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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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finlayson

Feeling Worse On gluten-free Diet

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I am coming up to the 2 week mark on my glute-free diet. I have been extremely careful about accidentally consuming gluten. I am, however, feeling considerably worse than I ever did while consuming gluten. I did not really have any major symptoms prior to diagnosis but now my stomach hurts all the time, is bloated and I feel SO TIRED. Has anyone else experienced this, and how long does it last? I would have thought two weeks would have been long enough for my body to get used to a new diet but maybe not.

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I am coming up to the 2 week mark on my glute-free diet. I have been extremely careful about accidentally consuming gluten. I am, however, feeling considerably worse than I ever did while consuming gluten. I did not really have any major symptoms prior to diagnosis but now my stomach hurts all the time, is bloated and I feel SO TIRED. Has anyone else experienced this, and how long does it last? I would have thought two weeks would have been long enough for my body to get used to a new diet but maybe not.

Hang in there. It took almost 2 months for me to really feel better. I thought I was being careful in the beginning, but realized I wasn't. For instance, I was using an older bottle of Sam's Club ibuprophen which contained gluten in the starch. The new bottle I had did not. I was taking a generic lactaid, it had gluten. In the beginning the learning curve is so steep. Even if you are positive you are not getting gluten, it still may take more time for you to start to heal, especially if you have been misdiagnosed for awhile. You may also need to eliminate dairy for awhile if you haven't. The tips of the vili is where the lactose is broken down, if yours are damaged you maybe lactose intolerant for awhile. Keep us posted {{Hugs}}

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Thanks for the support. Maybe it's stress that is affecting me - my expectations at the beginning were that I would suddenly feel on top of the world, and, of course, that did not happen. Indigestion, tiredness and stomach pain was not what I was expecting! In fact, the more I think about it, stress probably does play a huge part here - I am the mother of three children and the impact of this diet has been at times quite overwhelming. Sorry for the vent, but thanks for listening.

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Vent away! We all need to do it sometimes. When you vent here, we understand. I would also ask about your dairy consumption. You may need to let it go for awhile.

The advice to check for hidden gluten is a good one. It can really hide, you know? Do you still use flour in your house? It could be getting to you if you breathe it or touch it. Supplements can have hidden gluten. It's hard to know but you could start eliminating things you use one at a time and see if you find any relief. Hope you feel better soon!

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Hang in there. I'm having the same problem. I've been gluten free going on 5 weeks and I will feel horrible for a few days then have one good day, then back to horrible. Definetly be VERY careful and check EVERY label. I am still missing things as little as they are they really do make a huge difference. Its going to take some time, so try to be patient and its going to get better.

Alot of my symptoms now feel worse than when i was eating gluten and its so discouraging. I am trying to relax and remind myself that this is going to get better and just to wait. :-)

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My 2 week mark was horrible. I felt terrible. I could barely do anything as I was extremely exhausted and having alot of stomach pains that I hadnt had before. I am at the 5 week mark and feel wonderful. It is amazing how much better I feel than I have in years. Hang in there!!

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Hi,

Here are a couple of articles to read that may explain what you're going through.

.

They say it always gets worse before it gets better, these will be a real eye opener!

.

Adverse Reactions to starting a Gluten Free Diet

.

Opiate Withdrawal from Gluten and Casein

.

Best Regards,

David

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Thanks so much to everyone who responded. I was beginning to think Iw as going crazy. I'm just beginning week three gluten-free and some of the symptoms have subsided. Brain fog and tiredness are still with me, but I'm putting those down to stress and having to deal with the complications of this new diet. Thanks for all the support.

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Thanks very much for posting that link. I've printed it out to take with me to my doctor's appt. on Tuesday. I found this site by googling almost the exact title of this thread, in a final act of desperation. I'm at exactly 6 weeks since I started the GFD (for the third time in 10 years), and after reading so often how people are supposed to feel so much better after 2 weeks, I was ready to give it up tonight for the last time and write myself off as a lost cause, but the article linked above makes some sense.

I don't know how well it will go over with the doctor, but I was wondering if there were any others out there who did a tapering off of gluten rather than going cold turkey. I did a search, but the only results were for tapering off meds, not gluten. I've been told by my GI doc that I have the worst case he's ever seen in nearly 20 years of practice (which I take with a grain of salt), and when he pulled up the CT scan of my abdomen, the lining of my jejunem was 15x normal size (he measured it with the drawing tool in the viewing program during a recent appointment).

The reason for starting the GFD immediately was that they saw a few abnormalities on the CT which could be cancerous, but there was so much inflammation the radiologist couldn't be sure. They've now tested the lymphocytes in the biopsies taken during my endoscopy + colonoscopy, and have determined I have enough variety that they're 99% sure there is nothing cancerous, but they want to reserve that 1% until the inflammation comes down enough for a second look. I thought it was reasonable enough to try the GFD again and do it cold turkey, but I'm at the point where if I have to live like this for the rest of my life, I'll take the lymphoma risk and drop the diet entirely. It's that bad. I lasted only 2 weeks on previous attempts.

The doctor put me on Entocort at Week 3, which I got a temporary lift from for about a week, but I've been seriously crashing and burning this weekend. Morbid depression, abdominal bloating, severe constipation that leaves rectal burning for hours, pitting edema, and barely able to function on nearly any level (except posting to the internet, apparently!) are just the beginning of the long list of symptoms that have appeared in the past six weeks. Needless to say, I'm questioning whether I'm better off going back on a semi-regular diet and not subjecting my body to this, which can't possibly be good for it. Perhaps going partial gluten-free for a while to taper down would be better.

Anyway, any thoughts on redoing this by tapering, or sharing personal experiences if you didn't go cold turkey from gluten would be appreciated. The doctor was so insistent on strict adherence to a GFD being immediately necessary, and nothing out there I could find that there was any other way to do this, caused me to go with it his way.

And hi there everyone, I don't usually enter a forum with such doom and gloom, it all just started spilling out! :)

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I felt the same way once I went gluten free. I was expecting to feel better within weeks. But at times I also felt that I was getting worse in some ways.

Once I hit the 6 month mark, the changes really started to show, my energy came back, I didn't have brain fog, and I almost always felt good.

Hang in there, and stay as gluten free as possible. The longer you are on the diet the easier it will be notice even if you have mistakingly had a trace of gluten in your diet. You start to become so good at it.

Good Luck

Krista

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Going gluten-free is quite a change in diet for most people. I suggest adding oatmeal to your daily routine, Oatmeal has lots of fiber and can be help to keep things moving during the adjustment. I like oatmeal with a little peanut butter, orange marmalade, and fruit bits or nuts added. It makes a quick easy breafast. You might be well off to start taking some vitamin D and B vitamins, along with calcium if you cut out dairy for a while.

I like to make large pots of rice and veggies with chicken or beef on the weekend and then freeze most of it. It is quick and easy to microwave the rice during the week.

Some people say that you go through a period of dysbiosis after going gluten-free. The way I understand that is your intestinal flora are out of balance. It can take a while for them to get settled down again. Dysbiois may explain the gas and bloating stuff. Pro-biotics may help, and avoiding sugary foods and candy for a bit.

Anyhow, just some ideas to think about. I hope you feel better soon.

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Be really cautious about going back "off the wagon" again. It feels worse each time you try to give up gluten, and then go back again. Also in the first of the 2 links there was a statistic:

"Mortality in patients with celiac disease and their relatives: a cohort study

This study compares 1072 celiac patients with 3384 of their relatives over 25 years.

In this study patients who were most likely to maintain a strict gluten free diet died half as often as their relatives over 25 years.

Patients who blew off the diet completely and ate "normally" died twice as often as their relatives.

Patients most likely to cheat on the gluten free diet died 6 times as often as their relatives.

Why? Is continued ischemia/reperfusion injury a factor for those who are only partly compliant ?

This is worrying. I know for example, that when I "cheat", my villi get healthy enough that they are able to recognise and let my know that they don't like lactose. When I have recently cheated, the villi are too damaged to respond, and I have no symptoms of lactose intolerance. That doesn't make me think I'd be better off eating gluten though! I'm just grateful that my system has recovered enough sensitivity to notice and inform me of other problems.

Are you eating other grains? it might be best to keep your diet very very simple for now, and grains are quite hard to digest. Since going gluten-free I can tell they do me no good, because my heart starts to pound, for ages after! Horrible, but I'm glad to be given the message at all. It just tells me something is healing in there.

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Going gluten-free is quite a change in diet for most people. I suggest adding oatmeal to your daily routine, Oatmeal has lots of fiber and can be help to keep things moving during the adjustment. I like oatmeal with a little peanut butter, orange marmalade, and fruit bits or nuts added. It makes a quick easy breafast. You might be well off to start taking some vitamin D and B vitamins, along with calcium if you cut out dairy for a while.

I like to make large pots of rice and veggies with chicken or beef on the weekend and then freeze most of it. It is quick and easy to microwave the rice during the week.

Some people say that you go through a period of dysbiosis after going gluten-free. The way I understand that is your intestinal flora are out of balance. It can take a while for them to get settled down again. Dysbiois may explain the gas and bloating stuff. Pro-biotics may help, and avoiding sugary foods and candy for a bit.

Anyhow, just some ideas to think about. I hope you feel better soon.

I would say, be careful of oats intially. I carried on eating oats after going gluten-free and not getting better and it wasn't until sometime later that I realised that there is a big risk with them of cross-contamination. Unless you can find a source that is guaranteed to not be contaminated with wheat, rye or barley gluten, then I would advise giving it a miss, at least until your gut has been healed for some time.

Most oat products are produced in the same factory, or even on the same machinery as other gluten products so you have to be careful. Once I removed the oat products I was a lot better. I can have them a bit now, nearly a year later, but I don't go overboard with them. I no longer react to gluten but still prefer to avoid it for the time being.

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I would say, be careful of oats intially. I carried on eating oats after going gluten-free and not getting better and it wasn't until sometime later that I realised that there is a big risk with them of cross-contamination. Unless you can find a source that is guaranteed to not be contaminated with wheat, rye or barley gluten, then I would advise giving it a miss, at least until your gut has been healed for some time.

Most oat products are produced in the same factory, or even on the same machinery as other gluten products so you have to be careful. Once I removed the oat products I was a lot better. I can have them a bit now, nearly a year later, but I don't go overboard with them. I no longer react to gluten but still prefer to avoid it for the time being.

All good advice here. I also just found and have been in touch with the head of the Celiac organization in my state. First thing she recommended was the book, "The Gluten Connection" by Shari Lieberman. I just read it. Wow, it covers all of it and also sets up a 3 part vitamin and other supplement schedule. I have been almost 6 months with a lot of down time and some good days and still discovering gluten containing things. Hoping to see big changes for the better soon.

How do you all feel about products that the company responds, "they are gluten free, and made on a gluten free line, but can not be labeled as gluten free because they are made in a factory that also has gluten?" Do any of you trust that? "Mrs. Dash" spice company told me that. Then that makes me wonder about "Mc Cormick" spices because they say all their pure spices are gluten free, and to check the ingredients on the "mixed" spices. They did not mention if they were all made in the same factory and now I am worried about cross contamination. I eat whole foods and make my own everything, so the spices would be the questionable things?

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Oats are a tricky beast. They are OK if they are certified gluten-free but even then a certain percentage of celiacs can't tolerate them. It's generally recommended that you aviod oats until you are healed and introduce them slowly.

http://www.glutenfreeoats.com/

http://www.Lame Advertisement.com/

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I've never had a problem with any McCormick's product.

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Me either. McCormick is on my rather small list of absolutely trustworthy companies. I trust McCormick over most grocery store brands.

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I agree that oats are not for everybody. I have read that some people do have reactions to them. I think it is a small number of celiacs who react to oats, but if it is you that is what matters! So it probably is better to avoid them when starting the gluten-free diet, just in case you are one of the people who do have a reaction to them.

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In the months following my diet change, I my body went downright nuts. New and different health problems every week for a while.

It's 8 months since my diagnosis (bloodwork and biopsy), and my body is finally settling down in a lot of ways. I still have more headaches and neurological problems than pre-diagnosis, but my neurologist pointed out that my body was used to functioning in a chronic state of inflammation, and it is not uncommon to experience neurological changes with changes in inflammatory function. I still have a lot of health "quirks" but don't know if or how they relate to Celiac and the diet change.

Best of luck - hope things are getting better for you!

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Hi,

Here are a couple of articles to read that may explain what you're going through.

.

They say it always gets worse before it gets better, these will be a real eye opener!

.

Adverse Reactions to starting a Gluten Free Diet

.

Opiate Withdrawal from Gluten and Casein

.

Best Regards,

David

Thanks so much for posting these articles. It really helps me understand what is happening to my brain with the blood flow. I have been very discouraged lately as I have beee 5 months gluten free and my neurological problems are still pretty bad. I get a few good days, but mostly bad ones. I am so hoping the 6 month mark will show some good changes. Thanks again!

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I felt the same way once I went gluten free. I was expecting to feel better within weeks. But at times I also felt that I was getting worse in some ways.

Once I hit the 6 month mark, the changes really started to show, my energy came back, I didn't have brain fog, and I almost always felt good.

Hang in there, and stay as gluten free as possible. The longer you are on the diet the easier it will be notice even if you have mistakingly had a trace of gluten in your diet. You start to become so good at it.

Good Luck

Krista

Thank you for this post..it has really given me hope!!!

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In the months following my diet change, I my body went downright nuts. New and different health problems every week for a while.

It's 8 months since my diagnosis (bloodwork and biopsy), and my body is finally settling down in a lot of ways. I still have more headaches and neurological problems than pre-diagnosis, but my neurologist pointed out that my body was used to functioning in a chronic state of inflammation, and it is not uncommon to experience neurological changes with changes in inflammatory function. I still have a lot of health "quirks" but don't know if or how they relate to Celiac and the diet change.

Best of luck - hope things are getting better for you!

Thank you so much for this post.I've only been on gluten free diet 5weeks..tomorrow..my symptoms of gluten ataxia.Are worse than ever before..I was ready to quit..but I'm hanging in..now!

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Thank you so much for this post.I've only been on gluten free diet 5weeks..tomorrow..my symptoms of gluten ataxia.Are worse than ever before..I was ready to quit..but I'm hanging in..now!

You are responding to posts from 2009. I don't think either of them have been around in years. Might not get a response.

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    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com

    Jefferson Adams
    Celiac.com 04/16/2018 - A team of researchers recently set out to investigate whether alterations in the developing intestinal microbiota and immune markers precede celiac disease onset in infants with family risk for the disease.
    The research team included Marta Olivares, Alan W. Walker, Amalia Capilla, Alfonso Benítez-Páez, Francesc Palau, Julian Parkhill, Gemma Castillejo, and Yolanda Sanz. They are variously affiliated with the Microbial Ecology, Nutrition and Health Research Unit, Institute of Agrochemistry and Food Technology, National Research Council (IATA-CSIC), C/Catedrático Agustín Escardin, Paterna, Valencia, Spain; the Gut Health Group, The Rowett Institute, University of Aberdeen, Aberdeen, UK; the Genetics and Molecular Medicine Unit, Institute of Biomedicine of Valencia, National Research Council (IBV-CSIC), Valencia, Spain; the Wellcome Trust Sanger Institute, Hinxton, Cambridgeshire UK; the Hospital Universitari de Sant Joan de Reus, IISPV, URV, Tarragona, Spain; the Center for regenerative medicine, Boston university school of medicine, Boston, USA; and the Institut de Recerca Sant Joan de Déu and CIBERER, Hospital Sant Joan de Déu, Barcelona, Spain
    The team conducted a nested case-control study out as part of a larger prospective cohort study, which included healthy full-term newborns (> 200) with at least one first relative with biopsy-verified celiac disease. The present study includes 10 cases of celiac disease, along with 10 best-matched controls who did not develop the disease after 5-year follow-up.
    The team profiled fecal microbiota, as assessed by high-throughput 16S rRNA gene amplicon sequencing, along with immune parameters, at 4 and 6 months of age and related to celiac disease onset. The microbiota of infants who remained healthy showed an increase in bacterial diversity over time, especially by increases in microbiota from the Firmicutes families, those who with no increase in bacterial diversity developed celiac disease.
    Infants who subsequently developed celiac disease showed a significant reduction in sIgA levels over time, while those who remained healthy showed increases in TNF-α correlated to Bifidobacterium spp.
    Healthy children in the control group showed a greater relative abundance of Bifidobacterium longum, while children who developed celiac disease showed increased levels of Bifidobacterium breve and Enterococcus spp.
    The data from this study suggest that early changes in gut microbiota in infants with celiac disease risk could influence immune development, and thus increase risk levels for celiac disease. The team is calling for larger studies to confirm their hypothesis.
    Source:
    Microbiome. 2018; 6: 36. Published online 2018 Feb 20. doi: 10.1186/s40168-018-0415-6