MBOB31

[mbob31]

Hi All,

I'm here looking for opinions on what might be going on/if I've taken the right steps. I'm 24 and have eaten Gluten and whatever I want (mostly healthy) for the entirety of my life. I've had experience on and off with IBS but nothing like I've experienced this past month. 5 weeks ago I began a battle with excruciating abdominal pain after eating and bloating that lasted all day. I discovered that my symptoms always began after eating and never fully went away, just subsided for a few hours and then worsened again shortly after eating. for 5 weeks I was constipated, irritable, anxious, bloated, and in extreme pain. Finally I went to urgent care where they did routine test (nothing for celiac) and sent me home suggesting an elimination diet. Because my grandmother and my cousin (on different sides of the family) have Celiac Disease I began my elimination diet with Gluten. The next day I felt better, not 100%, but over the next 5 days I began to feel better each day. I went to the Gastro doctor who suggested a Celiac blood panel, but told me I had to eat Gluten for 2 weeks again. I ate Gluten for 24 years, and came off of Gluten for 5 days. After that appointment I began eating Gluten again and was writhing in pain. I lasted 4 days before calling the nurse who then told me to come in and have the bloodwork done. I did this on Friday, and promptly eliminated Gluten afterwards. It is Monday and I am waiting for my results, but I am slowly feeling myself again after 3 days Gluten free.

My question is... did I sabotage the blood test by taking it early? Or should the antibodies from 24 years of Gluten still be present after 5 days off of Gluten and 4 days back on? I cannot handle the pain of going through this again, just for a test to tell me what's harming my gut!

 

 

[Ennis-TX]

5 hours ago, mbob31 said:

Hi All,

I'm here looking for opinions on what might be going on/if I've taken the right steps. I'm 24 and have eaten Gluten and whatever I want (mostly healthy) for the entirety of my life. I've had experience on and off with IBS but nothing like I've experienced this past month. 5 weeks ago I began a battle with excruciating abdominal pain after eating and bloating that lasted all day. I discovered that my symptoms always began after eating and never fully went away, just subsided for a few hours and then worsened again shortly after eating. for 5 weeks I was constipated, irritable, anxious, bloated, and in extreme pain. Finally I went to urgent care where they did routine test (nothing for celiac) and sent me home suggesting an elimination diet. Because my grandmother and my cousin (on different sides of the family) have Celiac Disease I began my elimination diet with Gluten. The next day I felt better, not 100%, but over the next 5 days I began to feel better each day. I went to the Gastro doctor who suggested a Celiac blood panel, but told me I had to eat Gluten for 2 weeks again. I ate Gluten for 24 years, and came off of Gluten for 5 days. After that appointment I began eating Gluten again and was writhing in pain. I lasted 4 days before calling the nurse who then told me to come in and have the bloodwork done. I did this on Friday, and promptly eliminated Gluten afterwards. It is Monday and I am waiting for my results, but I am slowly feeling myself again after 3 days Gluten free.

My question is... did I sabotage the blood test by taking it early? Or should the antibodies from 24 years of Gluten still be present after 5 days off of Gluten and 4 days back on? I cannot handle the pain of going through this again, just for a test to tell me what's harming my gut!

 

 

I would say 5 days is not going to hurt the test assuming you were eating gluten heavy before that (more than 2 slices of bread a day). DO NOTE that blood test the suggestion is 8-12weeks of a gluten diet prior, and 2 weeks for the endoscope. Also, note that testing is not finished yet....sadly you will have to keep eating gluten, they will need to do an endoscopy to confirm unless your doctor will go on the blood test alone.

Due to it being in your family I am going to venture a guess and say your disease became active or even has been active for a while and just changed to the pain due to damage or symptoms.  Assuming you know what your in for but might be good to go ahead and check our newbie 101 section and read it over to be sure, and start preparing to clean everything out and change over. Keep us updated and if you need any help troubleshooting to feel free to ask here.

 

[mbob31]

17 hours ago, Ennis_TX said:

I would say 5 days is not going to hurt the test assuming you were eating gluten heavy before that (more than 2 slices of bread a day). DO NOTE that blood test the suggestion is 8-12weeks of a gluten diet prior, and 2 weeks for the endoscope. Also, note that testing is not finished yet....sadly you will have to keep eating gluten, they will need to do an endoscopy to confirm unless your doctor will go on the blood test alone.

Due to it being in your family I am going to venture a guess and say your disease became active or even has been active for a while and just changed to the pain due to damage or symptoms.  Assuming you know what your in for but might be good to go ahead and check our newbie 101 section and read it over to be sure, and start preparing to clean everything out and change over. Keep us updated and if you need any help troubleshooting to feel free to ask here.

 

Thank you so much! So if they have me go through with an endoscopy wouldn’t the damage already be done in my stomach? Wondering what 2 weeks of gluten would do if there’s already signs of damage? Sadly my doctor doesn’t answer these questions for me...I never get a firm answer! What’s your opinion/experience?

[cyclinglady]

Your doctor may not have an answer because each patient is different.  I heard a lecture by Dr. Alessio Fasano once who said that intestinal healing can occur in as little as two weeks.  Some patients might take a year or longer.  It all depends on the damage which does not necessarily correlate with symptoms.  For example, I had no GI symptoms yet my intestinal damage was severe.  Some have severe symptoms and yet have little damage.  To be safe and to obtain a correct diagnosis, you would need to consume gluten for two weeks prior to an endoscopy.  This can be very hard to do after being in a gluten free diet.  

Remember, celiac disease is an autoimmune disorder like lupus, rheumatoid arthritis or MS except the trigger is known — gluten.  Once activated celiac disease can cause the body to attack the small intestine and cause damage beyond the gut.  It usually heals on a gluten-free diet, but typically it takes time because dietary mistakes are easily made.  

Did your GI say that if your blood test is positive (I sure hope the entire panel was run because if you are like me, you might not test positive on the standard screening TTG tests), how soon can he get you in for the endoscopy?  You might call and ask.  If it is with a few weeks, you might consider staying on gluten. Just a slice of bread or two will suffice.  

I am sorry that you are struggling with this.  It is hard!  i want to share this.  I thought my niece had celiac disease, but it turns out she had Crohn’s.  She was diagnosed via a pill camera as her damage was beyond both scopes.  What I am saying is it might not be celiac disease.  It might be another AI.  Advocate for a root cause.  

I wish you well!  

[mbob31]

2 hours ago, cyclinglady said:

Your doctor may not have an answer because each patient is different.  I heard a lecture by Dr. Alessio Fasano once who said that intestinal healing can occur in as little as two weeks.  Some patients might take a year or longer.  It all depends on the damage which does not necessarily correlate with symptoms.  For example, I had no GI symptoms yet my intestinal damage was severe.  Some have severe symptoms and yet have little damage.  To be safe and to obtain a correct diagnosis, you would need to consume gluten for two weeks prior to an endoscopy.  This can be very hard to do after being in a gluten free diet.  

Remember, celiac disease is an autoimmune disorder like lupus, rheumatoid arthritis or MS except the trigger is known — gluten.  Once activated celiac disease can cause the body to attack the small intestine and cause damage beyond the gut.  It usually heals on a gluten-free diet, but typically it takes time because dietary mistakes are easily made.  

Did your GI say that if your blood test is positive (I sure hope the entire panel was run because if you are like me, you might not test positive on the standard screening TTG tests), how soon can he get you in for the endoscopy?  You might call and ask.  If it is with a few weeks, you might consider staying on gluten. Just a slice of bread or two will suffice.  

I am sorry that you are struggling with this.  It is hard!  i want to share this.  I thought my niece had celiac disease, but it turns out she had Crohn’s.  She was diagnosed via a pill camera as her damage was beyond both scopes.  What I am saying is it might not be celiac disease.  It might be another AI.  Advocate for a root cause.  

I wish you well!  

Hi and thank you! 

I did not get my results back but have been warned there can be false negatives. I’m hoping they did the full panel, but they only took one tube of blood. Your explanation completely makes sense as to why I need gluten those two weeks prior, but as you and most people on here know... easier said than done. Even just writing this post I’m tearing up at the thought of being in that pain again. Makes me wish there was some advancement in medicine that could alleviate this process. 

The only redeeming factor is that I’ve discovered what has been causing me so much discomfort. 

[cyclinglady]

If you did not get the complete celiac panel, you might ask for it.  In my case, I only test positive to the DGP IgA, even in repeated follow-up testing.  Some celiacs are seronegative.   That means they never have positive blood tests.  This affects about 10% of celiacs.  No small number!  Some celiacs are Immunoglobulin A (IgA) deficient.  If your doctor fails to run this test, it means that any IgA based celiac disease test (e.g. TTG IgA) would not work if you do not produce IgA.  If tests are positive, it is rare that the celiac tests are incorrect.  The exception is a slightly elevated TTG (just above the range) which can occur typically with other autoimmune disorders like inflammatory bowel disease.  (Maybe other illnesses too, but I am not sure.)

Because you have a strong family history, you might decide to go gluten free and just feel good.  It is what my hubby did 20 years ago when celiac disease was not well known.  Two doctors told him to go gluten-free.  He did and the diet worked.  We know he has an issue with gluten.  What nut would remain gluten free for 20 years for the heck of it?  He refuses to do a gluten challenge and I can not blame him.  Then I was formally diagnosed years later.  Hubby will tell you that I get way more family, friends and medical support.  Just something to consider.  It also helps if you have kids.  My own kid has to be tested every few years even if symptom free.  It is easy to justify (Insurance) repeated testing with my diagnosis.

You need to figure out what is best for you though.  Keep researching.  It is your best defense!  

[mbob31]

1 hour ago, cyclinglady said:

If you did not get the complete celiac panel, you might ask for it.  In my case, I only test positive to the DGP IgA, even in repeated follow-up testing.  Some celiacs are seronegative.   That means they never have positive blood tests.  This affects about 10% of celiacs.  No small number!  Some celiacs are Immunoglobulin A (IgA) deficient.  If your doctor fails to run this test, it means that any IgA based celiac disease test (e.g. TTG IgA) would not work if you do not produce IgA.  If tests are positive, it is rare that the celiac tests are incorrect.  The exception is a slightly elevated TTG (just above the range) which can occur typically with other autoimmune disorders like inflammatory bowel disease.  (Maybe other illnesses too, but I am not sure.)

Because you have a strong family history, you might decide to go gluten free and just feel good.  It is what my hubby did 20 years ago when celiac disease was not well known.  Two doctors told him to go gluten-free.  He did and the diet worked.  We know he has an issue with gluten.  What nut would remain gluten free for 20 years for the heck of it?  He refuses to do a gluten challenge and I can not blame him.  Then I was formally diagnosed years later.  Hubby will tell you that I get way more family, friends and medical support.  Just something to consider.  It also helps if you have kids.  My own kid has to be tested every few years even if symptom free.  It is easy to justify (Insurance) repeated testing with my diagnosis.

You need to figure out what is best for you though.  Keep researching.  It is your best defense!  

You’re awesome. Just saying. Your insight has made this whole process seem worth it. Hope to have answers soon!