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Diagnoses

Pegsc82
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Pegsc82 Newbie
Pegsc82
Posted

I was diagnosed 10 years ago by genetic testing and symptoms, dr didn’t do bloodwork or endoscopy. I continue to have severe bloating , other digestive issues along with weight gain . I’ve been Gluten-free 10 years, dairy and grain free 2 months . Should I go get endoscopy and blood work now?

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Scott Adams Grand Master
Scott Adams
Posted

If you've been happily gluten-free for 10 years I don't see any reason to start eating gluten again to be retested, unless you're not happy with the diet, and doubt your self diagnosis. If you need a diagnosis to stay on the gluten-free diet, then it probably makes sense to do a gluten challenge and eat gluten daily for 4-6 weeks for a celiac disease blood panel. Given how long you've been gluten-free it's possible you may need to eat gluten for a longer time, but here is more info on that:

 The downside of an official diagnosis would be higher private health and life insurance rates for the rest of your life due to having a pre-existing condition.

cyclinglady Grand Master
cyclinglady
Posted

Hi!

Genetic testing is used to help rule out celiac disease.  That is because about 35% of the population has the celiac genes.  That is a ton of people!  Only a few actually go on to develop celiac disease.  I am sorry that your were given such  poor advice.  
 

If you do have celiac disease, you may have have developed other health issues.  Many celiacs go on to develop other autoimmune diseases (Crohn’s, SIBO, gallbladder disease, etc.) or illness like cancer (rare).  
 

Continuing to adhere to a gluten free diet without seeing improvement is not good (for lack of a better word).  Either gluten continues to get into your diet or you have something else.  I urge you to see a doctor.  
 

know that you would need to get back on gluten for 6 to 12 weeks prior to a blood test.  But your GI might want to test you now anyway just to see if gluten is getting into your diet.  This is a conversation you should have with a Gastroenterologist.  He will know your whole health history.  
 

Let us know how it turns out.  

cyclinglady Grand Master
cyclinglady
Posted
(edited)
52 minutes ago, Scott Adams said:

If you've been happily gluten-free for 10 years I don't see any reason to start eating gluten again to be retested, unless you're not happy with the diet, and doubt your self diagnosis. If you need a diagnosis to stay on the gluten-free diet, then it probably makes sense to do a gluten challenge and eat gluten daily for 4-6 weeks for a celiac disease blood panel. Given how long you've been gluten-free it's possible you may need to eat gluten for a longer time, but here is more info on that:

 The downside of an official diagnosis would be higher private health and life insurance rates for the rest of your life due to having a pre-existing condition.

Whoa!  Slow down, Scott and read!  The OP has been gluten-free for 10 years.  The past two months she has been dairy and grain free.  Something is wrong!  

3 hours ago, Pegsc82 said:

I was diagnosed 10 years ago by genetic testing and symptoms, dr didn’t do bloodwork or endoscopy. I continue to have severe bloating , other digestive issues along with weight gain . I’ve been Gluten-free 10 years, dairy and grain free 2 months . Should I go get endoscopy and blood work now?

 

Edited by cyclinglady
Scott Adams Grand Master
Scott Adams
Posted
Quote

Whoa!  Slow down, Scott and read!  The OP has been gluten-free for 10 years.  The past two months she has been dairy and grain free.  Something is wrong! 

@cyclinglady I've got no idea what you mean here. I re-read her post, and my response, and every word of my reply stands. I fully understand the situation, she was never officially diagnosed, went gluten-free, and now is considering getting an official diagnosis. Did I miss anything?

Please explain?

Scott Adams Grand Master
Scott Adams
Posted

Also, if your diet has been 100% gluten-free for 10 years and you still have the same issues it's important for you to follow up and figure out what is going on. Definitely check with your doctor, which it sounds like you're already doing, and keep a food diary to identify other allergy/intolerance issues.

RMJ Mentor
RMJ
Posted

You could start with bloodwork, while on your current diet.  If positive, it would indicate a problem with gluten, either the diet still contains some, or you’re not responding to the gluten free diet.  However, if negative, it would not say anything about whether you have celiac disease because of being on the gluten free diet. 

If you’re having annoying symptoms a gastroenterologist visit would be recommended.

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cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, Scott Adams said:

@cyclinglady I've got no idea what you mean here. I re-read her post, and my response, and every word of my reply stands. I fully understand the situation, she was never officially diagnosed, went gluten-free, and now is considering getting an official diagnosis. Did I miss anything?

Please explain?

Maybe I am misinterpreting the OP’s post.  It certainly would not be the first time for me.  🤣. It sounds like she has been gluten free for 10 years and that her symptoms  have not resolved.  Why continue the gluten-free diet if it is not working?    That in itself is strange.  Let’s hope she comes back and provides more information.  

Pegsc82 Newbie
Pegsc82
Posted
  • Author
6 hours ago, cyclinglady said:

Hi!

Genetic testing is used to help rule out celiac disease.  That is because about 35% of the population has the celiac genes.  That is a ton of people!  Only a few actually go on to develop celiac disease.  I am sorry that your were given such  poor advice.  
 

If you do have celiac disease, you may have have developed other health issues.  Many celiacs go on to develop other autoimmune diseases (Crohn’s, SIBO, gallbladder disease, etc.) or illness like cancer (rare).  
 

Continuing to adhere to a gluten free diet without seeing improvement is not good (for lack of a better word).  Either gluten continues to get into your diet or you have something else.  I urge you to see a doctor.  
 

know that you would need to get back on gluten for 6 to 12 weeks prior to a blood test.  But your GI might want to test you now anyway just to see if gluten is getting into your diet.  This is a conversation you should have with a Gastroenterologist.  He will know your whole health history.  
 

Let us know how it turns out.  

No , you are correct .  I was diagnosed without endoscopy bc o had been no carb for awhile and he felt the test wouldn’t be accurate. I’ve never had all my issues resolved by going gluten-free. I’ve been very strict and believe it is something else . I’m going to see gastro doc . Thanks your input helps

5 hours ago, Scott Adams said:

@cyclinglady I've got no idea what you mean here. I re-read her post, and my response, and every word of my reply stands. I fully understand the situation, she was never officially diagnosed, went gluten-free, and now is considering getting an official diagnosis. Did I miss anything?

Please explain?

 

Pegsc82 Newbie
Pegsc82
Posted
  • Author
5 hours ago, Scott Adams said:

Also, if your diet has been 100% gluten-free for 10 years and you still have the same issues it's important for you to follow up and figure out what is going on. Definitely check with your doctor, which it sounds like you're already doing, and keep a food diary to identify other allergy/intolerance issues.

I’m making appt with gastro , Thank you

Scott Adams Grand Master
Scott Adams
Posted

Please let us know how things turn out!

Pegsc82 Newbie
Pegsc82
Posted
  • Author

I will

docaz Collaborator
docaz
Posted

There are recent studies suggesting that symptoms attributed to gluten are in fact related to complex sugars like fructan. You can take with every meal alpha-galactosidase enzymes which are very effective in breaking down complex sugars that the body can not break down. They are cheap and easily obtainable (Beano or the less expensive version Bean-zymes) and see if they help with the symptoms. These will also not negatively effect a gluten challenge because they have no effect on the gluten antibody testing. If they do not work, there is not much lost. https://pubmed.ncbi.nlm.nih.gov/29102613/

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