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
 Share

Recommended Posts

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?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Link to comment
Share on other sites
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.  

Link to comment
Share on other sites
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
Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.  

Link to comment
Share on other sites
Pegsc82 Newbie
Pegsc82
  • Author
Posted
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?

 

Link to comment
Share on other sites
Pegsc82 Newbie
Pegsc82
  • Author
Posted
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

Link to comment
Share on other sites
Scott Adams Grand Master
Scott Adams
Posted

Please let us know how things turn out!

Link to comment
Share on other sites
Pegsc82 Newbie
Pegsc82
  • Author
Posted

I will

Link to comment
Share on other sites
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/

Link to comment
Share on other sites

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
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,728
    • Most Online (within 30 mins)
      7,748
    Jessmn
    Newest Member
    Jessmn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      What do my test results mean?

      By knitty kitty · Posted

      @jmiller93, Some of us are seronegative and don't test positive on tTg IgA tests.  Anemia, diabetes, and Thiamine deficiency can cause false negatives on Celiac panels.  Have you been checked for nutritional deficiencies?  Iron? Thiamine?  Vitamin B12?  Vitamin D?  Only one Celiac markers is needed to develop the active disease.   I agree a gluten free diet trial is worth a try.
    • knitty kitty
      strange symptoms/ diagnosis accuracy

      By knitty kitty · Posted

      @HWB, Have you been checked for SIBO?  Small Intestinal Bacterial Overgrowth will cause constipation and chemically breath.   The best way to get rid of SIBO is to go on a ketogenic/Paleo diet, like the Autoimmune Protocol Diet.  It starves out the carbohydrate loving bacteria and allows good bacteria to repopulate the small intestine.   The SIBO bacteria can communicate with the brain along the gut-brain axis, making you crave carbs, and in return, the SIBO bacteria can mess with your immune system by lowering inflammation and producing endorphins.  So, it's no wonder you feel better eating sugar.   I took high dose (500-1000 mg/day) Benfotiamine (Thiamine) which promotes intestinal healing and helps keep bacterial in check.  Thiamine and Benfotiamine are safe and nontoxic even in high doses.  High doses (500-1000 mg) every day are required to get results.  The body responds differently to high doses.  Got rid of my SIBO like this.  It was tough, but Celiac makes you stronger.
    • Wheatwacked
      strange symptoms/ diagnosis accuracy

      By Wheatwacked · Posted

      Try whole milk yogurt.  I eat Stoneyfield vanilla.  Add fruit if you like.  Cultured Pasteurized Organic Whole Milk, Pectin, Vitamin D3. Live Active Cultures S. thermophilus, L. bulgaricus, Bifidobacterium BB-12®, L. acidophilus, L. paracasei and L. rhamnosus. Looking at the NO Fat Greek Yogurt, consider that to give the mouth feel of real yogurt ahd Manufacterers of no fat yogurt add various processed ingrediant that many Celiacs have digestive issues with such as gums.  Consider it processed food.  Fat is an important factor in our appestat to tell us we've eaten enough.  Remove fat and we eat more.  Compared to whole milk yogurt Chobani no fat greek yogurt has a cardboard mouth feel. Chobani no fat greek: Cultured Nonfat Milk, Cane Sugar, Black Cherries, Water, Fruit Pectin, Guar Gum, Natural Flavors, Cherry Juice Concentrate, Locust Bean Gum, Lemon Juice Concentrate. 6 Live and Active Cultures: S. Thermophilus, L. Bulgaricus, L. Acidophilus, Bifidus, L. Casei, and L. Rhamnosus Funny that since recommending low fat diets in the 1970's the US population has gone from 15% to 50% obese.
    • sh00148
      Nighttime Soiling (5 year old)

      By sh00148 · Posted

      Just had my daughter diagnosed and am currently awaiting blood test results for my son. As well as many bowel issues, mostly loose stools with mucus and lots of gassy moments sometimes leading to leaning stool, he has recently soiled himself in his sleep twice. He has been toilet trained for a long time, but is not waking up with the poo. It’s not just a little, it’s a lot.    We have had to make an appointment re his blood test results next week so will find out if it is coeliac too but I’m just wondering whether anyone else has had this? Ive read online that it could mean he’s constipated, but he poos all the time and it’s often soft, never hard. 
    • captaincrab55
      Scientists have discovered a cause of inflammatory bowel disease. They said it's a 'holy grail' discovery that could transform other autoimmune treatments.

      By captaincrab55 · Posted

      I know this isn't an IBS Forum, but it looks like they may have cracked the code on treating it.  They think the new discovery may make it possible to treat other autoimmune diseases.  Even if they develop a treatment I think I would continue eating strict gluten-free, but it may allow me to eat out gluten-free without the fear of being glutened.  That would be especially helpful when traveling.   I hope you find this article as promising as I did.   https://www.msn.com/en-us/health/other/scientists-have-discovered-a-cause-of-inflammatory-bowel-disease-they-said-it-s-a-holy-grail-discovery-
×
×
  • Create New...