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katiedeer

I'm sort of terrified. Please help!!!

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I'm  a natural born worrier and I always have been. I was diagnosed with celiacs when I was sixteen years old, and I'm nineteen now(going on twenty) Long story short, I've had my fair share of cheats between these times, not exactly eating gluten every day with every meal but just little things(like a doughnut or a roll or something ridiculous like that). I'm just now regretting all of it and realizing the severity of my disease. I've been going strictly gluten free for a while now, with a couple mess ups, like not knowing there's gluten in certain things(And paying for it later... :wacko:

But now, lately, things have been different. Usually, when I am glutened I have mild cramping, trouble when going to the restroom, mild gas,  and fatigue. But lately I've been experiencing other symptoms(*TMI warning*) Things like extreme abdominal pain(Like I feel like I need to go the bathroom, throw up, and pass out all at once, this also only happens every now and then), weird stomach noises and I'm more gassy than usual, a tight feeling in my stomach/abdomen area, and I've noticed mucus in my stool on one occasion. I've read up on the cancers associated with celiacs and all of the symptoms religiously because I always assume worst case scenario. Should I really be worried? I'm scared that it could be "too late" for me and I could have cancer or have done irreversible damage to my body. I don't know if I'm being silly or not, I feel silly for taking this long to realize I need to be serious about my health and diet. I'm visiting my family doctor by the end of this week about these concerns but I'm worried about what he will say. Any feedback would be so much appreciated. Advice, reassurance, anything to keep me from worrying about this! :unsure:

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2 minutes ago, katiedeer said:

I'm  a natural born worrier and I always have been. I was diagnosed with celiacs when I was sixteen years old, and I'm nineteen now(going on twenty) Long story short, I've had my fair share of cheats between these times, not exactly eating gluten every day with every meal but just little things(like a doughnut or a roll or something ridiculous like that). I'm just now regretting all of it and realizing the severity of my disease. I've been going strictly gluten free for a while now, with a couple mess ups, like not knowing there's gluten in certain things(And paying for it later... :wacko:

But now, lately, things have been different. Usually, when I am glutened I have mild cramping, trouble when going to the restroom, mild gas,  and fatigue. But lately I've been experiencing other symptoms(*TMI warning*) Things like extreme abdominal pain(Like I feel like I need to go the bathroom, throw up, and pass out all at once, this also only happens every now and then), weird stomach noises and I'm more gassy than usual, a tight feeling in my stomach/abdomen area, and I've noticed mucus in my stool on one occasion. I've read up on the cancers associated with celiacs and all of the symptoms religiously because I always assume worst case scenario. Should I really be worried? I'm scared that it could be "too late" for me and I could have cancer or have done irreversible damage to my body. I don't know if I'm being silly or not, I feel silly for taking this long to realize I need to be serious about my health and diet. I'm visiting my family doctor by the end of this week about these concerns but I'm worried about what he will say. Any feedback would be so much appreciated. Advice, reassurance, anything to keep me from worrying about this! :unsure:

The risk for cancer due to untreated celiac disease is really, really low, especially in a young person.  So, no need to worry.  There are long term complications for not complying with the gluten free diet as you have probably googled.  For example,  most likely some bone damage as this is the time in your life you should be building as much bone as possible or developing another autoimmune disease.  

It is good that you made an appointment with your doctor.  Have him run another celiac panel to see where you stand.  Then work at getting those antibodies down over the next year.   Continue to do follow-up testing as the labs can let you know (besides symptoms) if you are consuming gluten.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Celiac disease is like a chameleon.  Symptoms can wax and wane.   I just had anemia when I was diagnosed.  Now, a gluten hit can mean six months of feeling ill.  Gluten is not worth it.  

We are here to help each other, so ask any questions!  

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Thank you so much cyclinglady!! This really soothes some of the anxiety I had about all this. Gluten is definitely not worth all the stress and pain it's caused me. :wacko: Celiac is one of those most challenging things I have ever dealt with, but I love how welcoming the community is. It makes it a lot easier to cope with things. Thanks again!

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5 hours ago, katiedeer said:

I'm  a natural born worrier and I always have been. I was diagnosed with celiacs when I was sixteen years old, and I'm nineteen now(going on twenty) Long story short, I've had my fair share of cheats between these times, not exactly eating gluten every day with every meal but just little things(like a doughnut or a roll or something ridiculous like that). I'm just now regretting all of it and realizing the severity of my disease. I've been going strictly gluten free for a while now, with a couple mess ups, like not knowing there's gluten in certain things(And paying for it later... :wacko:

But now, lately, things have been different. Usually, when I am glutened I have mild cramping, trouble when going to the restroom, mild gas,  and fatigue. But lately I've been experiencing other symptoms(*TMI warning*) Things like extreme abdominal pain(Like I feel like I need to go the bathroom, throw up, and pass out all at once, this also only happens every now and then), weird stomach noises and I'm more gassy than usual, a tight feeling in my stomach/abdomen area, and I've noticed mucus in my stool on one occasion. I've read up on the cancers associated with celiacs and all of the symptoms religiously because I always assume worst case scenario. Should I really be worried? I'm scared that it could be "too late" for me and I could have cancer or have done irreversible damage to my body. I don't know if I'm being silly or not, I feel silly for taking this long to realize I need to be serious about my health and diet. I'm visiting my family doctor by the end of this week about these concerns but I'm worried about what he will say. Any feedback would be so much appreciated. Advice, reassurance, anything to keep me from worrying about this! :unsure:

Symptoms for this disease constantly change, I could go over my story but it would be a few pages. Chances of cancer are low, you probably just got worse reactions now and this is very common, especially as we start to get it out of our system, our body reacts to it coming back in MUCH for violently. Also Cutting it out now is VERY important I was in my early 20s before we got it diagnosed and the damage caused a bunch of other issues...allergies, food intolerance, other AI disease that make it where I can not consume carbs/sugars.....and the obvious things like dairy intolerance etc....got that 10+ years ago.
Point is nip it in the bud now and you have much less to worry about in the future. Here are some links to some foods to make this less daunting PS go whole foods only and treat processed gluten-free foods as treats...the higher starch and sugar ratios in many are not so good for your health lol. I personally am grain free keto.

https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

PS Worry and anxiety go with this disease and will flare up with exposure, this is a combination of nutrient deficiency of B-vitamins, vitamin D, magnesium, etc. Caused by damaged intestines, and in some of us a aspect where our immune system attacks our nervous system and brain. These will cause the anxiety and stress to worsen with brain fog, confusion, and I will admit moments of impending doom feeling. I have to up my anti stress regime with this, and I swear so much by it I doubt I could operate with out it. I use Liquid Health Stress & Energy and Liquid Health Neurological support 1tbsp each 3 times a day. I also dose magnesium to tolerance rotating between Natural Vitality Calm and Doctors Best. The Calm can cause loose stools if you take to much but really helps with the hard stool, constipation issues that come with low magnesium levels (magnesium deficiency can cause constipation). If you want to start magnesium I suggest calm at 1/4 tsp a day then slowly up it over the period of a week or two to the full dose or to tolerance (tolerance refers to it causing loose stools then you dose back)

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Hi Katie,

Welcome to the forum! :)

You've got some good advice already.  You are catching your celiac disease at a young age, so that helps.  You can avoid a lot of problems some others developed from years of eating gluten before finding out we have celiac disease.

I think the first 6 months of eating gluten-free are very important.  It's a chance for the immune cells to go down and the body to start healing after possibly years for damage.  In celiac the immune attack damages the intestinal lining (villi) that absorb nutrients.  That villi lining is very important to our health as we can't properly absorb vitamins and minerals if it is damaged.  We need those nutrients to heal and grow.

Eating a very simple diet is a good way to go for 3 to 6 months.  Avoiding processed foods means you don't have to spend all day reading ingredient labels in the grocery store.  Things like veggies, plain meats, fruit, eggs etc that are whole single ingredient foods are a great way to go.  This means cooking a lot of your own food but that's a good thing to learn anyway.  There's much less chance of getting glutened with whole, unprocessed foods.

Avoiding dairy for several months can help also, and oats should not be eaten until 6 months to a year.  There are some of us that react to oats also.

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7 hours ago, katiedeer said:

Advice, reassurance, anything to keep me from worrying about this!

Hi Katie :)

You've had good advice above from the forum MVP's :P Do follow it, but one further thing, don't be too hard on yourself for past failings. I find the diet hard now, at 16 I think I'd have responded in just the way you have. 19's a good time to get the diet sorted and let your body properly heal in time for an awesome 20s and beyond!

Most of all...

 

keep_calm_and_don__t_panic_by_miss_cupca

 

 

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I have had a very similar experience to yours.  Previously to my celiac disease diagnosis, I had mild abdominal cramping and a little bit of occasional nausea and fatigue, but that was it.  I ended up getting tested for celiac because I also had mucose in my stool which I guess is a sign of inflammation. I have now been gluten free for 2 and a half months and things definitely seem to be getting worse before they get better.   I now have new symptoms similar to the ones you mentioned like lightheadedness, and one episode of passing out,  extreme nausea and fatigue hopefully this is all part of the healing process!

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I was in your same boat when I was diagnosed. Terribly fearful of cancer and all the damage I unknowingly had done. I don’t cheat, but I’m not as good as I need to be at restaurants (I only order off gluten-free menus but I don’t talk to managers like I should, etc) and I eat out once a week with never having symptoms. My main symptom is absolute, complete brain fog. I am truly not the person I used to be. I’ve always had anxiety, so that wasn’t any worse, but I hate to say this about myself but i got “dumb”. It was my first week in nursing school when I was diagnosed. What a great time, huh? I had to stay at school until midnight-2am 4 nights a week just to try to focus and control this brain fog. I used to be smart, quick witted, and very present in the moment. I know life changes, but my life is busy yet very peaceful and I struggle with this daily. I can’t comprehend medical concepts quickly like before and it’s very depressing. I also have a pretty good diet but have weighed 165 (I’m 5’4”) for three years with doing cardio, training for marathons,  etc..nothing gets this weight off (have had thyroid issues since age 7). Anyways. You are not alone. My doctor diagnosed me 5 years ago and told me to stay gluten free and I never saw him again! No follow-ups... I had no clue I had to! Anyways, I have an appointment upcoming as well. 

Best of luck to you ❤️

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Hello,

     I am celiac plus a colon cancer survivor.  Celiac was not a contributor to my diagnosis.  Also, Please don't worry you are very young and honestly colon cancer did not give me any of the symptoms you listed... I mostly just couldn't go at all.  Hodgkins lymphoma has been connected with celiac but we are talking many many many years down the road of not being gluten free.

Stick with your gluten free diet to heal your intestinal lining.  It can take awhile to get the benefits but it does happen.  If you continue to struggle look into dairy, soy or other allergens that could be bothering you.  For  me it is soy.

Good luck and no worrying over things that will most likely never happen but ARE stealing your peace today.

Kathy

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On 1/24/2018 at 1:28 PM, ksymonds84 said:

Hello,

     I am celiac plus a colon cancer survivor.  Celiac was not a contributor to my diagnosis.  Also, Please don't worry you are very young and honestly colon cancer did not give me any of the symptoms you listed... I mostly just couldn't go at all.  Hodgkins lymphoma has been connected with celiac but we are talking many many many years down the road of not being gluten free.

Stick with your gluten free diet to heal your intestinal lining.  It can take awhile to get the benefits but it does happen.  If you continue to struggle look into dairy, soy or other allergens that could be bothering you.  For  me it is soy.

Good luck and no worrying over things that will most likely never happen but ARE stealing your peace today.

Kathy

I am not sure whether I have Celiac Disease, I have a moderate high QIG-IGA 558, the range is up to 356 I think. I am deathly afraid to get a biopsy, but the VA (veterans affairs) is going to give me the TTG test (blood draw). 

I am 37 years old and I have been to the ER many, many, many times. It is to the point where doctors will kick me out of the hospital. If I accidentally eat gluten or wheat my BP sky rockets and my heart rate will race. I will pass gas and then it subsides. 

Now concerning your colon cancer, did you try any natural remedies or was it purely chemotherapy?

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

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19 minutes ago, CeliacDaniel said:

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

HUH? I went grain free/keto to manage AI disease better. I have never heard of developing diabetes because of it. IN FACT many manage their blood sugar and diabetes after by going grain free. They make plenty of grain free, chips, breads, pasta, pizza crust, etc. I even do a grain free keto bread in my bakery that is a hit among diabetics. If you need help finding stuff I will gladly share with you the products I have found.

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Yeah I can't recall where I read that, I did, but just don't remember. But there could be a connection. https://www.glutenfreeliving.com/gluten-free/celiac-disease/celiac-disease-and-diabetes/

 

A company is researching that Celiac Disease could be due to a virus, not surprising as viruses have done a lot to the human body.

 

Even from years ago there is a study concluding that an ancient virus might be responsible for human consciousness https://www.livescience.com/61627-ancient-virus-brain.html it's interesting because we can see the relationship between humans and viruses as well bacteria. Though I'd state that bacteria does less harm than a  virus, yet our bodies are swarming with bacteria.

 

Here is the article concerning Celiac Disease and a virus https://www.npr.org/sections/thesalt/2017/04/08/523002516/when-gluten-is-the-villain-could-a-common-virus-be-the-trigger I think that is the main issue.

 

I take celiact a multivitamin to help combat my Celiac issues.

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3 hours ago, CeliacDaniel said:

I am not sure whether I have Celiac Disease, I have a moderate high QIG-IGA 558, the range is up to 356 I think. I am deathly afraid to get a biopsy, but the VA (veterans affairs) is going to give me the TTG test (blood draw). 

I am 37 years old and I have been to the ER many, many, many times. It is to the point where doctors will kick me out of the hospital. If I accidentally eat gluten or wheat my BP sky rockets and my heart rate will race. I will pass gas and then it subsides. 

Now concerning your colon cancer, did you try any natural remedies or was it purely chemotherapy?

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

Daniel,

Your Immunoglobulin IgA test was high (out of range), but that is just a control test used in celiac testing to determine if ANY IgA tests (like the DGP IgA or TTG IgA) are valid.  Any elevation does not mean you have celiac disease.  You just have an immune system that is on high alert.  It was just one test captured in time and may have been elevated due to your recent  bout with the flu.  That is a good thing...fighting the flu.  

Please get back to the VA for the TTG test to see if the DGP IgA MIGHT have been accurate.  Other things can elevate celiac antibodies tests or it could have been a simple false positive.  An endoscopy might be your best bet if you are seeking a diagnosis.  

Grains do not cause diabetes.  There is a connection between Type 1 diabetes and celiac disease, but there is one with Hashimoto’s and connections to other autoimmune disorders.  Your multiple trips to the ER would have caught a diabetic issue by now, I think.  I would not worry until you know for sure if you have celiac disease.  

 

 

 

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10 hours ago, CeliacDaniel said:

I am not sure whether I have Celiac Disease, I have a moderate high QIG-IGA 558, the range is up to 356 I think. I am deathly afraid to get a biopsy, but the VA (veterans affairs) is going to give me the TTG test (blood draw). 

I am 37 years old and I have been to the ER many, many, many times. It is to the point where doctors will kick me out of the hospital. If I accidentally eat gluten or wheat my BP sky rockets and my heart rate will race. I will pass gas and then it subsides. 

Now concerning your colon cancer, did you try any natural remedies or was it purely chemotherapy?

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

Hello,

     Sorry you are going through a hard time.  Gluten will also give me tons of gas and bloating is horrible!  I don’t  have much experience with diabetes but sounds like by your number you are in normal limits. Haven’t heard of a connection with grains etc.

     I did 14 cycles of FOLFOX chemotherapy but I also used cbd oil that is legal here in CO.  My doctor was cool about it and got me a medicinal license plus cannabis reduced my chemo symptoms tremendously and helped my appetite.  

     Not sure if it was the oil or combination of the two but I shrunk a 6 cm mass in my liver to 3 cm in two months which allowed me to have the liver resection surgery that removed it all. There’s no way I would have gone all natural with my advanced diagnosis.  I trust my oncologist and do whatever he says.  He has me on 4000 dui of vitamin d3 plus one low dose asprin to help from recurrence and especially to keep my breasts safe.

     Please don’t worry about  colon cancer you are very young for that diagnosis unless it’s in your family.  You should have a colonoscopy by 50 or sooner if your doctor suggests it or if in your immediate family.  They told my children to do it by age 40 to catch polyps before they turn into anything because of me.  

     I agree with cyclinglady to get an endoscopy for a celiac diagnosis. You do need to be eating gluten for this to be accurate and if this is too hard remain gluten free to keep your symptoms under control.

     Keep positive and for me I paint (I sell paintings all over the world) and stay busy with my family.  If I have a worrisome thought with health issues especially recurrence, I take a calm breath, allow myself to think about it for a few minutes then STOP and tell myself to live for today no one can predict my future.  Works for me well.

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Immune and Autoimmune responses can be so strange. When I was diagnosed with celiac disease, eating small traces didn't bother me one bit and I had a grace period for getting the hang of the gluten free diet. 2-4 moths later? WHAM - cross contamination could knock me out. It actually got better over time, and a little cross contamination gives me mild symptoms now. Prolonged use of something with cross contamination, however? It grows slowly than hits me like a ton of bricks.

Over time, your antibodies will decrease so your overall reaction should be less. Eating gluten encourages your body to continue producing antibodies, so the reaction will feel stronger over time if your diet isn't celiac-safe. 

Hang in there, and it's always good to check with your doctor just in case. 

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I just got brand new testing in and wanted to know if someone could help me on this one.

Misc Ancillary Test 12~QUEST DIAG

TEST NAME        RESULT

Hla-DQ2            NEGATIVE

Hla-DQ8            NEGATIVE

Hla-DQA1*         01

Hla-DQB1*        0202

Here are the notes, but regardless of what it says is there anything else I should be worried about?

The patient does not have the HLA-DQ variants associated with celiac disease. More than 97% of celiac patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or
both. Genetic counseling as needed.
Masamichi Ito, Ph.D.,FACMG Director, Molecular Genetics Typing performed by PCR and hybridization with sequence specific oligonucleotide probes (SSO) using the FDA-cleared LABType(R) SSO Kit.


Test(s) performed at:
QUEST DIAGNOSTICS CHANTILLY

CLIA #49D0221801
HLA-DQA1* = 02
HLA-DQb1* = 0501
Hla-DQB1* reported incorrectly as 0501 by [2870-VA691].
Changed to 0202 on Feb 21, 2018@14:57 by [2870-VA691].

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4 hours ago, CeliacDaniel said:

I just got brand new testing in and wanted to know if someone could help me on this one.

Misc Ancillary Test 12~QUEST DIAG

TEST NAME        RESULT

Hla-DQ2            NEGATIVE

Hla-DQ8            NEGATIVE

Hla-DQA1*         01

Hla-DQB1*        0202

Here are the notes, but regardless of what it says is there anything else I should be worried about?

The patient does not have the HLA-DQ variants associated with celiac disease. More than 97% of celiac patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or
both. Genetic counseling as needed.
Masamichi Ito, Ph.D.,FACMG Director, Molecular Genetics Typing performed by PCR and hybridization with sequence specific oligonucleotide probes (SSO) using the FDA-cleared LABType(R) SSO Kit.


Test(s) performed at:
QUEST DIAGNOSTICS CHANTILLY

CLIA #49D0221801
HLA-DQA1* = 02
HLA-DQb1* = 0501
Hla-DQB1* reported incorrectly as 0501 by [2870-VA691].
Changed to 0202 on Feb 21, 2018@14:57 by [2870-VA691].

I think you should wisely wait for your doctors to comment.  Did the VA ever run the TTG test for you?  What were the results?  Remember, 30 to 35% of the population carry the genes that COULD  develop into celiac disease.  On a few actually develop it.   It is used to exclude celiac disease and not to diagnose it.  Pretty much most celiac experts say if you do not have the genes, you will never get celiac disease. 

Edited by cyclinglady

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14 hours ago, cyclinglady said:

I think you should wisely wait for your doctors to comment.  Did the VA ever run the TTG test for you?  What were the results?  Remember, 30 to 35% of the population carry the genes that COULD  develop into celiac disease.  On a few actually develop it.   It is used to exclude celiac disease and not to diagnose it.  Pretty much most celiac experts say if you do not have the genes, you will never get celiac disease. 

The only other test the VA ran was: GLIADIN Ab,
IgA
25 High U (>< 20)

 

My doctor called me yesterday and talked with me about the test results concluding I don't have Celiac, but will not run any other tests.

 

Also went to the Emergency Room (ER) last night, I ate soy chorizo and soon after had diarrhea but the ingredients are:

Water, Soy Flour, Soybean Oil, Distilled White Vinegar, Paprika, Salt, Mustard Powder, Spices, Garlic Powder, Caramel Color, and Potassium Sorbate (to Maintain Freshness).

Very strange because I have been to the ER twice and too soon.

So I went to the ER on Jan 29 and here are the high results

AST: 34

ALT: 80

Fatty liver on an ultrasound was discovered

Urine PH 8.0

Monocytes 0.9 which is High

Last night on 2/5/2018 I was at the ER and here are the results.

CT scan:

Diffuse fatty infiltration of the liver

sigmoid diverticulosis without evidence of diverticulitis (this was not seen on the ultrasound a month ago)

everything else was normal, even my ALT (73) and AST (23)

Lipase however was 352, the range is 23-300 and on January 29 my Lipase was 21

Blood in UA was moderate, as compared to Jan 29 2018 was negative.

RBC (red blood cell), Urine was 15 the range is 0-3, in Jan it was 0

bacteria in urine occasional and urine mucous was present

and in Jan nothing was seen.

 

If I tell this to my doctors they tell me I'm having anxiety....lol

I can only imagine it now....bacteria in your urine Daniel! What!? You have anxiety, it's your PTSD...lol

But it was late last night and I will call my doctor today, I'm sure she will ignore me, but who knows.

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    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

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    • None of the thyroid therapies are drugs...anything you take is thyroid replacement hormones, if you are hypothyroid.  If Synthroid is not working well for you, I would highly recommend desiccated because they contain BOTH thyroid hormones, instead of just the T4 only.  I have been using Nature-throid for a long time and it has worked very well for me.  There are a few of them now but Nature-throid is one of the least expensive out there.  Armour and NP thyroid are great but more expensive.  Kind of annoying as they have been around for awhile so should not cost as much as they do.  Like allergy meds, many people use them and need them so price goes up.  But do not be afraid to try a more natural way to treat your Hashi's.  I have never tried Synthroid but was on the generic version for awhile and it just didn't work nearly as well for me as Nature-throid.  Turns out, I need the added T3.
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      Celiacs can also develop Diabetes or have thyroid issues which could lead to issues with grains/sugars. Celiac disease can also leave you open to a higher risk of SIBO  or Candida which would cause bloating or gas with sugars/starches like grains, beans, fruit, sugar.

      You can still get the above issues without celiac disease, and you can get food intolerance issues or sensitivities. I can suggest keeping a food diary for now, record what you and and limit your diet to whole foods only, Seems like your following a paleo diet with no grains, you might take it a bit further. Diary is a common issue so removing that and the Keto/Akins diet routes would limit your carb intake to help with bloating, by using fats/protein for fuel instead of sugars/carbs.
      https://www.wikihow.com/Keep-a-Food-Diary
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      We normally suggest those who come in and suspect wheat is a issue to their health to see about getting tested for celiac, if your allergic to it the testing would be impossible as you have to eat it for 8-12 weeks prior.  But the protocols and stuff in the Newbie 101 section can help you track down culprits of wheat/gluten sneaking into your diet still.
      https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
      https://www.celiac.com/forums/topic/91878-newbie-info-101/  
    • Are you saying you are diagnosed with Celiac disease?  
    • I developed a wheat allergy after getting quite sick and dizzy after eating bread.  Now I am afraid to eat rice, or anything that could be contaminated with wheat.  Altho I have eaten rice pasta and nothing happened.  After a week of being grain free I am starting to feel better, altho today I did get that weak shaky feeling so many have complained about.  It lasted most of the morning and is finally gone, hopefull it will get less and less, didnt have it for two or three days until today.  I am still awfully gassy if you know what I mean, hopefully this will subside soon too.  I do eat mostly fruits and veggies, once in awhile chicken.  I have done tons of reading on this subject, was wondering if anyone had a reaction to sugar?  For a few days I did have some diarrhea, but that has also stopped.  Any suggestions would be greatly appreciated. 
    • Maltodextrin is gluten-free.  But it should be listed as an ingredient. http://www.darigold.com/products/cottage-cheese/4percent-large-curd-cottage-cheese  
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