0
pixiegirl

Totally Glutened...

Rate this topic

Recommended Posts

Well, every year I go to thanksgiving at my brother's house. I've only been gluten-free for 6 weeks, well now I'm back to square one. Sigh, its depressing, I was in Florida for 5 days and the nights we ate out I did better then eating at my brothers house.

I know everyone, including myself, is new with this, but I really felt a few times like it was just too much bother for everyone to watch out for me. They would stir a pot with "gluten something or other" in it and then stir my gluten free food. The turkey was stuffed and on Thanksgiving I ate meat from the outside of the bird but after that they tossed it all into one big tupperware thing and there was stuffing that was stuck on some of the turkey mixed in, so I could eat turkey after that.

Everyone kept telling me, "oh its just this one time" or "it can't hurt you on just one trip"... blah blah blah. No matter how many times I told them it never sunk in. At one point, again this is new to me so I was asked a lot of questions about being Celiac... and I told them 1 in about every 133 people have some sort of wheat/gluten intolerance and everyone at the table came down on me. No way, I'm wrong, they have never heard of it. Twice I was told I was a pain in the ass (by the same person). I got the distinct feeling they all thought I was making it up. Most of my life I've been very healthy and yet I was called a hypocondriac a few times. I never get sick, I never read about something and then "get it" I've never been close to being a hypocondriac!! I was really hurt and I'm not that easily offended.

And of course along with all this I've got the runs back and all my stomach problems, I know I was glutened every single day to various degrees. I'm home now and so so glad. Its my family so I'll give them another chance but it won't be for a while, this was waaaaay to much for me to handle.

Sorry for the whine....

Susan :unsure:

Share this post


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


:( susan---you were doomed when you ate the turkey :( --it cant have stuffing in it at all for us to eat it--we cant eat from the outside even and when you saw them stirring your food with the glutened spoon :angry: , you should not have eaten it either---you arent being rude or anything like that--you are just taking care of you and that is the way it has to be forever and ever--you have to take care of you and you havent ruined weeks of work--you just messed up for a few days and just stay gluten-free and you will get better again--if you are with them all at christmas--you just have to "stick to your guns" and refuse to eat anything containing gluten--this is your lifestyle and they will have to get used to it--feel better :) deb

Share this post


Link to post
Share on other sites

I'm really sorry your relatives just don't understand and don't want to listen! That's gotta be so hard.

So maybe in your Christmas letter to your relatives you can include a celiac article from a "reliable" source (since YOU obviously aren't one - according to them anyway).

Here's one: Newsweek article

Here's a list of articles:

list of news articles

Or there was another magazine article that come out in June or July I think that mentioned the 1 in 133 statistic and the average time to diagnosis as 20 years that was in Time or another major magazine like that but I can't find it.

There was also an article in the Reader's Digest this past summer about 10 diseases that doctors miss, and celiac was one of them.

Or maybe you can just have the article on hand next time you see them and if they try to tell you that just a little bit won't hurt you, you can give them the article.

Good luck!

Share this post


Link to post
Share on other sites

Don't let yourself be guilt-tripped by the ignorant any longer. Nor physically harmed by them! While even I (who often profess to having fabulous family who may not have heard much of this, but accept it even when it's a pain) felt a bit bad about always checking on the double dipping situation and so forth during Thanksgiving (I did the cooking, I was worried about the pumpkin butter on the bread!), at the end of the day, we need to have the confidence that we've made the right choice for us, regardless of what others think.

We are nitpicky about this because our bodies are giant chemical vats, and chemistry is nitpicky. What anyone else thinks is irrelevant to the choices of what you put in your mouth once you have decided that you are doing the right thing. It's great that you'll be giving your family forgiveness, but I hope we can help give you some steel rods in that spine! ;-) :-D

Share this post


Link to post
Share on other sites

I never thought I would find more patience and understanding from strangers, rather than my own family. My family who should be tested for their own health, will not.

I could complain about them for hours.

This is my body and now I know how to keep myself healthy. No one will put my health at risk. My family is not allowed to touch my food. I will bring my own where ever I go.

Laura

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks everyone for all the replies... Laura if you want to complain I'll be happy to listen, I'm feeling the same way about my family right now, sigh. I'm actually thinking of skipping Thanksgiving next year and doing it here with my daughter.... because in truth if I would have stuck to my guns I'd not have been able to eat virtually anything.

Eating in my family is.... well its how we socialize, it always has been, I know most of your families are probably the same but mine takes it to a different level for sure. Other then Turkey day we ate out every single evening (leftovers were for lunch) and as you all know its hard in restaurants.... no one in my family would even consider going to Outback or PF Changs, I'd guess they have never been in one and they wouldn't go. All meals are eaten in small very nice, very expensive restaurants (however I honestly felt more concern about my condition in the restaurants then at my brothers house), with wine flowing, appitizers, bread, many courses, dessert, coffee, after dinner liquores... food is what we do... we have a number of food reviewers (journalists) in the family.... anyhow, in truth I just don't fit in like I use too.

Any how thanks for the kind words... I can't wait for my symptoms to go away!

Susan

Share this post


Link to post
Share on other sites

Susan,

I just wanted to offer a few words of support! At least you have this forum backing you! :) I know its tough, with a family of "food lovers". Personally I come from a family of bread/carb loving fanatics. We all grew up with a mother who had a loaf of fresh homemade bread in the oven almost every morning! Now that I've expressed to many family members my possible issues with gluten I've heard many respond "Oh I could never live without bread!!" So I know it can be tough getting them to accept your disease.

My other suggestion would be to explain to them how awfully ill it makes you, in significant detail. Not everyone wants to talk to freely about their symptoms or reactions to gluten, but its seemed to work well for my family! :) Once they've heard some of the "gorey" reactions I've had to ingesting it they seem to understand that I'd rather live without that misery and survive without the luxury of bread.

I wish you luck in their ability to grow and understand your situation and what you can and can't have. It can be tough, but the relief you receive should be worth the agony they may put you through in the process of their learning. They can only refuse to understand it for so long.. Its just the time in between may be tough!

Good luck!! :D

Share this post


Link to post
Share on other sites
Guest imsohungry

Awww, Susan (((HUG)))

First of all, it is hard. You probably did exactly what I would have done in your situation! Actually, we gathered at my mom's house for thanksgiving for breakfast. She made a huge breakfast and tried to cook me plenty of gluten-free things :) Unfortunately, she made a breakfast "buffet" and placed all the food together like a long salad-bar for our family to serve themselves (there was about 20 of us). Cross-contamination was everywhere!

However, she had tried so hard, that I HAD to eat. (She was so proud of herself for working to make gluten-free food...it was so sweet). So, I ate. (I did explain about the spoon cross-contamination thing for next time). But like you, I know I was glutened (I felt it).

My point is...sometimes you feel you gotta do what you gotta do. I understand your "need" to eat something...even though you knew it was going to make you sick. I just hate it for you that your family was soooo rude (I hope that doesn't offend you)...but they were acting like as*holes to you! :blink:

I'm sending you hugs and hoping the next holiday is better for you. Why not pack a little something in your purse/suitcase as a "stand-by" for the nights that they all go out to eat?

Much hugs. -Julie

Share this post


Link to post
Share on other sites

I truly feel for you. I've only been gluten-free for 2 weeks, having been diagnosed on 11/11, and I'm already dreading the family visits (of course, when THEY are being high-maintenance for a dozen different reasons, that's different!)

It's great that we have places like this where people understand! I don't know how I'd be starting out on this long journey without it.

we understand

Share this post


Link to post
Share on other sites

Thanks again everyone!! You all made me feel better, I don't know how we all survived before the internet. :P

There were times where my family was a bit rude but I think some of it (not all for sure) was just due to the fact they have never even heard of Celiac before, I guess it all takes some getting use too. But I have told my mom that I'm thinking of doing Thanksgiving at home next year.

Eating other meals at my brothers house won't be as difficult, he is a fabulous chef but at home they often eat very simply, grilled fish, veggies and rice... I will say the nicest person was my brothers girlfriend (of 7 years, girlfriend sounds so insignificant) she was very careful with the other meals and told me all the ingredients of their marinades and such, so that was very nice.

Thanksgiving is such a gluten heavy meal.... Oh well, thanks for your support!!

Susan

Share this post


Link to post
Share on other sites


Ads by Google:


;) I totally know how you feel. I was in the kitchen making sure any cross contamination didn't happen and my 76 year old grandma rolled her eyes, like I was being to paranoid or making up my sickness..

Luckily my mom understands and tried very hard during my visit. I have been gluten-free for a couple of months now. Good luck. Something we will have to live with for a very lond time :lol:

Share this post


Link to post
Share on other sites

I totally relate to relatives who don't get it. Just yesterday, my husband said to me "I don't think you really have this disease" How about that! He was in the room when the doctor showed me my biopsy! This attitude is because I do not react to gluten. I was totally shocked. I will be going to the Celiac Center at Columbia University so I can positively justify my diet.

Share this post


Link to post
Share on other sites
Guest imsohungry

I've learned something over the years.

There are two types of insensitive people:

1. Those who are simply uneducated and ignorant to a problem

2. Those who are educated and choose to be rude

The good news is that there is HOPE for those who are uneducated and willing to learn

The bad news is that those who are educated and choose to be rude have made a decision to remain that way.

My point??? Some people/relatives are uneducated about celiac disease and ignorant to the problems and complications that it creates. For those people, we must be patient and educate them to the best of our ability.

Now, some relatives will take this new knowledge and work to incorporate it, others will go through a period of denial, and still others will choose to ignore the issue completely.

I try to remember that, in a way, my relatives are going through the same stages I did when diagnosed. First I was curious and wanted to know more information, then I was a little relieved and scared, then I wanted to cheat "just a little," then I got irritatated that this dang diet is such a pain in the butt, and now...I'm gradually learning to work with it and actually enjoy the learning and the results (feeling better)! B)

I send hugs to you all. -Julie :)

Share this post


Link to post
Share on other sites

Julie,

What a great perspective to take. Thanks for posting that. I think I'll utilize that in my strategy to dealing with relatives and friends regarding my new gluten-free lifestyle. I know I have a few ignorant friends who just won't understand, and well so be it. :)

Thanks!

Share this post


Link to post
Share on other sites

Hi everyone.

Well, I've been gluten-free for just one day, having received the results of my biopsy and blood workd two days ago. :( which confirmed why I have had pain and problems since I was a baby. I'm now 48! So, it's a final relief....(well, at least I know now).

With Christmas coming up, there's going to be get-togethers with family and friends. :rolleyes: Some of them are great, and understand about coeliac disease and gluten intolerance. While others we will be having a meal with are totally ignorant, but sweet people. I'm hoping there will be food there which is ok for me. :unsure:

This forum is awesome. :D I've already found a lot of information which is helping me understand celiac disease more, and the diet.

Are there many of you who have an intollerance to rice as well as all the other things? I'm finding it hard to find a breakfast cerial here. I guess I could make myself a baked custard or something else, but I'm often really tired...I also have chronic fatitue :angry: so I usually want something quick and easy first thing in the morning with my cuppa.

Hope I haven't raved on too much. Good luck to you all.

Maggie :)

Share this post


Link to post
Share on other sites
:D welcome maggie---where are you from---i take it rice bothers you, that could limit the cereal you can have--there are corn cereals----if you can eat rice, post fruitty and cocoa pebbles are gluten-free---health valley has rice or corn crunch ums, they are similiar to chex's--there's gorilla munch---cranberry sunshine--i eat quaker cracker jack corncakes (only the original, not butter toffee, it contains barley) with peanut butter and quaker caramel corn cakes are good too--my dad is into scrambled eggs for breakfast, he doesnt like any of the cereals---- ;) you have found the best forum for questions--we are a good bunch of people in here and i think many of us have become friends through here-- :D deb

Share this post


Link to post
Share on other sites

hello everyone,

well i also understand the whole family thing. my grandmother made thanksgiving this year and it was 99% gluten-free. my mother and i provided the turkey,bread and cornmeal for the stuffing. my grandmother worked her behind of so that my parents and my family could eat gluten-free. it was the aunts that cause a fuss. my aunt called and was griping about how the dressing was going to taste gross bc it was gluten-free. my grandmother explained that it is the exact same as non gluten-free except we had to provide the gluten-free cornmeal. she couldnt grasp that. she was so mad that she brought her own dressing. that caused an even bigger fuss bc she had to do that. my mother also baked all the pies and to my aunts surprise they were pretty darn good. but all the other non celiac members were upset bc she made it all gluten-free for the 5 of us. when there was 10 of them. but my grandmother stuck to her guns. she even let eneryone know that if the spoons out of each bowl left that bowl sh ewas going to let them have it. i think she has been more supportive of the whole thing bc of how sick my dad has been. she has watched him go in and out of the hospital. shes already lost one child and now has my father with celiac disease and one of my aunts with some deteriorating disease. it turned out to be wonderful. every year our family fights over the chocolate covered cherries my grandmother makes and in the end i nicely stole my aunts 4 cherries she had hidden in the kitchen. revenge is tastefully sweet in this case. i hope you get better and that your family will one day come to understand that gluten is gluten no matter how you look at it.

christi

Share this post


Link to post
Share on other sites

My Thanksgiving started out with rolling eyes and "You're not doing that diet thing TODAY are you?" Followed by a spoon covered with flour being shoved into a casserole that I would have been able to eat! Also my hostess had promised a turkey breast on the routisserie with no stuffing in addition to the stuffed bird but CHANGED HER MIND! (Didn't think anyone would eat it). Boy was I cranky!!!

Share this post


Link to post
Share on other sites

B) Sorry Deb for not posting earlier. I got lost!

I'm in Australia. Yes I do have a problem with oats, rice, maybe corn, I know peanut butter is out :angry:

I tried a rice ceriel, which ended up tasting like a really badly made rice pudding.

That was before I realised that rice makes me really sick as well.

It seems that we don't have the great variety of cerials that you have..I may have to immigrate! ;)

I've been having scrambled eggs...boring! -_- I see a dietician in two weeks, so maybe she will help me get started on something which fills me up, but doesn't make me sick.

Now, I'm trying to think of something nourishing for lunch. I tried gluten-free bread. I didn't like it at all. I'm not a bread eater anyway, so I probably won't miss it too much.

It will be great to feel better. I'm looking forward to that!

:D Maggie

Share this post


Link to post
Share on other sites
With Christmas coming up, there's going to be get-togethers with family and friends. :rolleyes: Some of them are great, and understand about coeliac disease and gluten intolerance. While others we will be having a meal with are totally ignorant, but sweet people. I'm hoping there will be food there which is ok for me. :unsure:

Maggie,

Many times i just eat before i go. I've found it far easier to not expect any suitable food at all, and i have a MUCH better time than reading all the ingred labels and having to decide whether to bother correcting person X's "so it's an allergy?" question and wondering whether any backseat chefs thought 'it needed a little more ______' and used a non-gluten-free version of an ingred while a gluten-free brand sat nearby. And on and on.

I'm better off just leaving the issue at home and enjoying myself.

This'll be my first xmas gluten-free, and now i realize i don't really know what i'll do. I'd like to bring something to eat at the table during THE dinner. Hmmm 23 days to figure it out !

Share this post


Link to post
Share on other sites


Ads by Google:


Hi,

Somebody asked me what I had for Thanksgiving at my daughter's house: TURKEY! It was great--so moist and flavorful. And I sat quietly enjoying it as the others ate. I eat mine with lots of Kraft Mayonnaise on it. No one gave me a moment's trouble. Of course I've had years to help them get used to the idea that most foods are poison for me, so that helps (I'm intolerant of all grains, milk & dairy, egg whites, and yeast). I've managed to lose about 20 pounds and keep it off, so that helps too, while everyone else is always struggling with their weight.

Here's the part I really like--I went shopping and bought oranges for Ambrosia Salad (it also has cocoanut & walnuts), canned pumpkin to mix with egg yolks and brown sugar to bake, raspberry sorbet and vanilla soy ice cream to cover with pecans, my own turkey, and a few other things that sounded good, then I prepared them before I went to our family dinner, so when I came home I celebrated my own little Thanksgiving, all by myself, after having a beautiful day with my family.

The topic of food never came up in a negative manner, and this is a true triumph, because last Christmas I even bought each family member a Celiac home test kit from Enterlab, at $118 each. When they mostly didn't get used I learned there has to be a better way than talking, so I have resolved to just be the most positive, healthy-looking individual I can be, taking care of myself in such a way that I really will be healthy, and that's the hard part. I'll take my own bag of food anywhere. It doesn't matter to me anymore what anyone thinks. I'm not breaking my diet for any reason. And this week, when exhaustion set in, I isolated to my home and took good care of myself. Now I'm feeling better, so I can help take care of others too. Welda

Share this post


Link to post
Share on other sites

Believe it or not Maggie, many cold cereals are gluten free. Of course you have to go over the label pretty well.

I was pretty lucky for thanksgiving, my inlaws are also gluten-free and we went to their place. My own family on the other hand thinks i'm exaggerating, or overreacting or whatever....my mom has made a point to look for gluten free recipes for me for my holiday baking. But the rest of the family just doesn't get it. I think they look at it as a 'diet', something that you can cheat on when its inconveinient. But really, I'm the only one who has to understand, its my body my choice and my pain.

If you end up going somewhere for Christmas that doesn't have safe food, you might try bringing your own. You can always say that you didn't want anyone to have to go to any trouble because of your ILLNESS. Let them know that Thanksgiving made you sick for days. They will get it or not, but you won't be at their mercy.

Share this post


Link to post
Share on other sites

Wow, I'm glad I started this thread, its really made me feel better to know that its just not my darn family. I'm actually considering next year to fly into my brother's house the day after thanksgiving... everyone stays for a few days after and that way I can eat good food and still see everyone.

Since Thanksgiving I've spoken to my mom and sister in law about the holiday... my sister in law says don't be mad at everyone, life is too short, and I agree, I'm not mad I was just disappointed. My mom..... sigh.... well she listened to what I had to say and agreed with me and said she is still learning about Celiac and will be more intuned to my diet issues without nasty comments, which of course was good. But then she said maybe you shouldn't be so sensitive.... well I was sick for 5 days, it tends to make you a bit sensitive! Oh well. We'll see how it goes.

Thanks again, Susan

Share this post


Link to post
Share on other sites

Thanks Tom and Gypsyfey for your ideas of eating before going out to a friends place Christmas night, and also for the suggestion of taking my own food with me.

:) They are great ideas that I will most likely take up.

I went with my husband tonight to his work Christmas party. I was glad when the waiters brought out trays of food, as it meant it was a 'help yourself' thing, rather that having to eat what they gave you.

Well, I tried to be sensible. I had salad (it's summer here in the land Down Under) , one baked potato (not a good choice I don't think) a couple of oysters, and roast lamb with mint jelly.

:unsure: I have 'that feeling' in my tummy now, and know there was something (s) that must have had gluten. I feel as big as a house, and really windy. :(

I reckon it sounds like a REALLY good idea to eat before leaving home in this situation, and I will strongly concider taking some 'good' food with me on Christmas Day.

Maggie :)

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   5 Members, 0 Anonymous, 1,051 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics