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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.

 

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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.

Edited by SLLRunner

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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!

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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.  

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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!

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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?

http://requestatest.com/how-it-works

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

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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.

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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?

http://requestatest.com/how-it-works

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.

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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....

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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 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4481451/

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

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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.

 

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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.  

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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. 

 

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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. 

Edited by SLLRunner

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