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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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Hi everyone,

I was diagnosed as being 'gluten sensitive' (whatever that means) about 5 months ago when a doctor finally realized my 'malabsorption' of magnesium and other vitamins was causing my life long (23 years) migraine disorder. After months of taking a 3x the regular dose of vitamins just to stay alive - a doc finally made the gluten connection. Now I can stop spending all my money on vitamins!

Anyways, I started a strict gluten-free diet almost a month ago, and after an initial 2 week period in which I felt INCREDIBLE - I feel like I'm hitting some serious detox symptoms.

I missed a period completely (has never happened before, and it's back now - not pregnant), I broke out in RIDICULOUS acne on my face, back and chest (I've always had mild acne.. but it now worse than it has EVER been) and I've been ridiculously hungry and cranky. I ate more in two weeks than I ever had in my LIFE.

I feel like the symptoms are starting to let up a bit now - but they hit their real peek about 1.5 months into being gluten free. My period is back, and most of the acne is starting to scab over.. but man I wanted to hide underground things got so bad..

So, this is plea in hopes that my experience isn't totally abnormal - perhaps there is some light at the end of this tunnel?? is this going to get better :(?

Any advice or experience would be appreciated. THANK YOU ALL SO MUCH.

Reading this forum has been a lifesaver for me overall.

**also, since going gluten-free and being able to slightly lower the vitamin dose - I am still migraine free! So that is one good thing. (and by migraine disorder, I mean it was so bad I was considered disabled until this year.. A MIRACLE)

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So, this is plea in hopes that my experience isn't totally abnormal - perhaps there is some light at the end of this tunnel?? is this going to get better :(?

Hi Steph:

The answers are Yes! Yes! and Yes!!! You are right on the normal curve of post-gluten recovery. Such a relief to get rid of the gluten, feel terrific, and then the body says, "Wait a minute, I was addicted to that stuff, I think I need it!!! Gimme, gimme, gimme" and you are in withdrawal, grumpy, and out of sorts and, as you say, detoxing. You are also starving for the nutrients you have not been able to absorb and this hunger period goes away after a while. Right now, just go with it because your body needs the nourishment. It will know when to stop. I hope your acne keeps on improving.

What a great thing that your migraines have gone already!! Yay, a miracle indeed.

Welcome to the board and if there is any way we can help, let us know.

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You could be detoxing but you could also be getting CC somewhere. We do often become more sensitive to very small amounts of gluten after we are gluten free. Make sure you are doing everything at home to make sure that you are safe and since you are experiencing skin issues do make sure all your shampoos etc are free of gluten. Welcome to the board and congrats on the migraine issue. I suffered from them also for many years but not as badly as you did. It is quite a relief when the pain stops.

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I went through a lot of that too, including the acne. I ate a tonne for about 2 months, and I lost 10 lbs doing it, and then my appetite dropped way down. I'm now not nearly as hungry as i was before going gluten-free.

It really is great to lose the migraines isn't it! Mine weren't as bad as yours but I had days where turning your eyes hurt, and when it became hard to drive or read because my vision was jumping around so much. I had no idea my headaches were linked to gluten so losing them was a very pleasant surprise. :)

Hang in there. I'm sure it will continue to improve for you too.

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Thank you everyone - it is definitely uplifting to hear such positive outcomes!! I'd never wish this on ANYONE, but it is really nice to not feel alone.

The acne has been horrific, mainly because it is of the extremely large and scarring cystic variety that actually made it too painful to sleep some nights! *fingers crossed there isn't much left of that!*

I forgot to add that during the strange 'missed period' time I had INTENSE night sweats. Normally, I get 'sweaty' a day or two before my period, but this time I was waking up soaked for weeks on end. I'm not even 30 and I was almost sure I had suddenly hit menopause.. cue panic attack!

That has died down thus far and I'm hoping that continues (I'm sure if any of you have experience that.. the soaking sweats are a bit awkward ...nevermind gross, cold, dehydrating etc.)

ravenwoodglass - I didn't even think of checking my personal care products - I will DEFINITELY be super sleuth this afternoon and throw out any offending shampoos/creams etc.

Also, thank you Mushroom and Nvsmom - You definitely put my mind at ease today. This gluten stuff sure is crazy.

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Hi everyone,

I was diagnosed as being 'gluten sensitive' (whatever that means) about 5 months ago when a doctor finally realized my 'malabsorption' of magnesium and other vitamins was causing my life long (23 years) migraine disorder. After months of taking a 3x the regular dose of vitamins just to stay alive - a doc finally made the gluten connection. Now I can stop spending all my money on vitamins!

Anyways, I started a strict gluten-free diet almost a month ago, and after an initial 2 week period in which I felt INCREDIBLE - I feel like I'm hitting some serious detox symptoms.

I missed a period completely (has never happened before, and it's back now - not pregnant), I broke out in RIDICULOUS acne on my face, back and chest (I've always had mild acne.. but it now worse than it has EVER been) and I've been ridiculously hungry and cranky. I ate more in two weeks than I ever had in my LIFE.

I feel like the symptoms are starting to let up a bit now - but they hit their real peek about 1.5 months into being gluten free. My period is back, and most of the acne is starting to scab over.. but man I wanted to hide underground things got so bad..

So, this is plea in hopes that my experience isn't totally abnormal - perhaps there is some light at the end of this tunnel?? is this going to get better :(?

Any advice or experience would be appreciated. THANK YOU ALL SO MUCH.

Reading this forum has been a lifesaver for me overall.

**also, since going gluten-free and being able to slightly lower the vitamin dose - I am still migraine free! So that is one good thing. (and by migraine disorder, I mean it was so bad I was considered disabled until this year.. A MIRACLE)

A lot of us find we have other sensitivities after clearing gluten from our systems. I suggest getting a little notebook and writing down everything you eat. Note any symptoms you experience. Many food sensitivities have delayed symptoms and keeping the log makes it easier to put the pieces of the puzzle together.

I also advise taking probiotics, and eating a "whole foods" diet. In other words, eat unprosessed meats, veggies, fruits, nuts, and eggs. Buy organic produce if you can..especially while you're healing.

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Hi everyone,

I was diagnosed as being 'gluten sensitive' (whatever that means) about 5 months ago when a doctor finally realized my 'malabsorption' of magnesium and other vitamins was causing my life long (23 years) migraine disorder. After months of taking a 3x the regular dose of vitamins just to stay alive - a doc finally made the gluten connection. Now I can stop spending all my money on vitamins!

Anyways, I started a strict gluten-free diet almost a month ago, and after an initial 2 week period in which I felt INCREDIBLE - I feel like I'm hitting some serious detox symptoms.

I missed a period completely (has never happened before, and it's back now - not pregnant), I broke out in RIDICULOUS acne on my face, back and chest (I've always had mild acne.. but it now worse than it has EVER been) and I've been ridiculously hungry and cranky. I ate more in two weeks than I ever had in my LIFE.

I feel like the symptoms are starting to let up a bit now - but they hit their real peek about 1.5 months into being gluten free. My period is back, and most of the acne is starting to scab over.. but man I wanted to hide underground things got so bad..

So, this is plea in hopes that my experience isn't totally abnormal - perhaps there is some light at the end of this tunnel?? is this going to get better :(?

Any advice or experience would be appreciated. THANK YOU ALL SO MUCH.

Reading this forum has been a lifesaver for me overall.

**also, since going gluten-free and being able to slightly lower the vitamin dose - I am still migraine free! So that is one good thing. (and by migraine disorder, I mean it was so bad I was considered disabled until this year.. A MIRACLE)

Hi!

After reading your post, I was doing a little researching about your painful acne. I've been dealing w eczema, and I don't really understand why....really hoping it will go away :/. Anyway, you may have already figured this out, but do you think the acne really could be "Dermitis Herpetiformis"? Sounds like its pretty painful :(

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Hi!

After reading your post, I was doing a little researching about your painful acne. I've been dealing w eczema, and I don't really understand why....really hoping it will go away :/. Anyway, you may have already figured this out, but do you think the acne really could be "Dermitis Herpetiformis"? Sounds like its pretty painful :(

I really hope your eczema goes away too.. I used to have that CONSTANTLY (and in weird places, sides of my arms, jaw line, stomach..??!) I just started researching Dermititis Herpetiformis, and I think it's possibly what I'm dealing with.. right now some of the spots look a bit too cystic/nodular so I think a lot of it is still acne.. but who knows! maybe it's an awful combination of both at this point.

It's bad enough today (face, neck, chest, back, arms) to keep me in the house.. since my mother even said .. WOAH DO YOU HAVE MEASLES OR SOMETHING?!?!

*sigh* keeping fingers crossed that this isn't some kind of new normal. Good luck with your eczema. I found the really thick 'Eucerin Original Creme' helped keep mine in some kind of manageable state.

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Wow... I'm sooo sorry to hear that!!! You may have already done this, but have you done a serious change in your diet? I mean, like more than just stopping the gluten (AND soy... It's THE BIGGEST contaminator! Seriously.)...? I just finished the Clean Program. Seriously- it's amazing. Go to thecleanprogram.com, and read about it all. I did not buy any of the products they sell. You can do it all w your own products (which I can tell you about). The program has you eat specific foods, and avoid all of the allergen producing foods. It allows your body/system to reset, and then detox. Like some of the others have said, it's a way to find out what other things you may be reacting too. Again- you may already know all of this, or have tried an elimination diet, etc. Just thought I'd mention this one, along w the soy issue. Also- are you taking an antihistamine of any sort? I had full body hives for the past year (prior to finding out I had Celiac). A specialist I saw told me it was perfectly safe to load up on antihistamines to "retrain my body to stop producing histamine". So, I took Allegra 180 3-4 times a day. It really helped them to stop. Have you seen an allergy/asthma specialize? He/she might be able to tell you more. I will want to help you! I called myself Quasimodo because I was so deformed that I couldn't leave the house either :/.

I wanted to know- what is "tonne", that you said you ate for 2 months?

I went through a lot of that too, including the acne. I ate a tonne for about 2 months, and I lost 10 lbs doing it, and then my appetite dropped way down. I'm now not nearly as hungry as i was before going gluten-free.

It really is great to lose the migraines isn't it! Mine weren't as bad as yours but I had days where turning your eyes hurt, and when it became hard to drive or read because my vision was jumping around so much. I had no idea my headaches were linked to gluten so losing them was a very pleasant surprise. :)

Hang in there. I'm sure it will continue to improve for you too.

I really hope your eczema goes away too.. I used to have that CONSTANTLY (and in weird places, sides of my arms, jaw line, stomach..??!) I just started researching Dermititis Herpetiformis, and I think it's possibly what I'm dealing with.. right now some of the spots look a bit too cystic/nodular so I think a lot of it is still acne.. but who knows! maybe it's an awful combination of both at this point.

It's bad enough today (face, neck, chest, back, arms) to keep me in the house.. since my mother even said .. WOAH DO YOU HAVE MEASLES OR SOMETHING?!?!

*sigh* keeping fingers crossed that this isn't some kind of new normal. Good luck with your eczema. I found the really thick 'Eucerin Original Creme' helped keep mine in some kind of manageable state.

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Wow... I'm sooo sorry to hear that!!! You may have already done this, but have you done a serious change in your diet? I mean, like more than just stopping the gluten (AND soy... It's THE BIGGEST contaminator! Seriously.)...? I just finished the Clean Program. Seriously- it's amazing. Go to thecleanprogram.com, and read about it all. I did not buy any of the products they sell. You can do it all w your own products (which I can tell you about). The program has you eat specific foods, and avoid all of the allergen producing foods. It allows your body/system to reset, and then detox. Like some of the others have said, it's a way to find out what other things you may be reacting too. Again- you may already know all of this, or have tried an elimination diet, etc. Just thought I'd mention this one, along w the soy issue. Also- are you taking an antihistamine of any sort? I had full body hives for the past year (prior to finding out I had Celiac). A specialist I saw told me it was perfectly safe to load up on antihistamines to "retrain my body to stop producing histamine". So, I took Allegra 180 3-4 times a day. It really helped them to stop. Have you seen an allergy/asthma specialize? He/she might be able to tell you more. I will want to help you! I called myself Quasimodo because I was so deformed that I couldn't leave the house either :/.

I wanted to know- what is "tonne", that you said you ate for 2 months?

I've definitely done a serious diet change in the last two months.. before I cut out gluten - I pretty much only ate gluten! I've always been underweight, but I am(was) a carb-oholic. I think I ate more whole wheat pasta, bread, crackers.. etc. than anyone I know!

I've never been able to eat soy (estrogen sensitive) so I pretty much avoid it all together anyways. However, I'm definitely going to check out the clean program right now, I'm having trouble figuring out what to eat these days so that will definitely help!

To clarify - the 'tonne' that I ate in the last few weeks wasn't 'great'.. mainly rice, beans (my mother is on 'the rice diet' so these things are always available and what I usually eat regardless. I definitely wasn't eating enough vegetables/fruit though.

Thank you for the antihistamine advice! That also sounds like an excellent idea - I'll try one out for a while and see if it helps at all. Unfortunately there aren't any allergy specialists in my area and the naturopath is currently unaffordable, but I'm looking to move soon anyways and hopefully can get in contact with someone who can help figure this all out! Until then perhaps the 'clean' diet will reveal some more intolerances/allergies and help me get whatever this is out of my system. :D!

So far the crazy outbreak of whatever is still going strong :/ guh. *fingers crossed*

Thank you so much for all of your recommendations!!!

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*UPDATE* 3-4 Months later.

Hi Everyone, I just wanted to update this post with some results.

I wrote in December regarding a SEVERE detox/post gluten free I was experiencing that was absolutely miserable.  HOWEVER, I remained strictly gluten-free (100% - I'm really REALLY careful) and I can happily say now that after 3-4 months, my skin and health are better than they have ever been.

My skin is CLEAR (okay, not perfect, whose is?) but compared to the cystic-acne nightmare that covered my back, arms, face, neck, chest, etc... I now only have small breakouts on my face. Something I consider 'normal' so I no longer feel like hiding in my basement.

I also have been able to start weening myself off more of the supplements I usually desperately needed. I was constantly depleted of magnesium and vitamin B -- and now I seem to be retaining it.    As a bonus - my hair is starting to grow back!!!  After surgery, other illness, etc.  my hair had thinned dramatically and I gave up thinking it would come back..  The only downside is the hair thats coming back - is grey haha.  I'm in my early twenties so that's thrilling, but hey! it's hair! :D

I hope this post helps others when they are deciding 'is all this gluten-free hasse worth it? I feel worse!' - there IS a light at the end of the tunnel. 

Goodluck to all of you, and best wishes for good health!

 

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That is fantastic news :)

My skin has cleared since gluten-free in September, isn't it great?

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get your copper level checked, a def can contribute to loss of hair color.

*UPDATE* 3-4 Months later.

Hi Everyone, I just wanted to update this post with some results.

I wrote in December regarding a SEVERE detox/post gluten free I was experiencing that was absolutely miserable.  HOWEVER, I remained strictly gluten-free (100% - I'm really REALLY careful) and I can happily say now that after 3-4 months, my skin and health are better than they have ever been.

My skin is CLEAR (okay, not perfect, whose is?) but compared to the cystic-acne nightmare that covered my back, arms, face, neck, chest, etc... I now only have small breakouts on my face. Something I consider 'normal' so I no longer feel like hiding in my basement.

I also have been able to start weening myself off more of the supplements I usually desperately needed. I was constantly depleted of magnesium and vitamin B -- and now I seem to be retaining it.    As a bonus - my hair is starting to grow back!!!  After surgery, other illness, etc.  my hair had thinned dramatically and I gave up thinking it would come back..  The only downside is the hair thats coming back - is grey haha.  I'm in my early twenties so that's thrilling, but hey! it's hair! :D

I hope this post helps others when they are deciding 'is all this gluten-free hasse worth it? I feel worse!' - there IS a light at the end of the tunnel. 

Goodluck to all of you, and best wishes for good health!

 

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    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
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    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
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    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
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    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
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    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
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    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764