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Susan in NS

How long to get gluten back in

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Hi, failed the blood test 250 so my dr. Says I'm celiac but need to wait for the scope. I stopped eating wheat about 4 weeks ago and see improvement but was already on a scope list (hernia) for 14 months. When they call to book- when ever that may be...how long should I eat gluten before being scoped?.I believe I have had this for at least 8 years as my 2012 scope showed small intestine inflamation

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Wow, your TTG was a 250?  If you just need an endoscopy, your gluten challenge would just be 2 to 4 weeks. 

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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15 hours ago, Scott Adams said:

Normally you need to eat ~1 slice of wheat bread a day for at least 6 weeks before you do any tests for celiac disease, including blood tests or a biopsy.

Thank you for your quick response but you are really putting a damper on my imagined gluten food fest lol...I have a bucket list of pretzels, chinese food and Montana cajun onions. If all I get is a slice it shall be fresh, homemade and dripping with enough butter to make a cardiologist cringe. 

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Did you read my link?  The challenge allows you to eat any gluten as long as it is the equivalent of a slice of bread or two.  Read the link I provided and research a gluten challenge.  Going back on gluten after being gluten free can be awful and should be done under a doctor’s care.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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15 hours ago, cyclinglady said:

Wow, your TTG was a 250?  If you just need an endoscopy, your gluten challenge would just be 2 to 4 weeks. 

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

Are there other tests other then the scope? That sounds like there are other more dire tests that maybe in the future? 

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Talk to your doctor.  With a very positive celiac blood test (make sure it was either the TTG or the DGP), feeling better four weeks on a gluten-free diet and the fact you had inflammation of your last scope, he or she might give you a diagnosis.  I am sorry that you have to wait so long for a scope (months to a year?).  There are no other tests.  A genetic test can confirm your risk of developing celiac disease, but know that 35% of the population carries the genes that could develop into celiac disease.  It can not diagnose Celiac Disease.  

Not sure what you meant by dire tests.  If diagnosed you might need bone scans and other follow up care.  Celiac disease causes systemic damage and untreated your risk for cancer is elevated.  

Your best defense is to continue to research so that you make an informed decision. 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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23 minutes ago, cyclinglady said:

Did you read my link?  The challenge allows you to eat any gluten as long as it is the equivalent of a slice of bread or two.  Read the link I provided and research a gluten challenge.  Going back on gluten after being gluten free can be awful and should be done under a doctor’s care.  

I believe you 100% I believe I have had it for so long that all the symptoms became a new normal. I chalked a lot down to  normal middleage (51) until the persistant pain in my side came along and thr blood test came back then I read the symptoms and couldent wait to go gluten-free to see what changes would come. I am afraid that when I start again for the test it will be worse. I shall eat my favorite gluten in responsible doses. Thanks for the reply

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1 minute ago, Susan in NS said:

I believe you 100% I believe I have had it for so long that all the symptoms became a new normal. I chalked a lot down to  normal middleage (51) until the persistant pain in my side came along and thr blood test came back then I read the symptoms and couldent wait to go gluten-free to see what changes would come. I am afraid that when I start again for the test it will be worse. I shall eat my favorite gluten in responsible doses. Thanks for the reply

I've heard of people waiting 3 years for scopes right now where I am. My scope was scheduled in Feb 2019, it was not originally booked because of this issue but because a lasik eye surgery apt showed bear tracks in my retina which could indicate colon cancer. As I have a hiatal hernia the dr threw in the upper scope as well to do a check on that. I called 2 months ago and they said it would be soon but with the covid everything is on hold so dispute the dr. Advising me to eat normally I had decided not to as realistically it could be 6 more months.

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I was diagnosed at 51.  I just had anemia at the time.  My diagnosis was caught when I went for a cancer screening colonoscopy (all my friends were getting them ?).  Two months later I had vertebrae fractures doing nothing.  I was then diagnosed with osteoporosis.  Not saying that you have osteoporosis, but celiac disease is systemic.  You can also have more than one autoimmune disorder too.  So be aware.  

Eat a diet rich in real foods, identify other food intolerances, and learn about cross contamination.  Research, research, research.  This is the only illness that you have to treat yourself.  It can be tough, but it is doable.  You can heal.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I think you made a wise decision going gluten free now.  Who know what is going to happen with this pandemic?  We have already seen delays for routine healthcare.  We just have to be patient and do things to keep us safe and healthy.  

Keep in touch with your doctors. Look for cancellations once everything is back to normal or near normal.  Two weeks on a gluten challenge should do the trick.  Try not to worry.

I get your statement about chalking things up to old age.  I had a genetic anemia and iron-deficiency anemia life-long.    I was going through menopause and my periods were lasting 30 days which really dropped my hemoglobin severely.  I was so out of breath.  My GYN recommended a hysterectomy, but I got a few second opinions and decided against it.  My PCP recommended  the cancer screening colonoscopy just due to my age.    So glad my consulting GI ordered a celiac test.  It was positive, so he scoped both ends.  

My last endoscopy revealed a healed small intestine but found Autoimmune Gastritis (linked to my thyroiditis) and a polyp.  They removed the polyp, but AG is pretty much a precursor to cancer.  Not much I can do, but to improve my immune system by eating a healthy gluten-free diet, moderate exercise, sleep, get my vitamin D (for me, the sun does the trick) and stay connected to people and do fun things (I play the flute and ride my bike).  So far, I am still good.  

Hang in there!  

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Susan in NS,

To add to what Cyclinglady said....if I had to wait that long for a scope that long I might just accept the blood test and assume I had Celiac disease....

I was in a similar situation when I got diagnosed...

I accepted the blood test as positive after my serum antibodies went down after a trial month of being gluten free and moved on....here is an article about from the huffpost several years ago...

https://www.huffpost.com/entry/gluten-what-you-dont-know_b_379089

where doctor hyman says...

"In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be "false positives." That means the test looks positive but really isn't significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

Organ  specific antibodies have been found in Celiac's...there maybe a more updated study than this one but it is the one I know about currently...entitled

"Organ-specific autoantibodies in coeliac disease: do they represent an epiphenomenon or the expression of associated autoimmune disorders?"

https://www.ncbi.nlm.nih.gov/pubmed/9265573

the reason gluten triggers an immune response is we  have an alert system in our body via our microvilli (recently discovered) that triggers our body and it's organs to go into an alarm state allowing gluten to set off this response in our bodies.

Here is an article about it...

https://www.medicalnewstoday.com/articles/321624#Safe-way-to-treat-inflammatory-disease?

I am going to stop now so this doesn't get way too long...

I hope this is helpful but it is not medical advise.

Posterboy,

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On 5/1/2020 at 5:30 PM, Scott Adams said:

Normally you need to eat ~1 slice of wheat bread a day for at least 6 weeks before you do any tests for celiac disease, including blood tests or a biopsy.

I find this very interesting, when I had the scope done I was not given this information, I had been avoiding gluten because it gave me cramps. I was told my villi were fine and that I did not have celiac disease. That was a few months before a tumor wrapped around my duodeum ruptured, nearly killing me. As it turned out I have had the disease for probably my entire life and now I had T-cell non hodgkin lymphona which  I am told is directly related to my celiac and the doctor had performed the wrong test, I should have had the blood test. I think there are too many doctors that need to be better trained about this disease that affects so many.

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21 hours ago, cyclinglady said:

I think you made a wise decision going gluten free now.  Who know what is going to happen with this pandemic?  We have already seen delays for routine healthcare.  We just have to be patient and do things to keep us safe and healthy.  

Keep in touch with your doctors. Look for cancellations once everything is back to normal or near normal.  Two weeks on a gluten challenge should do the trick.  Try not to worry.

I get your statement about chalking things up to old age.  I had a genetic anemia and iron-deficiency anemia life-long.    I was going through menopause and my periods were lasting 30 days which really dropped my hemoglobin severely.  I was so out of breath.  My GYN recommended a hysterectomy, but I got a few second opinions and decided against it.  My PCP recommended  the cancer screening colonoscopy just due to my age.    So glad my consulting GI ordered a celiac test.  It was positive, so he scoped both ends.  

My last endoscopy revealed a healed small intestine but found Autoimmune Gastritis (linked to my thyroiditis) and a polyp.  They removed the polyp, but AG is pretty much a precursor to cancer.  Not much I can do, but to improve my immune system by eating a healthy gluten-free diet, moderate exercise, sleep, get my vitamin D (for me, the sun does the trick) and stay connected to people and do fun things (I play the flute and ride my bike).  So far, I am still good.  

Hang in there!  

 

Heathy diet will be a huge obstacle for me tbh I have the eating patterns of a 12 year old at an unsupervised sleepover. I'm a Baker by nature not a cook. But it's a learning curve. I do believe that it's a hugely under diagnosed disease. I believe my husband and spouse have it as well, my son (21) has had issues since about 12 and decided on his own to try gluten free before I even had a blood test. He gets so I'll he wont have the blood test as he would have to eat gluten but has decided to just assume he has it. I  look back as I read things and realize little things I've had for years were indicators. 

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20 hours ago, Posterboy said:

Susan in NS,

To add to what Cyclinglady said....if I had to wait that long for a scope that long I might just accept the blood test and assume I had Celiac disease....

I was in a similar situation when I got diagnosed...

I accepted the blood test as positive after my serum antibodies went down after a trial month of being gluten free and moved on....here is an article about from the huffpost several years ago...

https://www.huffpost.com/entry/gluten-what-you-dont-know_b_379089

where doctor hyman says...

"In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be "false positives." That means the test looks positive but really isn't significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

Organ  specific antibodies have been found in Celiac's...there maybe a more updated study than this one but it is the one I know about currently...entitled

"Organ-specific autoantibodies in coeliac disease: do they represent an epiphenomenon or the expression of associated autoimmune disorders?"

https://www.ncbi.nlm.nih.gov/pubmed/9265573

the reason gluten triggers an immune response is we  have an alert system in our body via our microvilli (recently discovered) that triggers our body and it's organs to go into an alarm state allowing gluten to set off this response in our bodies.

Here is an article about it...

https://www.medicalnewstoday.com/articles/321624#Safe-way-to-treat-inflammatory-disease?

I am going to stop now so this doesn't get way too long...

I hope this is helpful but it is not medical advise.

Posterboy,

Thank you for the articles, I will read them to my family. I believe all 3 of us have it but I am the only one who has been tested. I threw out all the gluten in the house and there was an almost immediate improvements in um ...bathroom/stomach issues lol that had been ongoing for years for my husband. I am trying to convince him to go to the dr. As well but hes reluctant aka obstinate. He is not quite getting the big picture though and is shrugging off checking labels for things he doesnt feel would contain gluten. I think these articles will help show him it's a lot bigger then just skipping obvious sources of wheat. 

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My hubby went gluten free 20 years ago per the advice of his PCP and my allergist.  The diet worked.  Twelve years later, I received my celiac disease diagnosis.  They say after marriage, that you become one.  Oddly, a recent study finds that spouses  can both have celiac disease.  It adds to the theory that environment comes into play.  Me?  I think that his family is riddled with autoimmune just like mine.  

He refuses to do a challenge.  I can not blame him.  We like paying our bills!  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Susan and Cyclinglady,

Here is the research Cyclinglady mentioned about spouses....

https://www.news-medical.net/news/20150701/Spouses-Relatives-Of-Celiac-Disease-Patients-At-Risk-For-Autoimmune-Diseases.aspx

Here is additional research that has come out since then that talks about genetic risk factors triggered by the environment...

https://www.upi.com/Health_News/2017/08/16/Genetic-risk-factors-for-disease-can-be-affected-by-environment/4251502820421/

About the same time as the spouse study came out there was a study from Sweden concluding the same thing...Lifestyle is a risk factor for Celiac disease...

https://www.sciencedaily.com/releases/2015/11/151102100302.htm

Spouses and other family members share the same diet and stress's so it would seem likely it might effect their health in a similar manner....

The SAD diet is not a very healthy one in general....perhaps this would/could be a wake up to change what you are eating...as a family

Take Type II diabetes....I have keep my symptom's under control with diet, exercise and supplementing with my missing nutrients...

I  used to have what is typically termed "Genetically High" Cholesterol levels that is usually treated with statins....common in diabetics...

And though my Cholesterol was high for a while after taking Thiamine it improved to normal levels....I didn't know it at the time but I was low in Thiamine.....taking Thiamine can help diabetics and non diabetics alike.

Here is some research on it...

https://www.ncbi.nlm.nih.gov/pubmed/24550684

I have had to figure it out as I go...but I wouldn't look back...

I hope this is helpful but it is not medical advise.

Posterboy,

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20 hours ago, cyclinglady said:

My hubby went gluten free 20 years ago per the advice of his PCP and my allergist.  The diet worked.  Twelve years later, I received my celiac disease diagnosis.  They say after marriage, that you become one.  Oddly, a recent study finds that spouses  can both have celiac disease.  It adds to the theory that environment comes into play.  Me?  I think that his family is riddled with autoimmune just like mine.  

He refuses to do a challenge.  I can not blame him.  We like paying our bills!  

I wish it would become more standardized in testing...a simple blood test! It should be a part of regular check ups. I know at least 3 people who have a lot of the symptoms and have never been tested. When I list the symptoms they shrug and probably wont talk to their Dr. As the Dr. didnt come up with it. If more people were tested then more manufacturers would be willing to substitute some of the malts sugars and soy bean additives that put so much off limits to us

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On 5/2/2020 at 9:16 AM, Susan in NS said:

I believe you 100% I believe I have had it for so long that all the symptoms became a new normal. I chalked a lot down to  normal middleage (51) until the persistant pain in my side came along and thr blood test came back then I read the symptoms and couldent wait to go gluten-free to see what changes would come. I am afraid that when I start again for the test it will be worse. I shall eat my favorite gluten in responsible doses. Thanks for the reply

You are not alone.I guess it really does take months to heal. Now i am finding my stomach and  side pains are going away completely. I been gluten free since November, but got glutened  in FEB so i guess Feb. Well i guess when you get glutened i guess that doesn't do hardcore damage, to the stomache etc  ,so its been almost 6 months for me  gluten-free . BUT pay attention to this : i have a built in warning system, but can't speak for anybody else: I believe i maybe wouldn't have gotten glutened if i would have paid attention to it:  i immediately get pains (pulsating) right above my pubic area upon ingesting GLUTENed items (high trace amounts), i don't know if that is the stomache or small intestines. BUT i did NOT stop doing what i was doing because i didn't know at the time my body was trying to TELL me something.  With me getting glutened is bad since then i gotta put up with a big JOLT to my pituitary gland which causes a whole lot of problems the next 6 weeks.  Hypoglycemia etc etc., cant handle smells etc. the sun etc.    So pay attention to that when you become hardcore celiac.....the slight pulsating pains above the pubic area.   Then you know whatever you are eating  , to STOP.   Thanks

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In general the only time I've heard of mass screening for celiac disease was in European countries with single payer health care systems. Screening early and treating celiac disease can save a great deal of health care costs.


Scott Adams

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1 minute ago, Scott Adams said:

In general the only time I've heard of mass screening for celiac disease was in European countries with single payer health care systems. Screening early and treating celiac disease can save a great deal of health care costs.

I believe this gluten thing is the biggest pandemic never talked about. Its a hidden pandemic.   I really do. Sounds like my grandma was also gluten intolerant and maybe my step dad,  but  also i believe my sister is having some issues. I mean think about it . All the people who you know that keep complaining about acid reflux. Hello!! That isn't normal. It is something you are putting into your body that your body doesn't like. Even if they are eating tomato sauce chances are it is infected with gluten unless they buy special gluten-free tomato sauce.  Because you know docs would say  "oh you are eating spicey things or acid-tomato  things" and bla bla,  and  "here is a pill for it" .   When most likely its GLUTEN. Thanks

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1 hour ago, zenith12 said:

I believe this gluten thing is the biggest pandemic never talked about. Its a hidden pandemic.   I really do. Sounds like my grandma was also gluten intolerant and maybe my step dad,  but  also i believe my sister is having some issues. I mean think about it . All the people who you know that keep complaining about acid reflux. Hello!! That isn't normal. It is something you are putting into your body that your body doesn't like. Even if they are eating tomato sauce chances are it is infected with gluten unless they buy special gluten-free tomato sauce.  Because you know docs would say  "oh you are eating spicey things or acid-tomato  things" and bla bla,  and  "here is a pill for it" .   When most likely its GLUTEN. Thanks

Zenith12,

Tomato sauce doesn't have gluten in it.....but it does have a lot of ingredients that make it a nearly perfect combination of things that can cause GERD/Heartburn.

Combine tomato paste with even a gluten free pizza...and you have all the perfect ingredients....like, fats, carbs, and acidic things and almost instantly you have heartburn...

Here is some articles about it...

https://www.tandurust.com/acid-reflux/acid-reflux-ketchup-causes.html

https://healthfully.com/262110-acid-reflux-with-tomatoes.html

Most people have low stomach acid being diagnosed as high stomach acid instead...

timing is everything as they say....if foods cause you heartburn your stomach acid is already not high enough to digest the foods your are eating....if it was truly too high a stomach acid...this would happen between meals....and eating smaller more frequent meals would keep it under control...

You can use baking soda to test this theory...

https://drjockers.com/5-ways-test-stomach-acid-levels/

See also this 3 part series by clinician Chris Kresser...

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

Stress is a trigger for heartburn because stress burns energy....the energy your body needs to produce stomach acid and over time it becomes low...

Here is an article about it entitled "The effect of life stress on symptoms of heartburn."

https://www.ncbi.nlm.nih.gov/pubmed/15184707

I hope this is helpful but it is not medical advise.

Posterboy,

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On 5/4/2020 at 6:18 PM, zenith12 said:

I believe this gluten thing is the biggest pandemic never talked about. Its a hidden pandemic.   I really do. Sounds like my grandma was also gluten intolerant and maybe my step dad,  but  also i believe my sister is having some issues. I mean think about it . All the people who you know that keep complaining about acid reflux. Hello!! That isn't normal. It is something you are putting into your body that your body doesn't like. Even if they are eating tomato sauce chances are it is infected with gluten unless they buy special gluten-free tomato sauce.  Because you know docs would say  "oh you are eating spicey things or acid-tomato  things" and bla bla,  and  "here is a pill for it" .   When most likely its GLUTEN. Thanks

I agree. Dr.'s love to throw IBS at everything. My husband's grandmother died of stomach cancer as did my natural father..I'd bet they both had it for years. 

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