0
ljgs

Is There Something Called "contamination Celiac"?

Rate this topic

Recommended Posts

A friend of a friend has a college-age daughter with celiac disease, and she says that the girl was tested for something called "contamination celiac," which is when you are sensitive to the remnants of gluten. Apparently this girl is able to eat cold cuts lifted directly off bread or pick croutons out of the salad and then consume the salad without any ill effects. She says you can test specifically for this. Her father also told me that she can eat Chinese food because she doesn't react to soy sauce. I have to admit, after he said that, I was very skeptical that this family was really doing everything they could to keep their daughter safe. I have never found anything online about a condition called "contamination celiac." My understanding is that celiac is black and white--you either have it or you don't, and if you have it then you absolutely cannot eat things that have touched bread, and you cannot eat soy sauce even though there may be just a small amount of wheat in it. Thoughts, anyone?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


This looks suspicious to me. I often hear people with Celiac say, they can have a little bit of this, or there is no problem if I just remove the croutons from the salad. If that was the case, I shouldn't worry about eating gluten at all. I have hardly any noticable reaction. However, just because I don't feel anything, doesn't mean that the damage isn't being done. People with few symptoms have to be the most careful, because it is not easy to determine when gluten has been consumed.

Doug

Share this post


Link to post
Share on other sites

There is no degrees of Celiac. Whoever fed them that bull is either trying to sell them something or her daughter lied because she doesn't want to do the diet completely. Her daughter is an adult.

Might give her a copy of this info. You canbably find something similiear on the Columbia or Mayo or Maryland websites to bombard her with.

http://www.celiacdisease.net/assets/pdf/CDCFactSheetsTreatment6.pdf

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms.

  • Upvote 2

Share this post


Link to post
Share on other sites

Lookie! More! Copy them all off. Under line or circle the important parts.

http://www.celiacdiseasecenter.columbia.edu/A_Patients/A02-FAQ.htm

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

http://www.bidmc.org/CentersandDepartments/Departments/DigestiveDiseaseCenter/CeliacCenter/FAQ/GlutenandtheGlutenFreeDiet.aspx#cheat

Can I cheat on my gluten-free diet?

Unfortunately, the answer to this question is no. Even when you are sticking to a gluten-free diet, it is impossible to eat gluten-free 100% of the time. This is because there is always some level of contamination of foods, whether it is when the food is processed, when dining out, or in your own kitchen at home. Intentional or unintentional ingestion of gluten will prevent your villi from healing well. Therefore, it is very important to follow the gluten-free diet as carefully as you can to benefit from it.

What are the consequences of not following a strict gluten-free diet?

There are serious consequences of not following a gluten-free diet when advised to do so by your physician. There will be continued changes in the lining of your intestines. These changes will lead to decreased absorption of nutrients, possibly leading to other conditions such as osteoporosis and anemia. You will also be at increased risk for gastrointestinal cancers, as well as non-Hodgkin

  • Upvote 1

Share this post


Link to post
Share on other sites

Thanks, all, for agreeing with me. When I met the father last year and he told me that she eats soy sauce, I immediately wondered what the deal was with this family. Also, the mom told me that after being diagnosed at age two they never bothered getting the kid any further bloodwork or follow-up testing. My daughter was diagnosed a year ago and we have been SO CAREFUL. Her TtG at diagnosis was 169 and now it is 2. She had tremendous intestinal damage and very few symptoms. I know from experience that if she accidentally eats gluten she does not feel it. But those biopsy pictures proved all the damage. I think this family is pretty ignorant, but of course they know better because after all their daughter has had it for 17 years and mine only one!

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


Sometimes I find that people believe things because that is what their doctor or healthcare professional tells them despite evidence to the contrary. I unfortunately see many people like this. It's sad the the medical profession is so misinformed about celiac.

I was at work this weekend and a coworker and I were talking about varrious things. I was telling her I was curious to see what my 6 year olds growth was going to be at his next yearly check up. He went gluten free 11/10 and in 2/11 he went for his 6 year check up. The NP commented that he gained considerable amount of weight..went from the 10 % to the 50%. He has continued to grow leaps and bounds and he is catching up with his 10 year old brother who is very small. We were also talking about drinking and I mentioned that I have been telling my son that beer is off limits because of gluten and it will make him sick and for various other obvious reasons. Our ED doc spoke up and asked if my son was diagnosed. I said yes he had positive blood work and that since there is usually never false positives and myself being diagnosed that he had celiac. He goes on to say that well some people think they are celiac and they aren't. For some reason that irritated me. So I went into my rant how I(and our allergist) feels that my oldest is either a seronegative celiac or gluten intolerent based on some of his symptoms and the fact he has a brother and mom with it, that IBS is a not a diagnosis(sure the bowel is irritated and something is causing it) and that I felt everyone that is given the IBS "diagnosis" should be screened for celiac. So I guess my point here is that so many healthcare professionals are undereducated about it also so that unfortunately is what they convey to their patients.

  • Upvote 1

Share this post


Link to post
Share on other sites

When I meet "celiacs" who feel like they can cheat once in a while. I immediately wonder if their Dr actually told them that and when. If I had listened to the Dr who diagnosed me(4 1/2 months ago) I would have "continued eating gluten until the symptoms got worse, and not tested my kids until they were 12 because a gluten-free diet can effect growth" Oh, and "eating rye bread because many celiacs can tolerate rye!" ?????? REALLY?!!

Thank God for the internet and this forum.

I'm not sure how you explain to them that they are wrong and they need a new Dr and that they are hurting themselves. And eating a gluten-free diet is "Too hard!" What a load of crap.

Share this post


Link to post
Share on other sites

A friend of a friend has a college-age daughter with celiac disease, and she says that the girl was tested for something called "contamination celiac," which is when you are sensitive to the remnants of gluten. Apparently this girl is able to eat cold cuts lifted directly off bread or pick croutons out of the salad and then consume the salad without any ill effects. She says you can test specifically for this. Her father also told me that she can eat Chinese food because she doesn't react to soy sauce. I have to admit, after he said that, I was very skeptical that this family was really doing everything they could to keep their daughter safe. I have never found anything online about a condition called "contamination celiac." My understanding is that celiac is black and white--you either have it or you don't, and if you have it then you absolutely cannot eat things that have touched bread, and you cannot eat soy sauce even though there may be just a small amount of wheat in it. Thoughts, anyone?

There are very different levels of sensitivity among celiacs. The "boardthink" here is that nobody with celiac can tolerate any gluten at all, but that is far more black and white than a lot of papers I've read. Challenge studies have been done and there are definitely celiacs who can tolerate small amounts of gluten without relapse. There are even celiacs who develop true immunological tolerance to gluten again, though it may not always be permanent. I have never heard the term "contamination celiac" but it is possible that she had a blood test and repeat biopsy on her slightly CC'd diet and came back normal. She is probably still below the 20-30 mg/day that this study looked at, as picking croutons out of salad or eating soy sauce is still a pretty small amount of gluten.

http://www.ncbi.nlm.nih.gov/pubmed/15191509

By the way, I'm not discounting that some folks here are bothered by amounts of gluten so low they cannot be detected. Remember that people on this board are not necessarily a representative sample of people with celiac disease.

Re: soy sauce, some naturally fermented soy sauces do test below the detection threshold of 5ppm gluten, comparable to commercial gluten-free baked goods.

http://www.soya.be/gluten-free-soy-sauce.php

Share this post


Link to post
Share on other sites

There is a brand of soy sauce, San-J Tamari, made without wheat, which is gluten free.

http://www.san-j.com/product_info.asp?id=3

I don't know exactly what brand of soy sauce PF Chang's (Chinese food chain) uses in their gluten free menu offerings, but it is something they are calling gluten free.

People vary in sensitivity. I consider myself less sensitive than some, but my symptoms are very different. Years ago I was cross contaminated inadvertently at a restaurant out of town on the first day of a conference, because the waitress, I suspect. had no idea what I was talking about, and did not seem that happy to be working there nor waiting tables (I've done restaurant work, I can usually get most of them to at least crack a smile, geez). Since I knew I was then in for a round of lack of balance and grogginess, I was not as strict as I could have been about cross- contamination subsequently the next day. "shrug" doomed if you do, and doomed if you don't. The organization putting on this was not real concerned about my lack of options, (after implying they would be on the registration process) culminating in the return trip from **** where they ripped a lot of people off on the last meal they didn't give us, before sending us to the airport having massive flight cancelations, and I've not gone back.

So yeah, in extraordinary circumstances I might be seen rinsing off lunchmeat that touched bread, and not being a model gluten intolerant. NEXT time, if there was one, I'd just rent a car and get out of there, and drive myself a few thousand miles with less hassle, after purchasing a cooler and some real groceries.

This is sort of consistent with life, in general. I can be extraordinarily careful and get nailed anyway cooking at home with a single bad ingredient which is not true to its alleged gluten-free status, which will make me the most irritable, or I can be less careful, and not get nailed eating out, when other people do. Or I can be super super super careful at a heavily researched restaurant... and get hit anyway. On the other hand, I read some stuff on another board sometimes, and I am gobsmacked at the risks some are taking with commercially prepared items or fast food or fancy coffee drinks.

Share this post


Link to post
Share on other sites

This is sort of consistent with life, in general. I can be extraordinarily careful and get nailed anyway cooking at home with a single bad ingredient which is not true to its alleged gluten-free status, which will make me the most irritable, or I can be less careful, and not get nailed eating out, when other people do. Or I can be super super super careful at a heavily researched restaurant... and get hit anyway. On the other hand, I read some stuff on another board sometimes, and I am gobsmacked at the risks some are taking with commercially prepared items or fast food or fancy coffee drinks.

OMG me too! Like you, I have times when I make mistakes and have no reaction and then I have D out of nowhere when I eat specialty gluten-free foods at home. I have to wonder whether my reactions to gluten are really that wildly variable, or if I'm sensitive to something else I haven't figured out.

Do you think all your reactions are definitely gluten? It would be a great relief to hear that I'm not alone in reacting to traces on one day and not on another.

By the way, I have also wondered about desensitization. Do we make ourselves super-sensitive by avoiding gluten too well? Sort of like allergies? There is some literature suggesting that celiacs can desensitize which is why there is ongoing research on a vaccine.

Share this post


Link to post
Share on other sites


Ads by Google:


I understand that some celiacs don't have any outward reaction to gluten--my teenage daughter does not get any of the obvious symptoms that hit some celiacs so hard, but her diagnostic biopsy last year showed enormous damage to her intestines. My concern is for people who believe they are okay with a little contamination because they don't "feel" it, when inside the damage is being done!!!

Takala, thank you for the info about soy sauce. We do use gluten-free soy sauce at home, of course, but what this friend of a friend's daughter is doing is simply eating Chinese food anywhere and everywhere without inquiring. And I'm sure that the overwhelming majority of little mom and pop Chinese joints are not bothering with gluten-free.

Share this post


Link to post
Share on other sites

I understand that some celiacs don't have any outward reaction to gluten--my teenage daughter does not get any of the obvious symptoms that hit some celiacs so hard, but her diagnostic biopsy last year showed enormous damage to her intestines. My concern is for people who believe they are okay with a little contamination because they don't "feel" it, when inside the damage is being done!!!

My 7yo was like that but after 6 months off it she's now very sensitive to it. One crumb can mean horrible affects for her for up to a week. I never would have picked up on the fact she has the disease so I'm happy that her Paediatrician was persistent with it and wanted to check her for it. It was of harm to her on the inside even if I didn't pick up on the outside symptoms which were mild at the time.

Share this post


Link to post
Share on other sites

OMG me too! Like you, I have times when I make mistakes and have no reaction and then I have D out of nowhere when I eat specialty gluten-free foods at home. I have to wonder whether my reactions to gluten are really that wildly variable, or if I'm sensitive to something else I haven't figured out.

Do you think all your reactions are definitely gluten? It would be a great relief to hear that I'm not alone in reacting to traces on one day and not on another.

By the way, I have also wondered about desensitization. Do we make ourselves super-sensitive by avoiding gluten too well? Sort of like allergies? There is some literature suggesting that celiacs can desensitize which is why there is ongoing research on a vaccine.

FWIW, I thought that I was getting glutened and could not work out why or how and it turned out to be fructose malabsorption, specifically, onion in large quantities. I was so puzzled at first, I could not understand how I was possibly being glutened at home.

I'm not sure if my reactions vary. I feel like there are times I've been lucky and should've gotten got but feel fine, and then others, whamm, did not see it coming. I have worked out that D without strong stomach aches is generally not gluten.

I think there is something in making ourselves super-sensitive by avoiding it so well, but I don't see any way around that. I've not noticed it with any other foods, so I don't think it's a bad thing (obviously, the gluten isn't good if it gives us that reaction), and trying to desensitise would seem too much like trying to build up a tolerance to poison like that guy in The Princess Bride. I like that I get such an obvious reaction because it keeps me strict. The lack of intense stomach aches (and balance issues, etc) with the fructose malabsorption makes me less interested in following those restrictions carefully, I just try to be aware.

Share this post


Link to post
Share on other sites

OMG me too! Like you, I have times when I make mistakes and have no reaction and then I have D out of nowhere when I eat specialty gluten-free foods at home. I have to wonder whether my reactions to gluten are really that wildly variable, or if I'm sensitive to something else I haven't figured out.

Do you think all your reactions are definitely gluten? It would be a great relief to hear that I'm not alone in reacting to traces on one day and not on another.

By the way, I have also wondered about desensitization. Do we make ourselves super-sensitive by avoiding gluten too well? Sort of like allergies? There is some literature suggesting that celiacs can desensitize which is why there is ongoing research on a vaccine.

____________

The gluten reactions are pretty distinct in that I get certain neuro symptoms and I get really sleepy. And after that nap, my sense of balance is off - and I'm clumsier- I have to work on my balance, unlike a regular person, so this is more noticeable to me. I might still be able to do some of the test yoga poses, but I'll be struggling more with it. But my one eye also tends to not track as well. My stomach will also puff out a bit and my ankles will swell, besides my face tends to break out a day or two later. A bad glutening, and my joints will flare, and I will get pretty miserable. Every thing slows down and stiffens up.

The other way to suspect a gluten reaction is - did I just eat something new, or a new product, that came in a box/package I just opened ? And does the label say "gluten free?"

Allergic reactions are different. There is the standard spring pollen reaction, stuffy nose. A lot of mold/dust will make me wheeze. Also, I have contact allergies to certain plants, hays, some antibacterial soap (gaaah, I hate that stuff) and unknown things. I had a round of that tonight - I came home, my hands are itching like crazy, and it's either a reaction to the soap in the restaurant restroom, or something residual on my steering wheel cover, because this has happened before after driving that car. (sometimes my spouse drives it... really need to clean it....) It was starting to blotch up. I took off the bracelet/watch and washed my jewelry, and hands w/ cold water and soap about 5 times, and a half hour later it was going down without having to take antihistamine. Now, one and a half hours later, it's gone.

Sometimes I eat the unknown things I react to, and that's also a different reaction, more like a classic feeling of generalized itchiness, my lungs will also tighten up a little sometimes, and my eyelids might get a little puffy. Since this happens sometimes, inconsistently with non organic dairy, I wonder if it is a reaction to tiny amounts of antibiotic or other chemical residue that they treated the poor cows with. Organic cheese okay. Sliced cheese product that is supposed to be okay, but made me itch a little for a few hours, then went away, no other symptoms, likely the mystery allergy.

Share this post


Link to post
Share on other sites

When I meet "celiacs" who feel like they can cheat once in a while. I immediately wonder if their Dr actually told them that and when. If I had listened to the Dr who diagnosed me(4 1/2 months ago) I would have "continued eating gluten until the symptoms got worse, and not tested my kids until they were 12 because a gluten-free diet can effect growth" Oh, and "eating rye bread because many celiacs can tolerate rye!" ?????? REALLY?!!

Thank God for the internet and this forum.

I'm not sure how you explain to them that they are wrong and they need a new Dr and that they are hurting themselves. And eating a gluten-free diet is "Too hard!" What a load of crap.

It's like we had the same doctor! When I was trying to get my son diagnosed his doctor flat out did not believe that I knew what was going on with my son. He accused me of "wanting" my son to have celiac disease! He also said that the diet was "incredibly difficult" and there was "absolutely no way you are adhering to it 100%". Well he sang a different tune when all of the test results came back! He congratulated me on sticking to the diet so well and said that I was right about my son being celiac. I was sad about my son's diagnosis but thrilled that he had to admit he was wrong.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   6 Members, 0 Anonymous, 280 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

  • Forum Statistics

    • Total Topics
      110,273
    • Total Posts
      949,834
  • Member Statistics

    • Total Members
      77,794
    • Most Online
      3,093

    Newest Member
    Amylouise928
    Joined
  • Popular Now

  • Topics

  • Posts

    • If celiac disease is the cause of your reflux, it can take weeks, to months or a year for healing on a gluten free diet.    I have celiac disease but only was anemic when diagnosed.  Last year, I developed reflux for the first time.  Another endoscopy determined that I  had healed from celiac disease, but stomach biopsies revealed chronic autoimmune gastritis which slowly went into remission on its own after a many months.   I assume my Gastritis will flare up again in the future.   Unlike celiac disease where gluten is the trigger, the trigger for AI Gastritis is unknown.   To cope, I would sleep elevated and avoided eating late meals giving my stomach time to empty long before bedtime.  I also reduced coffee and ate a bland diet.  Reflux is awful.  I am so sorry that you are ill.  
    • Hi, how fast after starting with gluten free diet did you notice any improvement with heartburn or reflux? I am 4th day of diet and reflux seams to be worse than earlier. So I am a bit concerned. Please, help!!! Aya
    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
  • Blog Entries

  • Upcoming Events