Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Diagnoses


Pegsc82

Recommended Posts

Pegsc82 Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

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

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
(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
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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
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
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
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

Please let us know how things turn out!

Pegsc82 Newbie

I will

docaz Collaborator

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/

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,380
    • Most Online (within 30 mins)
      7,748

    Username
    Newest Member
    Username
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mrs Wolfe
      Thank you.  I’ll be sure to look into those. 
    • Katerific
      I was diagnosed with microscopic colitis and celiac a couple of years ago.  The GI doctor prescribed a course of budesonide, which moderately helped until I tapered off.    After a lot of ups and downs over the course of 2 years, I am finally in microscopic colitis remission.  Since I am also diabetic, I was started on metformin and Jardiance.  Metformin by itself helped moderately.  I added Jardiance and I was much better.  I stopped the metformin and relapsed and when I added it back, I regained remission.  I think metformin and Jardiance helped my colitis because they reduce inflammation in the gut.  Metformin is known to favorably modulate the gut microbiome and reduce inflammatory cytokines.  Similarly, emerging evidence supports the anti-inflammatory properties of SGLT2 inhibitors like Jardiance.  Once I was on both, the diarrhea stopped completely, even though nothing else ever worked long-term.  There is a Facebook group that can be very informative and helpful.  Look for "Microscopic Colitis and Lymphocytic Colitis Support Group.  You will find that members of the Facebook group identify other pathways to remission of microscopic colitis.
    • knitty kitty
      Hello, @Mrs Wolfe, I crushed three vertebrae moving a chest of drawers.  I take a combination of Thiamine Vitamin B1, Vitamin B12, and Pyridoxine B6.  Together these vitamins have an analgesic effect.  I think it works better than OTC pain relievers.   I also like  "Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets" .   It's all three vitamins together in one pill.  Works wonderfully!
    • knitty kitty
      It's the Potassium Iodide in the HRT pills that is triggering Dermatitis Herpetiformis and the increased IGG levels.   The thyroid is stimulated by the Potassium Iodide, which stimulates immune cells to make more IGG antibodies.   Thiamine Vitamin B1 helps the thyroid function.  I like Benfotiamine and TTFD Thiamax.  
    • Mettedkny
      @Scott Adams Xiromed is one of the generic manufacturers of Progesterone pills.
×
×
  • Create New...