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

Test results and question about gluten challenge


chocolatesunrise

Recommended Posts

cyclinglady Grand Master

I agree with Rancher’s wife.  It really sounds like your GI is not very celiac-savvy.  ☹️

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 56
  • Created
  • Last Reply
Keight Enthusiast
On 9/30/2019 at 10:43 AM, Ranchers Wife said:

Maybe it's just me... but after all that you've been through, I would confirm that:

There were at least six biopsy samples from the duodenum sent to pathology

And

The biopsies shoe normal villous architecture according to the pathologist s magnified view

Before I would agree to more medical testing with this physician.

If it turns out that your doctor didn't take duodenal biopsy samples, don't go back! Is my advice. I'm not a doctor but if he's trying to diagnose or rule out Celiac by taking large intestine samples, he's not up on current Celiac diagnosis standards.

Agreed. All sounds rather confusing tbh. 

Link to comment
Share on other sites
chocolatesunrise Explorer

I completely agree. It has been very confusing. I live in a pretty rural area so I don’t have many options as far as doctors. I could go to a larger city center but I checked and it will be months before I can be seen. I think my current doctor just isn’t well versed in celiac unfortunately. My daughter has a number of medical problems and I have had to take her out if area to find doctors that could diagnose and treat her. Even now, if she has a flare and we go to the ER locally I have to bring articles describing her problems and the doctors are always baffled. I’ve yet to find any around here that have even heard of her diagnosis!!  Crazy and super frustrating. This has been a very frustrating and futile few months. Not to mention expensive!  And I feel like I have no more answers now than before I started all this. 

Link to comment
Share on other sites
mYstummyHurt Apprentice

this is so disheartening and also my biggest fear of testing. ive been dismissed by doctors many times so i feel your pain. so sorry this is happening to you. im making a doctors appt today to begin testing for celiac disease but i already know im NOT eating gluten for 6 week, no friggin way. i just learned that gluten was causing these, what i call painful "trapped gas" attacks ive been getting, so theres no way in hell im eating more gluten for 6 weeks, just so they can tell me "never eat gluten again".

does anyone know if there are any other tests that dont include poisoning yourself for 6 weeks???

Link to comment
Share on other sites
cyclinglady Grand Master
2 hours ago, mYstummyHurt said:

this is so disheartening and also my biggest fear of testing. ive been dismissed by doctors many times so i feel your pain. so sorry this is happening to you. im making a doctors appt today to begin testing for celiac disease but i already know im NOT eating gluten for 6 week, no friggin way. i just learned that gluten was causing these, what i call painful "trapped gas" attacks ive been getting, so theres no way in hell im eating more gluten for 6 weeks, just so they can tell me "never eat gluten again".

does anyone know if there are any other tests that dont include poisoning yourself for 6 weeks???

Sorry, there are no tests for celiac disease that do not require you to be on a full gluten diet.  You can get genetic testing, but that just narrows down your odds since about 35% of population carries the genes that MIGHT develop into celiac disease.  That is a lot of people!  

While I am formally diagnosed with celiac disease (7 years), my hubby is not. He went gluten-free 18 years ago based (on what we know today) poor advice from my allergist and his GP.  The diet worked.  Does he have celiac disease for sure?  We will never know because, like you, he refuses to do the challenge.  Also, what nut would remain gluten free for almost 20 years if the diet did not work?

He will tell you that I get way more support from family, friends and medical staff.  My diagnosis makes it easy to get our kid periodically tested for celiac disease even though she is asymptomatic.  Having a diagnosis has made it easier for me.  My doctors do not hesitate to test for other autoimmune, and illnesses related to celiac disease like osteoporosis.  You also have to be dedicated to making the dietary changes.  It is hard.  Really hard, but doable.  

I hope this helps you make the right decision for you.  Research is your best defense.  

 

 

Link to comment
Share on other sites
mYstummyHurt Apprentice
51 minutes ago, cyclinglady said:

Sorry, there are no tests for celiac disease that do not require you to be on a full gluten diet.  You can get genetic testing, but that just narrows down your odds since about 35% of population carries the genes that MIGHT develop into celiac disease.  That is a lot of people!  

While I am formally diagnosed with celiac disease (7 years), my hubby is not. He went gluten-free 18 years ago based (on what we know today) poor advice from my allergist and his GP.  The diet worked.  Does he have celiac disease for sure?  We will never know because, like you, he refuses to do the challenge.  Also, what nut would remain gluten free for almost 20 years if the diet did not work?

He will tell you that I get way more support from family, friends and medical staff.  My diagnosis makes it easy to get our kid periodically tested for celiac disease even though she is asymptomatic.  Having a diagnosis has made it easier for me.  My doctors do not hesitate to test for other autoimmune, and illnesses related to celiac disease like osteoporosis.  You also have to be dedicated to making the dietary changes.  It is hard.  Really hard, but doable.  

I hope this helps you make the right decision for you.  Research is your best defense.  

 

 

that makes sense but also hard to swallow. ive only been gluten free for about 3 weeks but i did accidentally ingest gluten a couple times during this period. do you think they would still be able to do the blood test now without me having to get back on gluten??

OP, sorry for hijacking your thread.

Link to comment
Share on other sites
cyclinglady Grand Master
1 hour ago, mYstummyHurt said:

that makes sense but also hard to swallow. ive only been gluten free for about 3 weeks but i did accidentally ingest gluten a couple times during this period. do you think they would still be able to do the blood test now without me having to get back on gluten??

OP, sorry for hijacking your thread.

Yes....it is possible.  Just get back on gluten (eat something yummy!) and get the test.  You can even go to a walk in lab and make the request and pay cash/credit.   You probably would not need to do a 6 to 12 week gluten challenge since you were off for only three weeks.    Most celiacs take a long time to heal, but in theory some can heal in little as two weeks.  Rare, but possible.  

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.



  • 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):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      @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
      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
      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
      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...