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SandraLAVixen

Why I Still Eat Bread...

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Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

I finally think I figured out why; originally, I thought it was because I absolutely had to figure out why breads were causing this ridiculous reaction despite the fact that every allergy test and biopsy comes back NEGATIVE for Celiacs or any allergy to wheat or gluten.

I have a feeling the real reason is that I'm slowly starving to death. I lost nearly 40 lbs (unintentionally) since this all started, this is on top of the 50 lbs I lost several years back. Now I am absolutely drained of energy, starving, and hungry all the time.

So I want to eat foods that give me energy and make me feel satiated... and breads do that. But when I do eat bread I suffer excruciating pain for 5-8 hours and then pass out, waking up the next day even more exhausted than ever.

I feel like I have no energy and I'm slowly dying of starvation, I just don't know what to do and I feel like my mom and my doctors don't care and are letting me die slowly and painfully.

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....

So you willingly put yourself through that hell just to have that feeling of satisfaction?

You realize a wheat intolerence will not show up on a test? It is only found via an elimination diet.

sorry i just cannot understand that.

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Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

I finally think I figured out why; originally, I thought it was because I absolutely had to figure out why breads were causing this ridiculous reaction despite the fact that every allergy test and biopsy comes back NEGATIVE for Celiacs or any allergy to wheat or gluten.

I have a feeling the real reason is that I'm slowly starving to death. I lost nearly 40 lbs (unintentionally) since this all started, this is on top of the 50 lbs I lost several years back. Now I am absolutely drained of energy, starving, and hungry all the time.

So I want to eat foods that give me energy and make me feel satiated... and breads do that. But when I do eat bread I suffer excruciating pain for 5-8 hours and then pass out, waking up the next day even more exhausted than ever.

I feel like I have no energy and I'm slowly dying of starvation, I just don't know what to do and I feel like my mom and my doctors don't care and are letting me die slowly and painfully.

So....pain for 5-8 hours & then passing out is the way to eat more calories? You know that's not true. If you can't eat for 8 hours plus the "passed out" time, you aren't eating much. Of course you are dying of starvation, you are eating one thing that makes you sick and then not eating for a day.

Sounds like you don't eliminate the bread because you don't want to eat? Do you have an eating disorder? Want to kill yourself? things to consider....

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I think you do know what to do, you are just having a hard time doing it. Has nobody talked to you about non-celiac gluten intolerance? This is where you cannot tolerate gluten, but you flunk all the celiac tests. It is only recently that the medical community and the researchers, including the "God" of celiac, Dr. Alessio Fasano, have recognized that this condition exists. It apparently does not cause the same intestinal damage as celiac disease, but can have equally debilitating effects on one's life.

I would suggest you need to cut the bread pronto, and start eating wholesome whole foods, meats, veggies, fruits, nuts, seeds (and some rice) and regain your life. :)

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I have been eating other foods, but at times I feel like I eat so much until I'm bloated but I still feel like I'm starving.

I'm just not used to not eating bread since I have eaten it my whole life and then this suddenly happens one day after Christmas.

Every test I've had says I'm not allergic to wheat or gluten, I can understand if I'm born with an intolerance to gluten, but this is something that just happens out of the blue one day.

PS I don't do this because I enjoy the pain or want to loose any more weight, I'm just starving and that's a hard instinct for me to ignore.

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Being allergic to something and being intolerant to something are two different things. If it happened 'out of the blue' one day after Christmas, maybe you have reached your tolerance level to gluten/wheat? Have you tried eating gluten/wheat free bread or pasta to see if you can eat that? There are lots of other food choices you could have without wheat, to build yourself up. If you have lost so much weight and being as ill as you say, you need to see a new doctor without delay to get to the bottom of why you are so ill.

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Listen, I did it for years before I knew what celiac was.

I had no energy and it helped, for an hour or two.

Now I know that

1 I wasn't getting nutrients because my guts were such a mess and couldn't absorb the good stuff

2 there is some pretty darn addictive stuff in there.

You will need some medical help.

The good news is that the addictive stuff passes pretty quickly once you are off the gluten, and your guts will start to heal.

Take advice from the folks here on how to do this.

For me, I beat myself up for not controlling it. Now I know with the info here it can be done.

Consider starting today

Thinking of you

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I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

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Sometimes there is no definative medical answers. You obviously have a severe reaction and have a need to be gluten free. When someone has a intolerance it won't show up on any tests. Elimination and your body reaction is the best measure.

My oldest son who is now 11.5 years old is gluten free and is not diagnosed with celiac. He has non celiac gluten intolerance. He has been blood tested annually since 2008 after my diagnosis, and every time his tests are a resounding negative. He has suffered constipation his entire life and was small for his age. Last year his symptoms got worse with daily abdominal pain/bloating/gas and nausea. This to me is not normal. Took him for the celiac blood tests again and a scope just in case he was a seronegative celiac. His scope/biopsy was normal also. I decided that it was worth a shot to put him gluten free because of his symptoms and his family history of celiac (mom and younger brother). Within 1.5 months all his symptoms resolved, he gained 6 pounds and his color was much better. He has also grown 4" in the last 18 months too. We did decide to challange him after 3 months and he did have symptoms. He decided for himself that he wanted to stay gluten free because he felt so much better. I thought that was a pretty big decision for a 10 year old to make. It's been a little over a year now and he his healthy and happy.

I don't know how old you are but do yourself a favor and go gluten free. You may never get any answers from doctors as to why you suddenly have this problem but you do. I hope you have the strength to do it so you can live your life the way you deserve..HEALTHY!

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Much like Roda's son, nothing showed up in my tests. But it's still a fact I cannot eat gluten or else I will have reactions to it. If that's the same to you, you shouldn't need any tests to stay away.

A lot of other people here had negative to their tests too. Forgive me if I sound harsh here, but I read it as if though you lack of diagnosis was sort of an excuse to eat gluten even though you feel bad eating it...

It is strongly inforced here to have a diagnosis before going gluten free, but like Roda already said, intolerance won't show up in tests. If there's really nowhere to go, I think you should return to a gluten-free diet. It might take some time to work, but it has before, and will again.

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I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

Some of us will never show up positive on tests. I am one of them and was close to death by the time I was diagnosed. You have done the best 'test' there is which is dropping gluten and then challenging. You are clearly reacting so go with what your body is telling you. I hope you will listen to your body. Read as much as you can here and ask any other questions needed.

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Sandra,

A lot of us were bread and pasta fiends. I was a baker and cake decorator. I loved baking for people. I rarely ate my own cakes, as they made my stomach hurt. (Hmm, I wonder why?) My favorite breads to make were banana nut and dill onion. I loved it when my home reeked of sugar and flour from the cakes.

When my dad suggested that my migraines might be connected to gluten, I gave it up. Cold turkey. The possibility that there might be even some relief from the incredible daily pain was enough to make me stop eating gluten. I had no idea that so much of what I had been feeling would be affected by dropping it. I had been feeling like I was slowly dying with extreme fatigue and various pains. Instead of genuine hunger, I felt a gnawing pain in my belly. Within days I started to feel better, and a matter of weeks later I felt better than I had in ages with increasing energy. My stomach actually started to rumble when hungery instead of hurting, and I didn't get lightheaded anymore.

Too bad I didn't know about testing beforehand. When I did inquire about testing, I was blown off and couldn't even get an appointment to see a doctor for at least another two weeks. I had been gluten-free for a number of weeks already. I ordered a Biocard test to see if I could test myself, and I tried going back to eating gluten so I could be tested. I didn't make it through one meal. I had a violent reaction. That was my answer. Of course I tested negative on the Biocard test; I had already been free for too long. Who cares. I understood what my body was telling me. Screw the tests.

I mourned the loss of my breads and pastas and cakes and cookies. I wondered what I would eat that would satisfy me. But I took it as a challenge to get creative in the kitchen and try new things. I've tweaked my diet over the last four years, discovered more intolerances, and am in a happy place. I know what fuels me well, and I know what makes my body happy. It's a far far cry from how I used to eat.

Give up the stuff that hurts you, and play with your food! Sure it will take some adjustment time, but it will get better.

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I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

I think you need to re-read the responses to your post. NON-CELIAC GLTUEN INTOLERANCE is the cause of your symptoms. There are NO MEDICAL tests that can diagnose this - the only test is completely removing all gluten. You need to remove ALL gluten - not just breads. It is tough to remove all sources, but once you do you will feel better, not necessarily in a few days - it can take months.

You have already identified that your body can't tolerate gluten. Accept it and start improving your health.

This site has plenty of information to help with the transition along with lots of folks ready to answer questions and support you, but we can not help if you refuse to hear what needs to be done. Your choice - I hope you decide to start healing.

Good Luck to you.

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Very few of us started out with having a problem with gluten. We all loved bread and pasta, with a few exceptions. But when something is killing you, you stop doing it.

You apparently have a gluten intolerance. The only test for that is the one your body does for you. When you eat it, you get sick. Perios.

There are thousands of delicious foods available besides gluteny breads. And gluten free breads and muffins and pastas can be every bit as delicious as gluten-filled ones. (But most of the store bought ones taste like dirt. Save your $ and learn to bake)

Time to stop making excuses unless your plan is to actually starve to death, because it sounds like that is exactly what will happen if you continue the path you are on.

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Try this flour: http://www.bobsredmill.com/gluten-free-all_purpose-baking-flour.html?&cat=5

And this recipe: http://www.bobsredmill.com/recipes.php?recipe=7249

This isn't the greatest bread recipe out there, but it's one of the easiest, and it tastes similar to regular bread. Gluten free doesn't have to be complicated, expensive, or tasteless.

You have to understand that gluten is probably the underlying issue here, and you'll never get better until you cut out the cause of your illness...for good! You need to find substitutes for bread, or you'll continue to get sicker and sicker. Eating gluten is no longer a choice for you, it's a potential death sentence.

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I'm not 100% sure if it's wheat flour or gluten, I know that I can eat unprocessed wheat like cereals without any problems.

I also need to figure out if it's the "bleaching agents" in enriched wheat flour that is causing me the problems because I've known for quite some time that I am allergic to bleach.

What if there is some third factor that is making my system react to bread and how come my endoscopy images did not show any damage to my intestines and I don't have any constipation or diarea?

Another issue is that I was told that gluten intolerance is primarily a Caucasian trait, is this true? I'm mainly a Russian/Arctic/Siberian native and Asian mix (or at least that is what my mom insists).

Please understand that I'm not trying to be difficult or challenge(y), I'm just trying to figure this out as its so weird. Thanks to everyone who has been patient with me and helping me with ideas. I really appreciate it. :)

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I am not 100% certain you have a problem with gluten either. What you presented was you have unexplained weight loss, abdominal pain after eating bread and donuts, extreme fatigue and feeling like you are not getting energy from your food.

Did you have a full celiac blood panel? Did your gastroenterologist take enough samples from the small intestine? Do you have a copy of the endoscopic report - often there will be other indications - inflammation, etc. which the doctor will note on the report but will not always mention in his follow up with you.

What I am saying is you have enough symptoms and are connecting them to bread so it makes sense to completely eliminate all gluten from your diet for 3-6 months. If you improve and believe it is some other substance besides gluten, trial items without the suspect ingredients - but give your body the three - six months gluten-free - this is the ONLY test if you are gluten intolerant.

It's your choice - removing gluten could be the answer. If you feel like you are starving to death, isn't worth a trial to see if this is the reason? I guess I'm not understanding - you say bread is the only food that you feel gives you energy, but it also causes extreme abdominal pain and you sleep for hours afterward.

It is not true that Celiac Disease is only found in Caucasians. There was a study that indicates it is more prevalent - closer to 1 in 100 for Caucasians and closer to 1 in 140 in other races. Again these numbers are for Celiac Disease - I know of no difference between races for Non-Celiac Gluten Intolerance.

I do hope you find a solution that will help you lead a healthy life.

Good Luck to you.

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May I suggest that if you think you do not have a gluten problem, but rather a bread problem, that you eat all gluten except bread and see what happens?? :) Load up on pasta and cookies and cake. That test should be fairly definitive on whether bread alone is causing your issues. If so, eliminate the bread; if not, then we can help you take it from there.

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Yes, I have both the endoscopy and pillcam reports, both report normal small bowel and nothing out of the ordinary.

I had the Celiac profile (bloodwork) and it was normal, biopsies where only positive for H.Pylori.

I avoided gluten from Feb, Mar, Apr, May of this year, during that time I still felt weak and crampy, I only missed by period in Feb but things went back to normal afterwards.

By "starving" I mean that when I eat non-bread foods, I still feel hungry afterwards but my stomach feels so nauseous that it does not want any more food.

I'm not 100% sure if it's gluten but I do know that cereals do not trigger anything, I'm still trying rice flour or corn flour products to see what happens.

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Hi Sandra

Yes, it really does sound like you have an intolerance to at least wheat, if not gluten entirely.

Either way, it's probably best for you to cut out gluten completely for at least 6 months (as suggested) and see if you start doing better. It takes a lot of patience. You won't be 100% overnight. Even if you don't have the damage caused by Celiac disease, your gut still needs to heal and get used to you feeding it different things.

I also recommend doing lots of reading up on the gluten-free diet, Gluten Intolerance, etc etc.

I know its difficult to accept having a condition when there is no medical test to confirm it, but when it comes to food intolerances, you have to listen to your body. If bread makes you sick, don't eat it. It's not worth it. Your body will adjust to not having it if you give it time. Also, even though other wheat products like cereals and such aren't causing a reaction, it doesn't mean they might not be contributing to the problem. For example, if I unknowingly eat gluten-contaminated food, I might not feel any reaction until a couple days later after the damage is done.

I too remember still feeling hungry after non-gluten meals for a while, but I wasn't in pain! So eventually my body healed and adjusted to the new foods I was eating.

So, be patient and be strong. It's a big life change to make, but it's worth it.

Take care!

Peg

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Sandra - a couple things stood out when I read your orginal post a couple of days ago and I keep thinking about you and your situation. Over the years I have learned to listen to my intuition and this is one of those times. I think it is obvious that you and gluten do not get along, other people have suggested reasons why and even helped put a name to it but it boils down to simple cause and effect. You eat gluten, you have terrible pain you pass out.

Speaking from years of experience what I see is a full blown eating disorder that you are disguising. You mentioned a 40 lb unitentional weight loss, if you know that gluten will cause the effect that it does then that is intentional weight loss, it is the same as throwing up or abusing laxatives. And yes you are starving your own body by this repeated damaging behavior.

I think the most telling,and saddest thing you said was about your mom and doctor not caring. It is a cry for help and your gluten intolerence is the vehicle. Though my story is different I see myself in your words. I have spent too much time in hospitals for eating disorders (and I have been healthy for a long time) and eating disorders can be very sneaky.

Sounds to me like you have a lot on your plate. Maybe you can stop looking for an answer and agree to be gluten free while you use that energy to look for under lying issues. I wish you luck and a shoulder to lean on. Periwink <3

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Thanks Periwink, I do want to mention that I did have ED when I was around 12 (binge without purge) and it was shortly after a random sexual assult. That was the huge weight gain in my early teens that I now lost all the weight from.

I feel so strange being so heavy and big and now being so thin and starving, I always thought that it was safe for me to eat anything since no one in my family has ever had any food allergies or ED. I really hope this is not another ED, I really hope not because I don't know what to do.

I'm not really sure what my body is telling me, when I'm in pain, I always say to my stomach "okay, okay, I'll do whatever you want, just tell me what to do and stop the pain" and I don't know if it wants more food or no food.

All my GI doctors keep telling me that there is no damage from the endoscopy and pillcam images, they even showed it to me next to images of a bowel with Celiac disease and they look totally different.

My mom says this is all in my head, and now I feel like I'm going crazy or something. My mom also won't accept that wheat or gluten is the cause.

Anyways, I plan to go to a special Celiac-friendly bakery this weekend and get a bunch of gluten free breads to try out.

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Anyways, I plan to go to a special Celiac-friendly bakery this weekend and get a bunch of gluten free breads to try out.

That is a great place to start. :) Pay attention to what flours they use in the breads and which tastes you like and dislike. There are so many different flours used in gluten free baking and you may not like all of them. And be prepared that the bread is not going to be like gluten bread. Perhaps you could start making a grilled cheese or ham and cheese sandwich. Some breads if you find a good one can be eaten with just butter but most taste better toasted. You could buy a baguette and make crostini (nom, nom - wish I could have tomato :( ). Be creative in making your bread taste good because it takes time to adjust to the different flavors. And be prepared that you may want to feed the birds and squirrels some of it :D DO NOT (general consensus here, although some like it) buy Ener-G rice bread!!!! :lol:

Edited to add: With the holidays coming up, some say Ener-G makes good stuffing. :D

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Absolutely - a great start.

If you don't have luck at a bakery, you should be able to find Udi's breads and muffins at a store near you. Mushroom is right - some gluten-free bread tastes like drywall. Toasted or grilled cheese Udi's is probably the best easy to find solution.

Also want to add -- gluten is often very sneaky in the way it effects us. You can have very serious symptoms when gluten intolerant - not just with celiac. These symptoms can include neurological and behavioral issues - many of us that went undiagnosed or misdiagnosed while being told we were stressed, depressed or that are symptoms were all in our head. You hear that enough and you can't help but think maybe it is all in my head. Turns out some symptoms were in our heads - but the CAUSE was a very real problem with gluten screwing up our digestive systems.

Hang in there - keep trying to find answers!

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perhaps your abuser is a family member, and you saw him/her at christmas? Good luck

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    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. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    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.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    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. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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