0
Suzn14806

Grieving

Rate this topic

Recommended Posts

Last night I went grocery shopping. I have only been diagnosed for four weeks but I have been diligent in researching and reading every book written on celiac disease. I have tried to be optimistic and upbeat about the "challenge" of learning to live with a whole new lifestyle. But as I was going from aisle to aisle I found myself growing sadder and sadder. Not a conscious thing but just growing quiet and sad.

I picked up the Jan 17th Woman's Day magazine to find the article about celiac disease and when I got home I nearly fell out of my chair when I read what the woman said about grieving for her old way of eating. I realized that is exactly what I was dealing with.

I am honestly trying to embrace this new way of living and looking at it as saving my life and not a curse but I have to admit that at the same time I am grieving over not stopping at a fast food place for a quick burger or ordering pizza cause I am too busy and everyone is hungry. All of the conveniences and good tastes that I took for granted. I often say that rice flour and bean flours are an acquired taste and I am trying hard to acquire it!! :-)

Has anyone else experienced this? If so, how long do you think it takes to adjust and let go of what is gone? I appreciate all the information and support that I get from this forum. Thank you and God bless you!!

Share this post


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


Guest shar4

Suzn, I know how you feel. I went gluten-free on Halloween after biopsy confirmed celiac disease. I was told that the endoscopy was not good at all. I had pretty much lived on pretzels for longer than I care to admit. What made me stop in my tracks was a statistic that I found on the internet that said that people with celiac disease have a 40% higher incidence of colon cancer than non-celiac disease people.

Admitedly, I have an almost irrational fear of cancer, my mother's entire family died from cancer of one form or another, and she has had breast cancer AND ovarian cancer. But. I love carbs. I cannot say it any other way. I love them. :(

Since going gluten-free, I have gained about 10 pounds which aggravates me to no end, but I finally figured out that my body must be craving something, and so I have decided not to try to diet toooo much right now.

I grieve too, but I'm trying to enjoy the scavenger hunt for tasty gluten-free foods.

Anyway, I'm not sure that made any sense at all, but just remember that the board is here for you!!!

Good luck and God bless.

Sharon B)

Share this post


Link to post
Share on other sites

To a degree, yeah, I know what you're saying. My personal history of loss means that the answer I'd give to "how long it takes" is totally useless for ya :-) but I can say, don't forget that grieving is cyclical. Just because you go through the process once, doesn't mean that some other milestone in your life won't trigger it again. I don't know your age or family situation, but if you don't have kids yet, and have one who's not celiac disease who gets a birthday cake for his/her first birthday (ok, for the guests, really ;-) and a play toy), you may grieve again over what you cannot share with your children. (That's just one example.) But it's a loss, and, like any other loss of something that has been taken for granted, it's HARD and unexpected.

(For the carb lovers out there, a heads up if you haven't tried it - millet! Bob's Red Mill ELISA tests theirs as being gluten free, and I toasted/popped and cooked some the other night. MMMMmmm! Tasty! Kinda like brown rice, kinda like couscous, and better than both.)

Share this post


Link to post
Share on other sites
Guest shar4

Thanks, I'll have to try the millet. i did have some millet bagels,and they were just plain nasty, <_< so I've been experimenting with Rice, potatoe, and buckwheat flours. There is a health food store nearby where they carry all sorts of these things, but I didn't want to get a whole pantry full of stuff that was yukky. I've been seeing what ya'll like and been going from there.

thanks again

sharon

Share this post


Link to post
Share on other sites

just to note, I mean whole millet - not millet flour. cook up the grains (per instructions) just like rice.

Share this post


Link to post
Share on other sites
Ads by Google:


:huh: Dear Suzn, I grieve frequently for my past life. I am a grandmother and was diagnosed March 2002. It is hard when the family gets together. I want each of them to be tested but they tell me that they don't want to change their ways. I know that I can shop at a regular grocery store and be just fine. However, they see things differently. Each celebration turns into a little struggle with myself. I go prepared and don't vary the diet. However, everyone becomes uncomfortable and I feel bad for making them even think about such things. There are a whole lot of emotions tied up in food and right now I don't have time to sort them all out. We just do the best we can from day to day. I know that depression is something that is rampant among Celiacs so I just chalk a lot of it up to that. Still, I do relate. Yes, it happens over and over again but it gets easier with time. I now know why I want to live and how I can keep on doing it God willing. I have good friends and enjoy events in my family's lives. So just as anything, if you practice enough, you will get better. Lots of love, Royann

Share this post


Link to post
Share on other sites

Hi,

I found out a year ago this month, it is a roller coaster ride at first, I also experienced sad shopping days and still do at times. if you make a list of items you need and don't peruze the pasta, cracker cookie isles it will make it alot easier,

Follow your list and get in and out as quickly as possible it makes it less depressing.

May I suggest making a list of all the things you CAN eat rather than focusing on what you can't you'll be amazed how many things are on that list!!!.

Glutensolutions.com has great foods and pastas, the shars crackers, bread sticks, cookies are awesome. When you are cooking the pasta start with cold water and a palmful of kosher salt, cook the pasta as directed and as soon as it is in the collinder draining run under cold water, you and who ever you are serving can't tell the difference, if you are craving egg noodles, which I was, glutano taggetelle, so good, I did gain weight at first, but just remember portion, moderation. Taste a little of everything. Do you have good support system?

Hope you are doing well, remember all of this is for your good health!

Judith

Share this post


Link to post
Share on other sites

Boy, can I relate. I have only been on this diet one week, and I feel like I'm in the beginning of a grieving process. I, too, read that article last night and immediately identified with her in her grieving process.

I woke up several times this week and thought "its all a joke right? I mean, come on, gluten? Who ever heard of such a thing! This is ridiculous!" but then I walked into my kitchen, looked all all the new gluten free items I bought, and was snapped back into reality.

I think its healthy to go through a grieving process, esp if food is a big part of your life. Food is linked to so many things to me, and its hard to seperate those thoughts... Like food=time with friends. Food=holidays. Food=family. Food=romantic evenings with hubby. Etc. I have to change that mindset, somehow... Amercians just get together over food all the time!!

I found one of the best things I did was send out a mass email to friends and family explaining Celiac and what it meant. I have received nothing but encouragement and curious questions since. I also wanted to educate more people about it. I am confident my family and firends now know the facts and will make situations re: food easier for me in the future.

You're not alone! =) Aimee

Share this post


Link to post
Share on other sites

Suzn14806 and All,

When I read that article I was so glad that it mentioned grieving. I recommended the article to several family members so that they could get an idea of how it feels (emotionally). I often think that the emotional aspects are the hardest at times after diagnosis. I'm very glad that I am no longer sick, I feel great physically!--but I get very frustrated and miss the food and just being able to eat without having to think about it or draw attention to myself. Often, I want the ease of being able to just eat again. At other times, I want to be able to just enjoy the mystery of trying a new food without having to read and reread labels or quiz the waitperson and chef.

As time goes on it does get easier, though I agree that frustrating/grieving situations do return at times. I've found that keeping lots of things that I enjoy and can eat around help. Also many gluten-free mixes taste awesome (better then the frozen stuff). At first I tried to figure out my own recipes, yuck :( . But then I used mixes, yummy, and now I'm starting to bake on my own using gluten-free cookbooks and with the knowledge of gluten-free flours from the mixes. There are some things that I (Celiac) and my husband (not a Celiac) like better gluten-free--like Spritz cookies and pie crust. The support of this board and other Celiacs that I meet, really help. Hold on, it will get better.

Take Care!!

Share this post


Link to post
Share on other sites

B) Hi- i read the posts and i agree, my family is all italian and i thank god every day that i married into a latin family, or else my cooking would really be difficult. i want to see if any of you have a store called trader joe's nearby, it is all over california and in a few other states, as far as i know they will be national within two years. if it weren't for that store i would have gone bankrupt / and or insane. My son and husband were diagnosed 6 months ago, and trader joe's has a huge selection of gluten free, if i supplement with an occasional trip for flours and pastas to whole foods i'm pretty much set. My family life revolves around food, really good food, too, and i know how wierd it feels to upset a family gathering, so i've taken to bringing more food than we will need, and then there is no feeling of deprivation (chocolate or otherwise)

brooke

Share this post


Link to post
Share on other sites


Ads by Google:


Guest PattyAnne

I was diagnosed with celiac disease in May '97 and you go on a roller coaster ride of emotions frequently. You do learn to live with it and it does get somewhat easier as time goes on. But it is difficult when most of the world looks at you like you have 2 heads when you try to explain celiac disease to them. My problem is that I seem to be ultra sensitive and I get sick everytime I eat any where but my own home. Doesn't seem to matter to what lengths my familygoes to to try to keep me from being contaminated. I have given up on restaurants. No matter how understanding the staff seems to be with my plight, I get sick. I even had to give up my wonderful nursing career because I was constantly being contaminated helping my patients with there meals and I became severely anemic. I thank God for all that I do have and can do, but I'd sure like to be able to go have lunch with my friends again.

Share this post


Link to post
Share on other sites

Hi - I was diagnosed in 9/03 and I definately went through a typical grieving period! When I went to the grocery store the first time I was also in tears. I was grieving for my old way of life where I could eat whenever and whatever I wanted. My neighbor, who saw me at the bus stop with my kids, told me to "get over it - at least you don't have cancer" - which I found to be SO uncaring and nasty. (yes, she is right, but that's not what I needed from her at that time). Anyway, I still have some times when I feel sad that I can't eat certain foods, but I've found other foods that are delicious, and I try to have some of those around when others in my family are eating what I miss most. I feel safe in my own home where I am in control of what I eat - and I've just recently been eating out more in restaurants - which can be challenging. The hardest part, for me, is visiting other people's homes for meals - I don't want to be a huge imposition, but I have to be incredibly detailed. I'm used to reading labels carefully, for we keep a Kosher home, so that part isn't so bad for me. I find it's good to bring your cell phone to the grocery store and call the manufacturer's 800 number right from the grocery aisle if you aren't sure about a product's ingredients.

By the way, my doctors were not particularly helpful after my diagnosis - thank God for the internet - the information I got from this site was a lifesaver. (Oh, and by the way, I am a physician myself!)

This is my first time posting to a message board! Hope it helps!

Sara

Share this post


Link to post
Share on other sites

I believe that we definately NEED a grieving process. You have to mourn your past lifestyle so you can begin the new one. You will have days when you feel like crying when you see a piece of pizza or smell a doughnut. I still have those days when it is hard. I TOTALLY avoid the bakery section of the grocery store. I hate going into those isles and smelling the good foods.

I remember right after my diagnosis. My dad was going to order a pizza for the rest of the family, and I threw a temper tantrum like a two year old. I thought it was sooo insensitive of him to even THINK of ordering pizza when I was around. I was having a major craving for pizza at the time! ha I'm sure that had something to do with it.

We just have to mourn for the things we miss, and try to find a way of making them at home with our own ingredients or finding a new substitute for your vice. We are much healthier for our diagnosis. I know some days when you see that sandwich or doughnut it is really hard to remember that though!! :P

Keep pushing forward and keep a positive attitude.

-Jessica :rolleyes:

Share this post


Link to post
Share on other sites

Hi I thought I was celiac but for me its a severe allergy to gluten and yeast.

Took me 9 months to see a GI specialist and by the time he did testing

and biopsy I was gluten-free for easily more than 6 months. Anyways

they think I developed an autoimmune response to wheat. I enjoyed

reading the grieving posts, I used to consume tons of cookies, cakes you

name it...being thin I never dieted in my life. At times I panic as my

gluten-free diet is so restrictive, but the trick I use is to remember when

I was my sickest. When I had this horrible rash all over (for months on

end), the pain, the GI troubles even gastro reflux and weight loss. I have

gained back almost 10 lbs, no GI troubles and the rash is almost gone. I

thought I was dying and no one could figure it out. That snaps me back

as I remind myself how bad it was. I have continually the odd time retried

eating gluten as it was a nightmare I couldn't believe it. Each time I got

sick, very very ill. Celiac or not I may never no as the testing came a year after being gluten-free but I still grieve constantly then try and just think of the rash. I can

finally wear pantyhose s first in a year. No slice of chocolate cake is worth another year of

the rash for me. This is my first post, hope its helpful.

Share this post


Link to post
Share on other sites

Hi, I am also diagnosed with a wheat allergy and my test for the celiac disease gene

was negative. I am convinced that I am positive. I don't want to take the gluten

challenge to prove a point, because I NEVER WANT TO BE THAT SICK AGAIN.

I will consider having the enterolab testing later. My symptoms began after thyroid

surgery for a benign nodule in 2000. My eyes began to burn and I went from Dr. to

Dr., everyone said it was just "allergies", I was tested for everything but they said it was typically environmental issue..trees, grass, mold,ragweed. The skin test

for wheat and other foods were Neg. I even insisted that we buy a new refrigerator

because i had read that old refrig can leak and cause a lot of "allergy-like" problems. I had a series of allergy shots, antihistamines,sinus infections, lots of antibiotics which I think led to my diagnosis of IBS. In March 03 I began to have

a lot of GI problems, nausa, diarrhea, spots and burning in my eyes, lots of anxiety about driving and being around a lot of people. I never left my house

until after I had eaten and had at least one bowel movement. I was afraid to "pass"

cars on a 4 way highway because I was afraid I would have a "spell" as I came to call them. Luckily I have a very supportive husband who has been with me every

step of the way.I remember he had to practically had to carry me in the hospital

for all of the test because I was so sick at that time. All of my tests were Neg except for severe reflux. My GI doc said it was IBS triggered by fats and I was prescibed fiber and Nexium. By the time Oct rolled around I was better but still

sick with almost constant pain in my right side nausea, bad taste in my mouth, etc.

The GI doctor then suspected Celiac so I was tested, positive for wheat allergy,

but Neg for celiac disease. I started the gluten-free diet on Nov 03 and have been doing better, however milk seemed to bother me so I am lactose free, but I do seem to tolerate

goat's milk which I use occaisonally.

The only thing about this diet is the incovenience of having to plan every meal

making sure you have all of the ingredients, and the price.I made a chocolate cake the other night and I was very pleased with the taste. I thank God every day

that I am getting better every day and can go shopping alone without fear!

Share this post


Link to post
Share on other sites

blackpacer,

Did your doctor perform a biopsy on your rash to determine whether it was dermatitis herpetiformis? DH does last for months, and celiac disease IS an autoimmune reaction to wheat (gluten)! You may want to consider ordering a stool test from Enterolab, which MAY still come back positive even though you have been gluten-free for several months (unlike blood tests, which become negative very soon after going gluten-free). Enterolab also offers gene testing. It's wonderful that you have figured out that gluten is responsible for your troubles, but I can certainly understand wanting a concrete answer in a situation as life-altering as this! I hope this information is helpful and that you are doing well!

Share this post


Link to post
Share on other sites

Judy I am so sorry you had to go through what you did, and your story is very similar to mine. Interestingly enough I was diagnosed with mold/dust/ragweed etc allergies but always was able to eat foods like bread etc. Then in Dec 2002 I saw

a specialist for suspected fibroylagia and he prescribed folic acid as I was

deficient in this. I got ill, I kept saying I am allergic to it. The md said not possible. So I stopped taking it and specialist says eats more wheat etc big

sources of folic acid...got deathly ill, itchy, reflux etc. I happened to one day

pick up a bag of flour as I even started home baking and my hand was covered in hives. I suspected wheat allergy. To make this short the doc and GI suspect

now that being very allergic to molds/yeasts and the folic acid is a B vitamin

derived from (you guessed it) molds/yeast I suffered a huge autoimmune reaction

and newly developed a wheat allergy. You cannot get anything packaged that

is not enriched with B vitamins (ie, sourced from yeasts/molds) nor can you

get unenriched flour in wheat. So now I bake daily cornflour muffins and they are my carbs. Like you stopping wheat/yeasts I don't have reflux, don't itch from

head to toe and have don't have that deathly ill feeling. Also people need to be aware that if they have certain allergies they can potentially react to foods from the same botanical food group. ie, chamoile tea is related to the plant family that ragweed is from! I found a great allergy site that talks about "oral allergy syndrome". Strangely enough now that I am off wheat my iron levels and folic acid levels are normal for the first time in a long time. Your spells might have also been anxiety attacks, when I had the reflux I also had them happen at the same time.

Share this post


Link to post
Share on other sites

Blackpacer, thanks for the info. I knew about the chamomile tea, but hadn't heard about the B vitamin. This is a really dumb question but, if I am allergic

to mold, which I am, does that mean I am also allergic to yeast??If this is true then that explains a lot of my symptoms that I still have after being gluten-free for 2 months. Would you mind telling me where to find the site about oral allergy syndrome. I love this site because I learn something new every day..

Share this post


Link to post
Share on other sites

That is really interesting about the B vitamins. I have a lot of allergies. Severe for house dust and Alfalfa, minor for almost everything else on the list. I recently drank some tea, Celestial Seasonings Tension Tamer with B vitamins, and felt very sick within an hour. I know I had been gluten-free that day, so it sort of threw me off to try to figure out what made me feel bad. I don't take multi-vitamins, since they also make me feel ill. I won't take supplements unless I know that I am deficient, since they usually make me sicker. I don't ususally eat yeast breads, but a week ago I made a loaf and it made me very sick. I wonder if there is a way of knowing for sure if yeast/molds/B vitamins might be bothering me. Since trying to eliminate all of them would just make my dietary restrictions even more difficult. I already can't have gluten, dairy, or soy.

Mariann :(

Share this post


Link to post
Share on other sites

I have been taking a multivitamin but i don't think i should continue.

I am so furious with my allergist for not passing on this info, I really

don't think my GI doc will be up on this. I wish I knew where to go for

help because I have so many allergies. I keep telling myself that this

too will pass, and I try to focus on getting and feeling well again. God bless the people on this board, we are all in this together..

Share this post


Link to post
Share on other sites


Ads by Google:


I was diagnosed 3 years ago last month. It was very overwhelming at first but I went gluten-free 100% (as far as I know) immediately. I didn't grieve until probably a year later. I was so sick before my diagnosis that it really was a relief to find out what was wrong...and that I wasn't dying of cancer.

Two of my three daughters have since been diagnosed as well as my mother. I CAN'T let this get me down because my kids (16 & 20) don't want to see me struggling. I have to be a good role model for them.

However, I do admit there is one situation that always brings me to tears. The company I work for promotes 'team' lunches and holiday celebrations that usually involves food. I have to remind the people planning an event, of my dietary restrictions...EVERY TIME! 9 out of 10 times the catered meal does not include even one item that is gluten-free. Salads have croutons and/or dressing is already in the bowl. Is that discrimination in the workplace? If I was dieting as a way to lose weight okay, but I CAN'T eat a little gluten "just this one time".

Most of the time when we all go to lunch I end up having to order a plain green salad with no dressing. And of course this is always a topic of discussion at the table. Sometimes it's hard being different. :blink:

Share this post


Link to post
Share on other sites

Hi there cristie

i have the same problem i dont work but when i go out or have lunch with people i ask for gluten free people look at you as though you have two heads and then say it wont hurt to have something huh they dont know the half of it i just wish one day they would see what it is like i have really bad days where i dont even go out and my hubby says he understands but when we are out he coments on not having the old things we used o have which gets me angry i am so down most of the time if only i say ,.......if only

jacque :(

Share this post


Link to post
Share on other sites

Grieving?!?!?!?

I celebrate! I am now 5 years post diagnosis. I finaly have answers to my lifes physical problems (or some of them at least). I guess that grieving was not part of my process because I already was an expert at maintaing a restricted diet (kosher); this just restricted it more. HOWEVER, I did grieve for the fact that I had transmited the gene/disease to 5 of my 8 children. For this I grieve and feal guilt daily. I rationalize that I am being to hard on myself, but it's tough to send my 5 year old to a pizza birthday party or my 12 year old to a bat mitzvah where she cant eat anything or my 9 year old to a bowling party where he stands out not being able to eat cake. My young ones ask me " when will we get better?", why cant I take medicine to get better like when I had strep throat. I also know the statistics of getting other diseases.... secondary to having c.d. To me these are the real issues.

What would I have done if I would have known that I had a genetic disease prior to having my beatiful children? I don't know! However, while the grieving process is perhaps part of a normal response to finding out one has c.d. it just isn't that bad!! Its no different than going on the atkins diet.... It just is more serious!

Marc

Share this post


Link to post
Share on other sites
Guest aramgard

My responce was like Marc's. I was really joyful that someone had finally figured out what was wrong and the fix was just diet. After 50 years of rashes, unexplained, multiple allergies and then the topper, the gastrointestinal problems, I was ready for a real fix and not medication. Marc, don't beat yourself up so much. I, too, passed the gene on to my children (three girls) and possibly to my great granddaughter. But I as long as we understand our limitations, we can lead a healthy life and so can they. If we sat around worrying about what could have been we'll just be depressed, so all of us need to start putting on a smile and deal with the problems of being Celiac's and just go on with our lives with glee. After all diet is much easier to change that having to take medication for the rest of your life. Shirley

Share this post


Link to post
Share on other sites

There are times I get feeling really sorry for myself when I'm grocery shopping, but it doesn't affect my gluten-free diet because I NEVER want to be SO SICK again! I'm normally not a very strong willed person (ie tried and failed to quit smoking infinite number of times) but I was curled up fetal position for 2 months in my bed. Life flew by me and when I finally "caught on" and went gluten-free it was such a miraculous and speedy recovery. What had happened though was that I had missed so many events (my nephews wedding, friend's get togethers etc) that I fell out of touch with a lot of people and haven't really got back to where I was. I'm getting better at reading ingredients and my family is so busy that we rarely all sit down together for a meal anyway so it's not too much "in my face".

One thing I find myself thinking a lot is..."If only I'd had that last piece of Pecan Pie BEFORE I went gluten-free. If only I'd had that last strawberry shortcake BEFORE I went gluten-free. It's hard at the cottage because my mother bakes and her pastries are out of this world! She really tries to do some gluten-free stuff for me but of course it isn't quite the same is it?

So I think we all feel a little sorry for ourselves sometimes as we walk down the aisles and try not to notice all the yummy things we can't have, but the idea of the problems that would arise if we were to "err" keeps us on track. I know the comment about cancer seemed mean, but when I think of all the things that could be worse, diabetes, yes...cancer, so many other diseases that can't be simply controlled with diet I guess passing on the gravy isn't so bad after all.....Tagger

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   15 Members, 1 Anonymous, 1,227 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