Jump to content

  • 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

SLLRunner

Recommended Posts

SLLRunner Enthusiast
SLLRunner
Posted
  • Author

My appointment was this morning. The doctor looked at my results from Kaiser and said the correct tests were taken and I am negative for celiac, but that a biopsy of the intestine would be next. She said that many people are gluten sensitive and agreed with my last doctor that I should gut gluten if I feel better without it.

She said I have "a little IBS" with the alternating constipation and diarrhea , referred me to  the GI for a consult, and recommended a colonoscopy. 

I feel like I am back at square one again.

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

What?  I am confused.  Didn't Kaiser just run the TTG and the IGA deficiency test?  This new doctor is not going to run the full celiac panel, but will instead do the endoscopy and a colonoscopy?  

frieze Community Regular
frieze
Posted
4 hours ago, cyclinglady said:

What?  I am confused.  Didn't Kaiser just run the TTG and the IGA deficiency test?  This new doctor is not going to run the full celiac panel, but will instead do the endoscopy and a colonoscopy?  

money

SLLRunner Enthusiast
SLLRunner
Posted
  • Author
7 hours ago, cyclinglady said:

What?  I am confused.  Didn't Kaiser just run the TTG and the IGA deficiency test?  This new doctor is not going to run the full celiac panel, but will instead do the endoscopy and a colonoscopy?  

You are correct, those are the tests that Kaiser run.  The new doctor recommended a colonoscopy to check for IBD, but she did not recommend an endoscope. I, after all, do have the classic symptoms of IBD (as she said).

The PCP said the Kaiser test is what they run too, and if the numbers are not within the normal range they do the endoscope. 

Believe me, I am confused too.

Edited to add: oh, and she said the treatment for both celiac and gluten sensitivity are the same, so I really should give the gluten free diet a try if it makes me feel better. :blink:  I gotta tell you, that made me feel very valued.

SLLRunner Enthusiast
SLLRunner
Posted
  • Author
2 hours ago, frieze said:

money

Exactly, which is why I will offer to pay for the full panel.  I would rather be safe than sorry. 

Gemini Experienced
Gemini
Posted
1 hour ago, SLLRunner said:

Exactly, which is why I will offer to pay for the full panel.  I would rather be safe than sorry. 

I think it good that you are willing to put your money down for such important testing.....I did the same thing 11 years ago because I got tired of the bureaucracy and wait times. Never regretted that money spent!  But I think what frieze was referring to with her comment was the docs always push for the invasive testing because of the money they make from the procedures.  Liability plays into it also. You just need to do the full panel first, before anything else. That may give you the answers you need, without having to do the others. I am sorry you have had to deal with this.....I understand your frustration.  Good luck!

cyclinglady Grand Master
cyclinglady
Posted

You know, when helping/directing people to the appropriate tests for screening, I used to refer to NVSMOMs celiac blood panel list.  I liked the University of Chicago's celiac website, but they would only list the TTG IGA and IGA deficiency tests for screening.  I personally push for the full panel because I continue to test negative on the TTg tests even on follow-up testing (biopsies revealed a Marsh Stage IIIB).  

Today, the University of Chicago's testing page shows the full panel.  Why?  I think they realized that the TTG does not catch all celiacs.  

I still push for the full panel.  

I am sorry that you are getting the run-around SSLRunner.  You had such high hopes when you changed insurance.  

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted
5 minutes ago, cyclinglady said:

You know, when helping/directing people to the appropriate tests for screening, I used to refer to NVSMOMs celiac blood panel list.  I liked the University of Chicago's celiac website, but they would only list the TTG IGA and IGA deficiency tests for screening.  I personally push for the full panel because I continue to test negative on the TTg tests even on follow-up testing (biopsies revealed a Marsh Stage IIIB).  

Today, the University of Chicago's testing page shows the full panel.  Why?  I think they realized that the TTG does not catch all celiacs.  

I still push for the full panel.  

I am sorry that you are getting the run-around SSLRunner.  You had such high hopes when you changed insurance.  

It's about time that major Celiac centers are getting on board with the correct testing methods.......things we Celiacs have known for years.  I cannot tell you how many people I have met over 11 years who tested negative on the tTG, only to have the biopsy and be officially diagnosed.  They went through years of hell and frustration too.

If insurance companies are willing to shell out thousands of dollars for a colonoscopy/EGD, then there is no excuse for them refusing a full panel first, when the panel costs much, much less than the other invasive, popular tests!

squirmingitch Veteran
squirmingitch
Posted

Amen!

icelandgirl Proficient
icelandgirl
Posted

Everything Gemini said!!

I'm just wondering about ordering your own tests online?  I have not done this, if anyone has please chime in.  I found this website where you order and pay for it, they send you a lab req, you go get it done and get results.  It might be worth a try?

Open Original Shared Link

I know that you're getting discouraged.  Hang in there.  (((HUGS)))

RMJ Mentor
RMJ
Posted

I had my first celiac tests done through www.mymedlab.com.  They can't operate in all states.  In my area they actually use the same lab to perform the tests that lots of local doctors use.  I don't know if they have the Dgp test available in all areas.

SLLRunner Enthusiast
SLLRunner
Posted
  • Author
5 hours ago, icelandgirl said:

Everything Gemini said!!

I'm just wondering about ordering your own tests online?  I have not done this, if anyone has please chime in.  I found this website where you order and pay for it, they send you a lab req, you go get it done and get results.  It might be worth a try?

Open Original Shared Link

I know that you're getting discouraged.  Hang in there.  (((HUGS)))

Not a good option for me because of lack of trust due to this at their website:

Quote

Please note it is recommended that prior to taking this test, a regular diet including items that contain gluten should be followed for 2 weeks as a gluten-free diet may not provide an accurate representation of potential gluten sensitivity.

You're not supposed to stop eating gluten until all testing is complete.

frieze Community Regular
frieze
Posted

exactkt, Gem.

BergieF Explorer
BergieF
Posted

Has anyone ever heard of biopsy staining for those that have been on a gluten free diet?  My doctor recommend this to me since I have been been on a very restrictive gluten-free diet for 2 years.  The past 4 months I have been completely gluten-free since my daughter was diagnosed with celiac disease.  The full blood panel came back negative and the doctor told me to not eat gluten for the EGD that would be done.  The staining should pick it up.  I've never heard of this....

SLLRunner Enthusiast
SLLRunner
Posted
  • Author
On 7/7/2016 at 3:34 PM, BergieF said:

Has anyone ever heard of biopsy staining for those that have been on a gluten free diet?  My doctor recommend this to me since I have been been on a very restrictive gluten-free diet for 2 years.  The past 4 months I have been completely gluten-free since my daughter was diagnosed with celiac disease.  The full blood panel came back negative and the doctor told me to not eat gluten for the EGD that would be done.  The staining should pick it up.  I've never heard of this....

This study talks about staining 

Open Original Shared Link

But I don't see where it mentions staining done following a gluten free diet. 

SLLRunner Enthusiast
SLLRunner
Posted
  • Author

My GI consultation is August 30, and I am on a wait list to get in sooner if possible.  However, if it's not within the next few weeks, I will take things in my own hands and start a gluten free diet.

 

notme Experienced
notme
Posted

good thing y'all can't hear me because i am screaming obscenities - sllrunner, you've done everything right!!!!!!!!  i am truly starting to think that nobody is really taken seriously - ibs!!!   i heard that for 25 years!!!  doctors are either really, really stupid or this sort of DECEPTION is indeed encouraged by them!!!  GRRRRRR!!!!  :angry:  i'm so sorry you're going through this!!!  

and:  ps - anybody else told that the doctors 'discovered' when they did the endoscopy:  "you have a hiatal hernia"  i said i did not know that.  "sure, do you have a lot of burping?"  well, no, not really....  lo and behold, ever since then i have a lot of burping.......  i'm fairly sure they caused it?   i'm just curious because over the years i've just noticed many of us were told hiatal hernia.  

SLLRunner Enthusiast
SLLRunner
Posted
  • Author
3 hours ago, notme! said:

good thing y'all can't hear me because i am screaming obscenities - sllrunner, you've done everything right!!!!!!!!  i am truly starting to think that nobody is really taken seriously - ibs!!!   i heard that for 25 years!!!  doctors are either really, really stupid or this sort of DECEPTION is indeed encouraged by them!!!  GRRRRRR!!!!  :angry:  i'm so sorry you're going through this!!!  

and:  ps - anybody else told that the doctors 'discovered' when they did the endoscopy:  "you have a hiatal hernia"  i said i did not know that.  "sure, do you have a lot of burping?"  well, no, not really....  lo and behold, ever since then i have a lot of burping.......  i'm fairly sure they caused it?   i'm just curious because over the years i've just noticed many of us were told hiatal hernia.  

What's interesting, too, is that I was previously diagnosed with GERD and Gastritis, both of which seemed to have calmed down somewhat. When I was at the doctor, she asked how my GERD is and I told her it's pretty calm now and I'm not too worried about it anymore. Do you know what she put down as a diagnosis that day?  Heartburn.

Gee, I would think digestive problems would have been my dx, or even a possibility of IBS, or anything but.....heartburn.....because I told her it's hardly ever there anymore. 

I have often felt that doctors don't pay much attention. 

 

  • 1 month later...
SLLRunner Enthusiast
SLLRunner
Posted
  • Author

Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use. 

We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten.

He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens.

I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 

cyclinglady Grand Master
cyclinglady
Posted

Nice to have made progress!  ?

SLLRunner Enthusiast
SLLRunner
Posted
  • Author
12 hours ago, cyclinglady said:

Nice to have made progress!  ?

It sure is, it really is. 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
      2

      Could Gluten and Alzheimer’s Be Linked? New Research Uncovers Surprising Protein Parallels (+Video)

      Thiamine deficiency has been found in the brains of people with amyloid-beta plaques. Benfotiamine, a form of Thiamine, has been shown to prevent the formation of and remove those amyloid-beta peptides and plaques! Benfotiamine improves cognitive impairment and reduces inflammation. Benfotiamine helps improve blood glucose utilization. Malabsorption...
    2. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    3. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
    4. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
    5. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,835
    • Most Online (within 30 mins)
      7,748
    B Burgos
    Newest Member
    B Burgos
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.