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Abel

Is this normal?

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Hello everyone. I recently posted my "new member introduction" on the board, so I apologize about such a quick follow up.

I have an upper GI scope scheduled for the 22nd of this month. I was told 4 weeks ago that after a positive blood test to continue consuming gluten until the scope procedure was done. I lasted 2 weeks and couldn't take the pain anymore. I did my very best (usually eating only 1 time a day) to completely rid my body of gluten. I had the idea of returning to gluten a few days prior to the upper GI test. I have recently come across an article that suggests a minimum of 2 weeks consuming a standard amount of gluten prior to the upper GI scope in order to get an accurate test result.

Question 1: Have a ruined my biopsy results because of this slip up?

So there I was 5 days before the procedure and I've cut gluten out for about that many days. Prior to that I've consumed it every day for a minimum of 6 months. Now to the 2nd part of my post. I was at a Christmas party this afternoon knowing that I would have to eat the one thing that I know causes so much discomfort. The items that I consumed were a couple of dinner rolls, and a cupcake along with the assortment of non-gluten containing food. I usually start showing signs anywhere from 30 minutes to 2 hours. The time came and passed with some minor stomach pains but that was all. On the way home I started yawning every 5-10 seconds for the next few hours (most of the time this is an indication of a migraine, but so far so good) and I could feel the fatigue setting in. I've been in what seems like a horrible stupor for the last 12 hours and my wife commented on my roller coaster of emotions this evening.

Question 2: How did I skip the GI problems and go straight to the fog/confusion?

I've had horrible GI problems for months and now after being gluten free for 5 days and going back to eating it I'm not experiencing all of the symptoms I had before. I can't explain it, and its driving me crazy... Maybe crazy isn't the word I'm looking for. Confused is more like it. I'm not complaining about not having to run to the bathroom and sweat it out for several hours, but having things change so quickly does not make me feel any more comfortable about the situation.

 

Edited by Abel

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I do not think (but I am not a doctor), that you ruined your chances of obtaining biopsy results that may determine whether you have celiac disease or not.  It takes months to years for the intestines to heal based on what members have stated on this forum.  Remember, you can not clear out gluten.  Once ingested, it starts an autoimmune response that varies from person to person.  No unlike a flare-up from Multiple Sclerosis or Lupus.  It is not an allergy!  Be sure to let your doctor know.

celiac disease symptoms can wax and wane.  My main symptom at diagnosis was anemia.  No gut issues yet I had moderate to severe intestinal damage.   Two years later, I was glutened and I suffered all the classic gut symptoms which lasted three months.  Go figure!  

Hang in there!  Just a few more days to go!  


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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Gut reactions can be delayed so you may find that reaction shows up at some point in the next 72 hours. Do tell your GI about your going gluten free before the biopsy and how long it was. Even if you should have a negative biopsy that is not going to negate the positive blood work. Just go back to the diet strictly after the procedure is done.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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8 hours ago, Abel said:

Hello everyone. I recently posted my "new member introduction" on the board, so I apologize about such a quick follow up.

I have an upper GI scope scheduled for the 22nd of this month. I was told 4 weeks ago that after a positive blood test to continue consuming gluten until the scope procedure was done. I lasted 2 weeks and couldn't take the pain anymore. I did my very best (usually eating only 1 time a day) to completely rid my body of gluten. I had the idea of returning to gluten a few days prior to the upper GI test. I have recently come across an article that suggests a minimum of 2 weeks consuming a standard amount of gluten prior to the upper GI scope in order to get an accurate test result.

Question 1: Have a ruined my biopsy results because of this slip up?

So there I was 5 days before the procedure and I've cut gluten out for about that many days. Prior to that I've consumed it every day for a minimum of 6 months. Now to the 2nd part of my post. I was at a Christmas party this afternoon knowing that I would have to eat the one thing that I know causes so much discomfort. The items that I consumed were a couple of dinner rolls, and a cupcake along with the assortment of non-gluten containing food. I usually start showing signs anywhere from 30 minutes to 2 hours. The time came and passed with some minor stomach pains but that was all. On the way home I started yawning every 5-10 seconds for the next few hours (most of the time this is an indication of a migraine, but so far so good) and I could feel the fatigue setting in. I've been in what seems like a horrible stupor for the last 12 hours and my wife commented on my roller coaster of emotions this evening.

Question 2: How did I skip the GI problems and go straight to the fog/confusion?

I've had horrible GI problems for months and now after being gluten free for 5 days and going back to eating it I'm not experiencing all of the symptoms I had before. I can't explain it, and its driving me crazy... Maybe crazy isn't the word I'm looking for. Confused is more like it. I'm not complaining about not having to run to the bathroom and sweat it out for several hours, but having things change so quickly does not make me feel any more comfortable about the situation.

 

Hi,  I had a similar problem to you.  When they wanted to do a biopsy, I told the nurse at the clinic I had not been eating gluten long enough for the results to be accurate but she insisted that there was 'hidden' gluten in products and I was probably still having gluten.  I told her I made everything from scratch and in no way was I having gluten.  She went ahead and admitted me anyway, refusing to listen to what I was saying and as suspected (by myself) the result only showed boarder-line results.  When I told my consultant what had happened, he realised straight away and booked me in for another one, and was told to eat gluten every day before the tests. (which was booked for 6 weeks ahead). I had been having problems for many years before this, so I had not just developed the disease so the damage was bieng done to my body, including malnutrition (I was extremely ill by that point). This time the results showed a lot of damage to the villi in the gut.

I am only telling you this because I would hate for you to have to go through an endoscopy only to get inaccurate results.  Obviously, it is your choice whether you want to postpone and start eating gluten again, as I know how painful this is, but I felt it was only fair to warn you that you may not get an accurate result, regardless of the comments above, sadly, you may find it a waste of time, not to mention the discomfort of having to go through the procedure.


Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.

Despite all, remaining positive!

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11 hours ago, Abel said:

Hello everyone. I recently posted my "new member introduction" on the board, so I apologize about such a quick follow up.

I have an upper GI scope scheduled for the 22nd of this month. I was told 4 weeks ago that after a positive blood test to continue consuming gluten until the scope procedure was done. I lasted 2 weeks and couldn't take the pain anymore. I did my very best (usually eating only 1 time a day) to completely rid my body of gluten. I had the idea of returning to gluten a few days prior to the upper GI test. I have recently come across an article that suggests a minimum of 2 weeks consuming a standard amount of gluten prior to the upper GI scope in order to get an accurate test result.

Question 1: Have a ruined my biopsy results because of this slip up?

So there I was 5 days before the procedure and I've cut gluten out for about that many days. Prior to that I've consumed it every day for a minimum of 6 months. Now to the 2nd part of my post. I was at a Christmas party this afternoon knowing that I would have to eat the one thing that I know causes so much discomfort. The items that I consumed were a couple of dinner rolls, and a cupcake along with the assortment of non-gluten containing food. I usually start showing signs anywhere from 30 minutes to 2 hours. The time came and passed with some minor stomach pains but that was all. On the way home I started yawning every 5-10 seconds for the next few hours (most of the time this is an indication of a migraine, but so far so good) and I could feel the fatigue setting in. I've been in what seems like a horrible stupor for the last 12 hours and my wife commented on my roller coaster of emotions this evening.

Question 2: How did I skip the GI problems and go straight to the fog/confusion?

I've had horrible GI problems for months and now after being gluten free for 5 days and going back to eating it I'm not experiencing all of the symptoms I had before. I can't explain it, and its driving me crazy... Maybe crazy isn't the word I'm looking for. Confused is more like it. I'm not complaining about not having to run to the bathroom and sweat it out for several hours, but having things change so quickly does not make me feel any more comfortable about the situation.

 

Nothing you are doing is normal or correct.  You need to stop listening to your doctors if your problem is gluten. There is no medical cure for gluten sensitivity, so they can not help you, and any doctor who would tell a person to poison theirselves should be sued for malpractice.  You need to stop eating gluten, it will take your body 2 years to heal, your biopsy means nothing except to the pockets of your doctors. Also keep in mind that you might also be lactose intolerant as well, because celiac disease destroys the cilia in the small intestine that secrete lactase the enzyme that digest milk.  Thus I am both lactose and gluten intolerant.  Are you consuming milk or products with milk in them?

Edited by Positron
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1 hour ago, Positron said:

Nothing you are doing is normal or correct.  You need to stop listening to your doctors if your problem is gluten. There is no medical cure for gluten sensitivity, so they can not help you, and any doctor who would tell a person to poison theirselves should be sued for malpractice.  You need to stop eating gluten, it will take your body 2 years to heal, your biopsy means nothing except to the pockets of your doctors. Also keep in mind that you might also be lactose intolerant as well, because celiac disease destroys the cilia in the small intestine that secrete lactase the enzyme that digest milk.  Thus I am both lactose and gluten intolerant.  Are you consuming milk or products with milk in them?

the o.p. is trying to get tested and people need to be eating gluten to be tested.  there is no sure time frame for healing.  what if it's not celiac at all but something else revealed by an endoscopy....


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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1 hour ago, notme! said:

the o.p. is trying to get tested and people need to be eating gluten to be tested.  there is no sure time frame for healing.  what if it's not celiac at all but something else revealed by an endoscopy....

I understand that the poster is trying to get tested. However if a person is gluten intolerant, and the problem has progressed to the point of abdominal pain and internal bleeding, eating gluten can cause death.  Thus there is no reason to die for a medical test, besides the test does not enable any treatment.  You get tested for cancer, then they decide what type of cancer treatment that you need.  If you are gluten sensitive the treatment is not to eat gluten.  Again gluten can kill, so this woman could die, and her doctor needs to feel her pain.  The sad fact is that medical doctors believe that we are crazy, I was told just that, then proved them wrong.  I once ask a doctor if gluten sensitivity could cause blood in the stool, he either did not know or lied because he told me no.  Or he wanted to do $50,000.00 worth of medical test, while I suffered.  This doctor is no different, and telling someone to poison their selves is highly unethical and illegal.

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Positron, notme! is correct when they said other issues can be found in the upper GI scope that may or may not be celiac related. Do I think that the doctor has some motivation regarding getting paid? Probably. Will the results change what I am going to do after the test? I'm going to remain gluten free, so no.

I've come to the conclusion that while I'm healthy it takes longer for the affects of gluten to show, and the GI symptoms are less severe than when I'm already in a weakened state. After 72 hours of consuming gluten I started to run a low grade fever and am really feel worn down now. The next few days will probably continue to get worse and the pain in my abdomen and left side will be there for a while, even after I go gluten free.

I'm still learning the signs and symptoms regarding my own body, but this forum and its members have been a big help. Thank you all!

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17 minutes ago, Abel said:

Positron, notme! is correct when they said other issues can be found in the upper GI scope that may or may not be celiac related. Do I think that the doctor has some motivation regarding getting paid? Probably. Will the results change what I am going to do after the test? I'm going to remain gluten free, so no.

I've come to the conclusion that while I'm healthy it takes longer for the affects of gluten to show, and the GI symptoms are less severe than when I'm already in a weakened state. After 72 hours of consuming gluten I started to run a low grade fever and am really feel worn down now. The next few days will probably continue to get worse and the pain in my abdomen and left side will be there for a while, even after I go gluten free.

I'm still learning the signs and symptoms regarding my own body, but this forum and its members have been a big help. Thank you all!

Can a person with gluten disorder die from complications of eating gluten?  Yes or no only please.  The correct answer is why no person with pains should continue to consume the poison that is causing those pains. Also remember that once a doctor diagnoses this, they can no longer treat you for it, because there is no treatment, 

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23 hours ago, Positron said:

 You get tested for cancer, then they decide what type of cancer treatment that you need. 

thank you for proving my point.  

BOOM.  ya done


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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5 hours ago, frieze said:

but you don't need to be eating gluten for that testing...  YOU done.

ya right, but o.p. is also being tested for celiac (and whatever else) so...  idk about everybody else, but when i had my endoscopy, it was considered 'exploratory' and, yep, in the back of my mind was the (cancer) worry.


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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