece of cake I ate....Hehe...yeah...its the CAKE's fault!!!! :lol:

Stupid yummy birthday cake!! :P

confused Community Regular
confused
Posted
LOL...I'm sure they can be prepared that way. :lol:

Unfortunately for me, I cant tolerate HERBS!! :o I think without the herbs the brownies become alot less "special"...even if they ARE gluten, casein, soy, egg, sugar and everything else free. :lol:

Its ok...I definately dont need brownies! I'm pretty sure I've had a constant buzz going for the past 5 years now!! :P I think the yeast pretty much take care of that....and yeah...Lisa...I agree...its scary to think about what harm all that yeast by-product might be causing. :unsure:

I hope you all know im kidding about really wanting some, I would like the brownies tho without the herbs lmao.

The yeast beasties are so mean. They really need to leave all of us alone. Then i wouldnt have to go back to the candida diet on monday.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I feel more scared of myself than anything else right now.

Oh Gaaaaawd...I can sooo relate to that right now. :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
The yeast beasties are so mean. They really need to leave all of us alone.

Yeah...and how completely WRONG is it that I have to wake up with a hangover because I ate cake!! :blink:

OMG....I used to be able to go out and get DRUNK and not wake up with a hangover. Now I cant even have a drink and I get a freakin hangover from FOOD. :huh:

Something is very wrong with this picture. :rolleyes:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
You guys are my support system I know lately I haven't posted quite as much but the idea that I have this place is always such a comfort. I really love you guys and appreciate you all.

Miamia

We love you too sweet Mia. :wub:

I'm glad you still find comfort and support here even when you're not feeling up to posting. :)

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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