• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

Hi everyone, this is my first post. Every time I do a search on celiac, the most helpful responses seem to be this website/forum, so I figured I would sign up.

 

I am recently diagnosed with a wheat allergy. I've dealth with years of gastrointestinal distress. I went to a few GIs in the last two years. One called my problems IBS without running any tests and sent me out the door.  Another doctor did a colonoscopy, which came back negative, and also chalked up my symptoms to IBS.  I've dealth with alternating diarrhea, constipation., gas, bloating, and a number of other non-GI related symptoms - asthma, finger swelling, hives, runny nose, nauseau.  My symptoms seem to come and go every few years but it's back and I've decided I'm not willing to deal with this anymore. My gen practicioner found the wheat allergy, and I decided to make an appointment with a GI on my own to further investigate. Seems a lot of my symptoms could point to a potential celiac or gluten sensitivity issue.

 

I am pending the results of a celiac genetic test.My doctor said it would be the test of choice since I've already been gluten-free for a few weeks (since my wheat allergy diagnosis). I do have a few questions:

 

1. Doctor's assistant wanted me to come in to review my results of the genetic test, saying it was a complicated result, based on percentages, and it better to review with the doctor in person.  Is this legit? I know the doctor ran a celiac profile - would this also test of antibodies, or just genetic testing? Does anyone have an idea of what I can expect once I go in. I can't wait to hear the results. As crazy as it sounds, I want a positive result so I can just work on getting myself better again.

 

2. On a somewhat related topic, I figured I woudl ask ... how do you all deal with the anxiety of going out in public, when there's always a chance of the big d? I'm in constant fear of public D, to the point where I sometimes cancel plans because I am too embarassed. I don't go all the time, but it's enough where there's a chance it could happen, and I'd rather not deal with it. I know my friends won't judge me, but regardless, I am embarassed to go to the bathroom multiple times, esp in public. I'm afraid strangers will judge me, or that i won't get to a bathroom in time.

 

thanks in advance! I'm looking forward to getting you know you all more here

 

~Ami

Share this post


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


I know very little - like you, I came here to post before I got my test results.  Like you, I share many of your symptoms.

 

Until you see the doctor, you're going to be worked up over what may or may not be celiac. I was the same, wanting answers NOW. Having the genes doesn't mean you are positive for celiac, but that celiac can't be ruled out.  The gold standard celiac diagnosis is positive antibodies and positive endoscopy with pathology testing of the small intestine biopsies, or having HD, the skin condition, which indicates celiac.

 

I also know what you mean about public D because the urgent explosive D would often happen to me at work during and after lunch, and it took a while for me to make the connection to what I was eating, and often it was wheat/gluten.

 

Certainly, someone more knowledgeable than I is going to answer your post with better/more informed information.  What I want to add tho is that whatever the results of your tests, gluten is a villain, that I do not doubt.  I am negative in blood and scoped biopsies for celiac, but I chose to eliminate gluten anyhow "as an experiment."   3 weeks in, I have had D only 2x, and am less constipated and having more normal movements.  The same could possibly happen for you by eliminating gluten.  BUT DON'T ELIMINATE IT until you are done testing.  In the meantime, I would advise you to recall the foods you ate when the urgent D occurred, and when out make it a point to not eat those items, or not eat altogether when out.  If you don't put something in during those situations, nothing can come out near immediately. Of course, I'm assuming a causal relationship between food and D, which is how it was for me.

 

Don't sweat getting the results; I know you are anxious, but you are not alone. Soon enough, you will have some answers.

Share this post


Link to post
Share on other sites

Hi Ami and Chicksinger,

Welcome to the forum!  

 

Ami- I'm a bit confused by your post.  When you say you were diagnosed with a wheat allergy, was that by an allergist (a skin test)? And if you have been avoiding wheat, the main source of gluten, what exactly have you been eating that is giving you all of these problems currently?  A lot of malt, barley, or rye?  Maybe you've become more sensitive to small amounts having taken out the larger sources?  If your "wheat allergy" was not a skin test, is it possible that you may simply be a celiac?  It is possible to have both a wheat allergy and to be celiac.  They are different things.  But I am just curious if the label was correct.

 

The genetic testing I received was very clear when I received it at home.  But I had already had a positive endo biopsy and was positive for antibodies, so it was expected.  My doc simply said that I carried one of the genes associated with celiac and didn't explain it any further than that.  It can get quite complicated, based on other posts I've seen.  But I'm not sure we need to know anything more than positive or negative.  Someone chime in if I'm off base...  The celiac panel is a test for antibodies.  It is separate from the genetic testing.  Maybe the doc wants to see you because you might not be eating enough gluten for the celiac panel to read as a positive?

 

I'm afraid I can't help you much with the anxiety over the bathroom.  I experience C when glutened.  You guys with D would just laugh and laugh at those of us who pray from a BM as if we were praying for rain after a drought! I would even do a dance if that helped!! 

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

Share this post


Link to post
Share on other sites

Hi Ami and Chicksinger,

Welcome to the forum!  

 

Ami- I'm a bit confused by your post.  When you say you were diagnosed with a wheat allergy, was that by an allergist (a skin test)? And if you have been avoiding wheat, the main source of gluten, what exactly have you been eating that is giving you all of these problems currently?  A lot of malt, barley, or rye?  Maybe you've become more sensitive to small amounts having taken out the larger sources?  If your "wheat allergy" was not a skin test, is it possible that you may simply be a celiac?  It is possible to have both a wheat allergy and to be celiac.  They are different things.  But I am just curious if the label was correct.

 

The genetic testing I received was very clear when I received it at home.  But I had already had a positive endo biopsy and was positive for antibodies, so it was expected.  My doc simply said that I carried one of the genes associated with celiac and didn't explain it any further than that.  It can get quite complicated, based on other posts I've seen.  But I'm not sure we need to know anything more than positive or negative.  Someone chime in if I'm off base...  The celiac panel is a test for antibodies.  It is separate from the genetic testing.  Maybe the doc wants to see you because you might not be eating enough gluten for the celiac panel to read as a positive?

 

I'm afraid I can't help you much with the anxiety over the bathroom.  I experience C when glutened.  You guys with D would just laugh and laugh at those of us who pray from a BM as if we were praying for rain after a drought! I would even do a dance if that helped!! 

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

Hi Shellie,

 

I went to the doctor for a routine check-up, mentioned my stomach symptoms, and she did a blood allergy panel. As far as I could tell, the blood test did not test for celiacs, but it did test for common food and environmental allergies. This was about two weeks ago. The results showed a wheat allergy, so I've given up wheat. I basically decided at the same time to cut out gluten entirely to see how it affected me.  Week 1 I had one D. Week 2 I had another really bad bout of it, but I suspect food poisoning (bad shrimp!). My bowel movements seemed to be improving until the bad shrimp incident.  In between week 1 and week 2, I had horrible cramps and my husband, in trying to do whatever he could do, took me to the ER, where they did a CAT scan that only indicated gastritis. Blood tests there showed a slightly elevated white blood cell count. They wanted a stool sample, but I was unable to provide one.

 

The GI I met with was about a week ago. I've since had the genetic testing, the results of which were sent to her office. I go in two days to discuss with her the results and next steps.

 

I suspect I may have celiac and the wheat allergy.  I do seem to be less symptomatic in regards to hives and my nasal allergies. Based on what I've read, I need to give my intestines a bit longer to heal before I can tell if I am gluten insensitive or not. If I don't feel better in a month - do you think that long enough to determine it might not be working for me, and maybe something else is the culprit? 

 

I hope this doctor knows her s$&% and can get to the bottom of this. I think the first time I went to a GI was ten years ago!

 

Side note, I apologize for my HORRIBLE spelling errors in the first post! I was so anxious to post, I didn't even spell check. Ugh, I'm a mess!

 

Ami

Share this post


Link to post
Share on other sites

My son was diagnosed with Celiac by blood test and endoscopy.  I just wanted to let you know that the genetic test will not confirm whether or not you have celiac.  My son's genetic test indicated he had a LOW probability of having it, leading his first doctor to determine that he did not have a problem with gluten.  Luckily, we didn't stop there and continued looking.

 

I had a positive blood test for celiac and that was enough for me.

 

Keep a diary of all your symptoms . . . sometimes it is hard to tell that you are improving.  For me, I just used a calendar and every week, I had less and lees to note.  After about a month of being gluten free, I maybe had one symptom every two or three weeks.  Three years later, I STILL have anxiety about bathroom issues, even though I no longer have the issues.  I guess if you worry about something for years and years, it is a hard habit to break.

Share this post


Link to post
Share on other sites
Ads by Google:


I'm not a huge fan of the genetic tests. They basically tell you if you are in the group of people (around 30% of the population) which is more likely to get celiac but a negative test doesn't mean you can't get it. We have board members who had negative DQ2 & 8 tests yet they had positive tests for celiac disease.... Doesn't seem to help much in my opinion.

 

If you are worried that genetically you are at risk of developing celiac disease, you could always look at your family history. Does your family have a history of autoimmune problems like celiac disease, thyroiditid, diabetes (T1) RA, lupus or things like that? If so, you're at risk. I have celiac disease on both sides of my family, thyroid problems are very common and have a cousin with RA; plus I already had one AI problem decades ago so once I heard of celiac disease, I knew me and my kids were at risk.

 

You might want to request celiac disease tests immediately. Some people  have higher auto-antibody levels that linger for weeks, months, or even a year (in the tTG IgA test). Ask for these tests and get them done as fast as you can - if possible:

  • tTG IgA and tTG IgG - these are the most common tests and the ones that seem to stay high longer
  • DGP IgA and DGP IgG - great new tests that are good at detecting early celiac disease, but they tend to become negave fairly quickly
  • EMA IgA -  shows advanced damage and will normalize faster than tTG tests
  • total serum IgA - a control test
  • AGA IgA and AGA IgG - older and less reliable tests that aren't used as often now; thought to work for some with non-celiac gluten intolerance (NCGI)

I can't offer advice on the big D. I had the opposite problem and bloating. Give your symptoms a few months to normalize. Some symptoms improve quickly but others can take months or years to get better with the gluten-free diet.

 

Best wishes.

Share this post


Link to post
Share on other sites

Hi Ami and Chicksinger,

Welcome to the forum!  

 

.......

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

 LOL Shellie - I am an old lady that now sings occasional karaoke with my grown daughter. Back in the late 70s, early 80s, I sang with a few local bands in local clubs in New Jersey and had a hoot and hollering good time, tho we never got famous :(

 

Gluten doesn't seem to affect the voice, lol, though I have a geographic/fissured tongue that I'm hoping going gluten free will heal.

Share this post


Link to post
Share on other sites

Hpefully your GI doctor is well versed in celiac diagnosis (as they should be these days). They should order a panel that includes a tTG IgA and total IgA at the very least. tTG IgA is a pretty solid test for Celiac and the new DGP test is at least as good, if not better than the tTG IgA and EMA testing can be helpfull as well. 

 

Genetic testing is almost useless in that all it can do is show a high probability that you don't have Celiac Disease but it isn't even 100% for that and if it is positive id really doesn't even mean thata you have Celiac at all. So, it is more or less a waste of time.

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   10 Members, 1 Anonymous, 1,173 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 05/26/2018 - If you haven’t tried a savory pancake, then you’ve been missing out. In many places in the world, savory pancakes are more common than the sweet pancakes. They make a great lunch or dinner twist. This gluten-free version combines scallions and peas, but feel free to add or subtract veggies at will. Serve pancakes them warm with butter for a delicious twist on lunch or dinner.
    Ingredients:
    3 large eggs 1 cup cottage cheese ½ stick salted butter, melted ¼ cup all-purpose gluten-free flour 2 tablespoons vegetable oil plus more for skillet 1 cup shelled fresh or frozen peas, thawed 4 scallions, thinly sliced, plus more for serving 1 teaspoon kosher salt plus more, as desired Directions:
    If using fresh peas, blanch the peas about 3 minutes in a small saucepan of boiling salted water until tender, about 3 minutes (don’t cook frozen peas). Drain well.
    In a blender, add eggs, cottage cheese, flour, 2 tablespoons oil, and 1 teaspoon salt, and purée until smooth. 
    Transfer batter to a medium bowl and stir in peas and scallions. 
    Batter should be thick but pourable; stir in water by tablespoonfuls if too thick.
    Heat a lightly oiled large nonstick skillet over medium heat. 
    Working in batches, add batter to skillet by ¼-cupfuls to form 3-inch-4-inch rounds. 
    Cook pancakes about 3 minutes, until bubbles form on top. 
    Flip and cook until pancakes are browned on bottom and the centers are just cooked through, about 2 minutes longer.
    Serve pancakes drizzled with butter and topped with scallions.
    Inspired by bonappetit.com.

    Jefferson Adams
    Celiac.com 05/25/2018 - People with celiac disease need to follow a lifelong gluten-free diet. However, once their guts have healed, they can still be sensitive to gluten. Sometimes even more sensitive than they were before they went gluten-free. Accidental ingestion of gluten can trigger symptoms in celiac patients, such as pain in the gut and diarrhea, and can also cause intestinal damage. 
    A new drug being developed by a company called Amgen eases the effects of people with celiac disease on a gluten-free diet. Researchers working on the drug have announced that their proof-of-concept study shows AMG 714, an anti-IL-15 monoclonal antibody, potentially protects celiac patients from inadvertent gluten exposure by blocking interleukin 15, an important mediator of celiac disease, and leads to fewer symptoms following gluten exposure.
    The drug is intended for people with celiac disease who are following a gluten-free diet, and is designed to protect against modest gluten contamination, not to permit consumption of large amounts of gluten, like bread or pasta.
    AMG 714 is not designed for celiac patients to eat gluten at will, but for small, incidental contamination. Francisco Leon, MD, PhD, study director and consultant for Amgen, says that their team is looking at AMG 714 “for its potential to protect against modest contamination, not deliberately eating large amounts of gluten, like bread or pasta.” 
    Amgen hopes that AMG 714 will help celiac patients on a gluten-free diet to experience fewer or less sever gluten-triggered events.
    Findings of the team’s first phase 2 study of a biologic immune modulator in celiac disease will be presented at the upcoming Digestive Disease Week 2018. 
    Read more at ScienceDaily.com

    Jefferson Adams
    Celiac.com 05/24/2018 - England is facing some hard questions about gluten-free food prescriptions for people with celiac disease. Under England’s National Health Plan, people with celiac disease are eligible for gluten-free foods as part of their medical treatment. 
    The latest research shows that prescription practice for gluten-free foods varies widely, and often seems independent of medical factors. This news has put those prescribing practices under scrutiny.
    "Gluten free prescribing is clearly in a state of flux at the moment, with an apparent rapid reduction in prescribing nationally," say the researchers. Their data analysis revealed that after a steady increase in prescriptions between 1998 and 2010, the prescription rate for gluten free foods has both fallen, and become more variable, in recent years. Not only is there tremendous variation in gluten free prescribing, say the researchers, “this variation appears to exist largely without good reason…”
    Worse still, the research showed that those living in the most deprived areas of the country are the least likely to be prescribed gluten-free products, possibly due to a lower rate of celiac diagnosis in disadvantaged groups, say the researchers.
    But following a public consultation, the government decided earlier this year to restrict the range of gluten free products rather than banning them outright. As research data pile up and gluten-free food becomes cheaper and more ubiquitous, look for more changes to England’s gluten-free prescription program to follow. 
    Read more about this research in the online journal BMJ Open.

    Jefferson Adams
    Celiac.com 05/23/2018 - Yes, we at Celiac.com realize that rye bread is not gluten-free, and is not suitable for consumption by people with celiac disease!  That is also true of rye bread that is low in FODMAPs.
    FODMAPs are Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. FODMAPS are molecules found in food, and can be poorly absorbed by some people. Poor FODMAP absorption can cause celiac-like symptoms in some people. FODMAPs have recently emerged as possible culprits in both celiac disease and in irritable bowel syndrome.
    In an effort to determine what, if any, irritable bowel symptoms may triggered by FODMAPs, a team of researchers recently set out to compare the effects of regular vs low-FODMAP rye bread on irritable bowel syndrome (IBS) symptoms and to study gastrointestinal conditions with SmartPill.
    A team of researchers compared low-FODMAP rye bread with regular rye bread in patients irritable bowel syndrome, to see if rye bread low FODMAPs would reduce hydrogen excretion, lower intraluminal pressure, raise colonic pH, improve transit times, and reduce IBS symptoms compared to regular rye bread. The research team included Laura Pirkola, Reijo Laatikainen, Jussi Loponen, Sanna-Maria Hongisto, Markku Hillilä, Anu Nuora, Baoru Yang, Kaisa M Linderborg, and Riitta Freese.
    They are variously affiliated with the Clinic of Gastroenterology; the Division of Nutrition, Department of Food and Environmental Sciences; the Medical Faculty, Pharmacology, Medical Nutrition Physiology, University of Helsinki in Helsinki, Finland; the University of Helsinki and Helsinki University, Hospital Jorvi in Espoo, Finland; with the Food Chemistry and Food Development, Department of Biochemistry, University of Turku inTurku, Finland; and with the Fazer Group/ Fazer Bakeries Ltd in Vantaa, Finland.
    The team wanted to see if rye bread low in FODMAPs would cause reduced hydrogen excretion, lower intraluminal pressure, higher colonic pH, improved transit times, and fewer IBS symptoms than regular rye bread. 
    To do so, they conducted a randomized, double-blind, controlled cross-over meal study. For that study, seven female IBS patients ate study breads at three consecutive meals during one day. The diet was similar for both study periods except for the FODMAP content of the bread consumed during the study day.
    The team used SmartPill, an indigestible motility capsule, to measure intraluminal pH, transit time, and pressure. Their data showed that low-FODMAP rye bread reduced colonic fermentation compared with regular rye bread. They found no differences in pH, pressure, or transit times between the breads. They also found no difference between the two in terms of conditions in the gastrointestinal tract.
    They did note that the gastric residence of SmartPill was slower than expected. SmartPill left the stomach in less than 5 h only once in 14 measurements, and therefore did not follow on par with the rye bread bolus.
    There's been a great deal of interest in FODMAPs and their potential connection to celiac disease and gluten-intolerance. Stay tuned for more information on the role of FODMAPs in celiac disease and/or irritable bowel syndrome.
    Source:
    World J Gastroenterol. 2018 Mar 21; 24(11): 1259–1268.doi:  10.3748/wjg.v24.i11.1259

    Jefferson Adams
    Celiac.com 05/22/2018 - Proteins are the building blocks of life. If scientists can figure out how to create and grow new proteins, they can create new treatments and cures to a multitude of medical, biological and even environmental conditions.
    For a couple of decades now, scientists have been searching for a biological Rosetta stone that would allow them to engineer proteins with precision, but the problem has remained dauntingly complex.  Researchers had a pretty good understanding of the very simple way that the linear chemical code carried by strands of DNA translates into strings of amino acids in proteins. 
    But, one of the main problems in protein engineering has to do with the way proteins fold into their various three-dimensional structures. Until recently, no one has been able to decipher the rules that will predict how proteins fold into those three-dimensional structures.  So even if researchers were somehow able to design a protein with the right shape for a given job, they wouldn’t know how to go about making it from protein’s building blocks, the amino acids.
    But now, scientists like William DeGrado, a chemist at the University of California, San Francisco, and David Baker, director for the Institute for Protein Design at the University of Washington, say that designing proteins will become at least as important as manipulating DNA has been in the past couple of decades.
    After making slow, but incremental progress over the years, scientists have improved their ability to decipher the complex language of protein shapes. Among other things, they’ve gained a better understanding of how then the laws of physics cause the proteins to snap into folded origami-like structures based on the ways amino acids are attracted or repelled by others many places down the chain.
    It is this new ability to decipher the complex language of protein shapes that has fueled their progress. UCSF’s DeGrado is using these new breakthroughs to search for new medicines that will be more stable, both on the shelf and in the body. He is also looking for new ways to treat Alzheimer’s disease and similar neurological conditions, which result when brain proteins fold incorrectly and create toxic deposits.
    Meanwhile, Baker’s is working on a single vaccine that would protect against all strains of the influenza virus, along with a method for breaking down the gluten proteins in wheat, which could help to generate new treatments for people with celiac disease. 
    With new computing power, look for progress on the understanding, design, and construction of brain proteins. As understanding, design and construction improve, look for brain proteins to play a major role in disease research and treatment. This is all great news for people looking to improve our understanding and treatment of celiac disease.
    Source:
    Bloomberg.com