2 2
Nino

I'm waiting to get a biopsy, have questions about cancers.

Rate this topic

Recommended Posts

Posted (edited)

Hello Everyone!

   I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done.

   The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious.

    Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good.

    She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.

Edited by Nino
Fixing timeline error

Share this post


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


Welcome. The biopsies they are taking are going to be of your small intestine lining. Having celiac destroys your villi. Those are microscopic hair like things that help you absorb nutrients. They grow back once you have been gluten free for a bit. While celiac can make us have a stronger tendency to certain cancers and other autoimmune issues that doesn't happen to everyone.  I was undiagnosed for over 40 years and never developed any cancers, thankfully.  From what I have read after 5 years or so on the diet your chances of developing a celiac related cancer go down to about that of folks that don't have celiac.

Do read the Newbie 101 thread at the top of the Coping section. It has a lot of info for you on what you need to do to keep yourself safe.

Do keep eating gluten until all celiac related testing is over. If you have positive blood work chances are you do have celiac. In some instances the biopsies can come back a false negative so do go on the diet strictly after celiac related testing is done for at least 6 months then recheck to see if your anitibodies have gone down.

I hope you heal quickly and feel free to ask any questions needed. You have found a great place for info and support.

Share this post


Link to post
Share on other sites
5 hours ago, Nino said:

Hello Everyone!

   I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done.

   The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious.

    Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good.

    She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.

It is quite rare and those that do get it are most often much later in their lives. If you had lymphoma you would be having really bad night sweats, swollen glands, etc. Pretty sure it would have shone up in screenings already also. Your bigger concerns would be with further damage to your intestines, and other diseases developing. Mine was ignored til my 20s and I had developed Ulcerative colitis, and a TON of food intolerance and allergies issues....like allergies to corn, whey, lactose intolerance, soy, peanuts, and various other intolerance issues. I even get rolling ones that come and go. It effected my immunue system where it would attack my brain and neverous system when exposed causing brain damage and nerve damage (this is a rare reaction called gluten ataxia). I thought I was going insane and running a bucket list as my mind was breaking. Most of the damage and insanity stopped on a gluten free diet for the past 5 years with many intolerance issues going away.

I hear you on the lymphoma thing, I was having bad night sweats, fevers, and all kinds of other issues which seemd to have been related to either my UC or a infection I got.

Since you are new I might suggest looking at the newbie 101 section....there is a HUGE learning curve to this disease as gluten residue smaller then germs can set you off....and you can not kill gluten with bleach as it is a protein like blood.  SO there is also a clean out phase of cleaning out your house/kitchen to make it safe, and a whole phase of finding safe foods/ingredients you trust.
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

Share this post


Link to post
Share on other sites
6 hours ago, Ennis_TX said:

It is quite rare and those that do get it are most often much later in their lives. If you had lymphoma you would be having really bad night sweats, swollen glands, etc. Pretty sure it would have shone up in screenings already also. Your bigger concerns would be with further damage to your intestines, and other diseases developing. Mine was ignored til my 20s and I had developed Ulcerative colitis, and a TON of food intolerance and allergies issues....like allergies to corn, whey, lactose intolerance, soy, peanuts, and various other intolerance issues. I even get rolling ones that come and go. It effected my immunue system where it would attack my brain and neverous system when exposed causing brain damage and nerve damage (this is a rare reaction called gluten ataxia). I thought I was going insane and running a bucket list as my mind was breaking. Most of the damage and insanity stopped on a gluten free diet for the past 5 years with many intolerance issues going away.

I hear you on the lymphoma thing, I was having bad night sweats, fevers, and all kinds of other issues which seemd to have been related to either my UC or a infection I got.

Since you are new I might suggest looking at the newbie 101 section....there is a HUGE learning curve to this disease as gluten residue smaller then germs can set you off....and you can not kill gluten with bleach as it is a protein like blood.  SO there is also a clean out phase of cleaning out your house/kitchen to make it safe, and a whole phase of finding safe foods/ingredients you trust.
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

Thank you for replying!

I'm sorry you didn't get diagnosed until later on, going through all of that must have been terrible.  I'm lucky that it's getting caught so early for me, at least I think it is. I haven't had health issues in these past years, never even getting sick. The only other thing was getting my tonsils removed when I was young (they were incredibly scarred) and was fine after that.

Then in 2016 I had my gallbladder problems around my 19th birthday (in April), had my gallbladder removed in November of that year. I was fine afterwards! Just some occasional abdominal pain and weight loss. My friend also had her gallbladder removed and she too lost weight, so I assumed it was normal. The abdominal pain was thought to be IBS at the worst. Learning I have Celiac Disease is a big surprise, but it also explains quite a bit.

I have been reading up on Celiac Disease and I'm glad I've found this forum. I didn't know that you couldn't kill gluten with bleach, so thanks for the heads up!

I don't want to cause further damage to my body and even if it is hard, I'd like to stop taking gluten now. However, I know it's needed to keep taking it until I get my biopsy done. I don't like the thought of putting more and more poison into my system.

Share this post


Link to post
Share on other sites

Your doc tells you that you have celiac and then in the same breath tells you it causes cancer? Omg! Really sorry your doc has a really poor method of conveying information. 

Share this post


Link to post
Share on other sites
Ads by Google:


1 hour ago, Victoria1234 said:

Your doc tells you that you have celiac and then in the same breath tells you it causes cancer? Omg! Really sorry your doc has a really poor method of conveying information. 

Yeah she did! She also made it out to be that it wasn't as bad as IBS. She said my symptoms would go away if I stopped having gluten, but with IBS I'd have it for life. She really did not convey it very well, I miss my old doctor already.

Share this post


Link to post
Share on other sites
2 hours ago, Nino said:

Yeah she did! She also made it out to be that it wasn't as bad as IBS. She said my symptoms would go away if I stopped having gluten, but with IBS I'd have it for life. She really did not convey it very well, I miss my old doctor already.

While the symtoms will go away on a gluten free diet....the disease is life time no gluten and once you clean out you become more sensitive to it. SO while you finishing off testing you might as well enjoy what you can of your family gluten foods cause soon you will have to dump them for life. >.<  God I miss monkey bread, and a good ole monte cristo (I found how to make the monte gluten-free...but a $15-20 3 layer deep fried gluten free sandwich is no longer appetizing at that price) >.< I perfected a lot of recreations for cravings and become a gluten free chef and started a bakery because of this disease lol. I think the whole cancer thing was to scare you it is serious.....and it can cause that. But I think it was a shock and awe tactic to get you to change your diet and not blow it off.....we do the same thing on the forums to scare those people that try to blow off cheating. It is best for you to assume you will get it if you do not stop gluten that way you stay on the wagon.

  • Upvote 1

Share this post


Link to post
Share on other sites
8 minutes ago, Ennis_TX said:

While the symtoms will go away on a gluten free diet....the disease is life time no gluten and once you clean out you become more sensitive to it. SO while you finishing off testing you might as well enjoy what you can of your family gluten foods cause soon you will have to dump them for life. >.<  God I miss monkey bread, and a good ole monte cristo (I found how to make the monte gluten-free...but a $15-20 3 layer deep fried gluten free sandwich is no longer appetizing at that price) >.< I perfected a lot of recreations for cravings and become a gluten free chef and started a bakery because of this disease lol. I think the whole cancer thing was to scare you it is serious.....and it can cause that. But I think it was a shock and awe tactic to get you to change your diet and not blow it off.....we do the same thing on the forums to scare those people that try to blow off cheating. It is best for you to assume you will get it if you do not stop gluten that way you stay on the wagon.

That's amazing that you started a gluten-free bakery! I have one by my house and walk my dog by it everyday. I know the disease is serious, and would get off gluten now if I could! I've never had much of a sweet tooth, but most of my diet has been gluten centered. That will be a big and tough change. I worry about getting the proper nutrients after quitting it. I hope I'll be able to see a dietician who knows about this disease. I also really need to learn how to be a better cook!

Share this post


Link to post
Share on other sites
5 minutes ago, Nino said:

That's amazing that you started a gluten-free bakery! I have one by my house and walk my dog by it everyday. I know the disease is serious, and would get off gluten now if I could! I've never had much of a sweet tooth, but most of my diet has been gluten centered. That will be a big and tough change. I worry about getting the proper nutrients after quitting it. I hope I'll be able to see a dietician who knows about this disease. I also really need to learn how to be a better cook!

I quickly found omelettes to be one of my staples, fats, protein, veggies, and I put some coconut flour in to thicken it up along with one of my keto baked good or breads. I do not do carbs personally but a ketogenic diet. So omelette and a grain free nut flour based toast, roll, or muffin with nut butter or avocado on it. Getting a microwave omelette maker when I had a shared house made it easy to cook without contamination issues. I got my own mixing bowl different color, a hand blender and would blend my eggs, milk, coconut flour, nutritional yeast up and pour it in the maker sprinkling in my filling and cooking it up then topping in stuff like homemade salsa, taco sauce, or seasoning of choice so I could change the cuisine flavor every day. Makes starting off quite easy, I  also got my own crockpot/ricecooker/steamer combo pot and with a liner for good measure I would make big ole crock pots of soups in it with fresh veggies etc....transfer the whole thing to the fridge and eat off it for days.

Sirously first thing to invest in when changing, Microwave cook ware, crockpot, serving spoon, spatula, hand blender, mixing bowel and a roll of butcher/freezer paper for laying out for a clean prep surface (also makes clean up a breeze as you just toss the paper)

Share this post


Link to post
Share on other sites
1 minute ago, Ennis_TX said:

I quickly found omelettes to be one of my staples, fats, protein, veggies, and I put some coconut flour in to thicken it up along with one of my keto baked good or breads. I do not do carbs personally but a ketogenic diet. So omelette and a grain free nut flour based toast, roll, or muffin with nut butter or avocado on it. Getting a microwave omelette maker when I had a shared house made it easy to cook without contamination issues. I got my own mixing bowl different color, a hand blender and would blend my eggs, milk, coconut flour, nutritional yeast up and pour it in the maker sprinkling in my filling and cooking it up then topping in stuff like homemade salsa, taco sauce, or seasoning of choice so I could change the cuisine flavor every day. Makes starting off quite easy, I  also got my own crockpot/ricecooker/steamer combo pot and with a liner for good measure I would make big ole crock pots of soups in it with fresh veggies etc....transfer the whole thing to the fridge and eat off it for days.

Sirously first thing to invest in when changing, Microwave cook ware, crockpot, serving spoon, spatula, hand blender, mixing bowel and a roll of butcher/freezer paper for laying out for a clean prep surface (also makes clean up a breeze as you just toss the paper)

Thank you for all of the tips, I really appreciate it! I've read that even non-glutenous grains (even ones who haven't been cross-contaminated) can be harmful to someone with Celiac's Disease. Is that true? Or is it just a case by case bases?

Share this post


Link to post
Share on other sites


Ads by Google:


You just need to worry about gluten found in wheat, rye and barley.   Oats are naturally gluten free, but are often contaminated in the field, transport, or factory.  Look for “gluten free” oats.   Some celiacs react to even gluten free oats, but that is not common.  It is one reason, experts recommend avoiding oats for a few months before adding them into your diet.  

You might have some intolerances to other foods like corn, lactose (dairy) and soy due to a damaged gut.  Some of those intolerances will resolve and some will not.  Best to keep a food journal to help identify them.  

Share this post


Link to post
Share on other sites
Posted (edited)
6 hours ago, Nino said:

 

 

6 hours ago, Nino said:

symptoms would go away if I stopped having gluten, but with IBS I'd have it for life. She really did not convey it very well, I miss my old doctor already.

Hmm celiac is for life too and symptoms often last longer than gluten just clearing the gi tract- many of us can all atest to that. With gi issues it's kind of would you rather be shot or stabbed (umm neither ) As Ennis shared a delayed diagnosis often just adds more gi issues to the celiac party. 

As for symptoms leaving the system when you stop eating gluten -often not. I had two Dr tell my daughter and I this recently (as she is going through issues currently) I had to bite my tongue really hard tell them I got worse after my challenge with additional intolerances and ataxia etc. I kept it short and calm and grabbed the documents I needed to get her to the next specialist -gi.

i had to say to my daughter you know the damage lasts longer than the food from viewing me the past 14 months she said "yea mom" . I said they don't know sweetie unless they are celiac/ NCGS themselves or live with one or are a celiac specialist, they just really don't know and don't want to know. 

I hope my daughter's gi as yours is talented and wise so that you and she are limited from some of our experiences.

3 hours ago, Ennis_TX said:

But I think it was a shock and awe tactic to get you to change your diet and not blow it off.....

Agreed. We have quite a few gi issues in my family over generations. Stomach , colon cancers, celiac, NCGS, removed gall bladders, appendixs.  it is my cousin, myself, and my children revealing the celiac piece. In our family / generations most cancers showed up on blood work testing . one lucky member had it show up on blood work when she had no symptoms the cancer was confined, isolated and removed. She has been well since. Ironically I was sent for colonoscopies early but kept trying to convey my issues relate to the immune system 

I was diagnosed IBS 20 plus years before my diagnosis 2016/2017. I struggled to get them to test my kids while gluten was still in my home . They missed that window and now my daughter is having issues since she was "clear " to eat gluten outside the home.

I am glad you found us and your Dr at least ran the panel perhaps she herself has a learning curve regarding celiac as well. For all I know my kids maybe our pediatricians first celiac/ NCGS family. Or we maybe the first celiac/ NCGS family or the first not to "fit" in the box.

good luck to you

Edited by Awol cast iron stomach
Autocorrect incorrect

Share this post


Link to post
Share on other sites
1 hour ago, cyclinglady said:

You just need to worry about gluten found in wheat, rye and barley.   Oats are naturally gluten free, but are often contaminated in the field, transport, or factory.  Look for “gluten free” oats.   Some celiacs react to even gluten free oats, but that is not common.  It is one reason, experts recommend avoiding oats for a few months before adding them into your diet.  

You might have some intolerances to other foods like corn, lactose (dairy) and soy due to a damaged gut.  Some of those intolerances will resolve and some will not.  Best to keep a food journal to help identify them.  

Thank you very much! I hope my case was just caught in the earlier stages (if there is any) and I'll hopefully be tolerant with those other foods you mentioned. Keeping a food journal sounds like a great idea! I'll keep it in mind.

Share this post


Link to post
Share on other sites
51 minutes ago, Awol cast iron stomach said:

 

Hmm celiac is for life too and symptoms often last longer than gluten just clearing the gi tract- many of us can all atest to that. With gi issues it's kind of would you rather be shot or stabbed (umm neither ) As Ennis shared a delayed diagnosis often just adds more gi issues to the celiac party. 

As for symptoms leaving the system when you stop eating gluten -often not. I had two Dr tell my daughter and I this recently (as she is going through issues currently) I had to bite my tongue really hard tell them I got worse after my challenge with additional intolerances and ataxia etc. I kept it short and calm and grabbed the documents I needed to get her to the next specialist -gi.

i had to say to my daughter you know the damage lasts longer than the food from viewing me the past 14 months she said "yea mom" . I said they don't know sweetie unless they are celiac/ NCGS themselves or live with one or are a celiac specialist, they just really don't know and don't want to know. 

I hope my daughter's gi as yours is talented and wise so that you and she are limited from some of our experiences.

Agreed. We have quite a few gi issues in my family over generations. Stomach , colon cancers, celiac, NCGS, removed gall bladders, appendixs.  it is my cousin, myself, and my children revealing the celiac piece. In our family / generations most cancers showed up on blood work testing . one lucky member had it show up on blood work when she had no symptoms the cancer was confined, isolated and removed. She has been well since. Ironically I was sent for colonoscopies early but kept trying to convey my issues relate to the immune system 

I was diagnosed IBS 20 plus years before my diagnosis 2016/2017. I struggled to get them to test my kids while gluten was still in my home . They missed that window and now my daughter is having issues since she was "clear " to eat gluten outside the home.

I am glad you found us and your Dr at least ran the panel perhaps she herself has a learning curve regarding celiac as well. For all I know my kids maybe our pediatricians first celiac/ NCGS family. Or we maybe the first celiac/ NCGS family or the first not to "fit" in the box.

good luck to you

I'm sorry to hear about your experience, I hope your daughter and I recover to be very healthy! My current doctor was not the one who issued the testing, that was my old one who recently retired. It seems my new one isn't as experienced, or that she didn't have enough time to tell me all of the details.

It seems that many of people who have had more complications due to Celiac Disease had not been diagnosed quickly. Maybe testing is getting better so that doesn't happen again. I feel awful for everyone who has had to suffer more! Before I was diagnosed via blood work, I didn't even know such a disease existed! We all have to rely on doctor's knowledge and testing, because most of us don't even know that there is something wrong with us. Like I did! I wish there was more awareness on the subject, I plan on looking into spreading it one day.

Share this post


Link to post
Share on other sites
Quote

It seems that many of people who have had more complications due to Celiac Disease had not been diagnosed quickly. Maybe testing is getting better so that doesn't happen again.

Sometimes I wonder if there isn't an age bias, meaning that doctors associate celiac disease with younger patients and are far more skeptical of the possibility of adults, especially middle aged and elderly adults, having the condition. And they are therefore less likely to order tests for it. I know of entire clinics that have not ordered one celiac test.

Share this post


Link to post
Share on other sites
On 1/7/2018 at 8:59 AM, plumbago said:

Sometimes I wonder if there isn't an age bias, meaning that doctors associate celiac disease with younger patients and are far more skeptical of the possibility of adults, especially middle aged and elderly adults, having the condition. And they are therefore less likely to order tests for it. I know of entire clinics that have not ordered one celiac test.

Wow! I suppose that is a possibility, no wonder so many people have suffered so long without a diagnostic! It seems I'll be getting my biopsy on Friday due to someone cancelling. I'm quite nervous now, everything hasn't really sunk in too deep yet! I feel a lot better due to everyone's kind words though.

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
2 2

  • Who's Online   6 Members, 0 Anonymous, 975 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