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Negative Biospy! So Confused Please Help


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#1 KristinIrwin

 
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Posted 16 March 2013 - 07:17 AM

Hi! I'm Kristin.

 

Okay, so i started having GI symptoms in October 2012 (Mostly constipation, bloated, gas, cramps- the works). I have also lost about 12 pounds since october.  I went to the GI on February 22, he told be I had IBS and did some blood work. They called me a few days later and said my blood work was "elevated for celiac and to try a gluten free diet and see how I feel, then come back in April." (Now, I know that the only test he ran was the ttg- so annoying). So I went off gluten for four days. I felt SO good. I was so shocked at how much better my symptoms got so fast. Then a few days later they called me back and said that they actually wanted to do a biopsy to be sure. So I went BACK on gluten, and felt worse again.

The nurse told me I could eat gluten in moderation, so in the 2 weeks leading up to my biopsy I was very gluten light. I ate it almost everyday, but only in small amounts.

 

I had my biopsy last Wed. Afterwards he said "the small intestines looks pretty good, but there are some signs indicative of celiac disease". So i waited for the biopsy and they called me yesterday and said my biopsy was negative! I'm so confused!

 

I know elevated ttg is seen in other things, but I'm just so confused as to why I feel so much better off of gluten.

 

Is it possible that I do have celiac and that my doctor missed the damage in the biopsy? Could my intestine have healed by being very gluten light for two weeks, or is my celiac maybe in early enough stages that the damage isn't evident?

 

Do you guys think I should go off of gluten for a while and see what happens?

 

Sorry this is long, but any help would be greatly appreciated!

 

Kristin


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#2 1desperateladysaved

 
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Posted 16 March 2013 - 08:37 AM

Hi Kristin,

 

If I understood correctly you went gluten free before the biopsy.  Healing could have happened during that time of being gluten free.  Well, healing would be a good thing.  But your biopsy could have been false negative.  Two weeks of light gluten may have not been enough.  Here are some questions:

 

Do you have a reaction if you accidentally consume gluten?  I reread and yes is the answer.

 

Do you have any nutritional deficiencies?  Your weight loss could be a sign of it.

 

If you want to get a proper diagnosis you will have to do a gluten challenge and eat gluten for some time before checking.  You may decide to do that.  My diagnosis was by genetic testing and response to the diet.  I did the genetic test when I realized that I could never eat gluten again on purpose.  If this is your choice, it was a good choice for me.  IF your body is telling you that it does not like gluten you and your doctor should believe it.

 

I hope you get a definative diagnosis.  Most of all I hope that your GI problems will go away, and your belly won't be bloated.  Then I hope that you will get well.   ***  Those stars are the best flowers that I have learned how to make.

 

Diana


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#3 KristinIrwin

 
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Posted 16 March 2013 - 07:29 PM

Diana,

 

Thank you for the reply and all of your kind wishes! I have not been tested for nutritional deficiences.  My doctor mentioned that it was a possibilty when I told him about my weight loss, but he didn't do any tests to look for it. Maybe I need a new doctor..

 

 

Anyway, I think I am going to try a strict gluten free diet and see how it makes me feel over time. If it has already helped me improve this quickly, hopefully it will keep getting better!

 

Thank you again!

Kristin


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#4 nvsmom

 
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Posted 17 March 2013 - 04:16 PM

Doctors do miss damaged parts during a biopsy if the damage is patchy. I think you are wise to start eating gluten-free again. If you respond well to the diet, I would assume that the positive ttg test you had was from celiac and stay gluten-free for life.

Best wishes.
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#5 masterjen

 
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Posted 17 March 2013 - 04:51 PM

Other intestinal conditions can have symptoms similar to celiac disease, and also improve somewhat on a gluten-free diet.  Two such conditions I know of are colitis and eosinophilic esophagitis (my spelling is probably a bit off).  If the biopsy is negative, make sure you Dr. pursues alternative diagnosis so you can get the proper help.


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#6 Takala

 
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Posted 18 March 2013 - 04:26 AM

Make them give you written copies of all the tests and the biopsy report...   this is extremely important.  I would also request a follow up visit with this doctor to discuss why he said immediately after the procedure there were some signs of celiac.   Once you go off of gluten full time and completely, it is very difficult to get a medically confirmed diagnosis because the diagnostic "gold standard" is still the positive biopsy (in the U.S.) even with the positive blood test.  You also need to ask the doctor how many biopsy specimens did he take because it IS possible to miss early/beginning patchy celiac damage if they take only a few.   People with inconclusive test results post here frequently, who go off of gluten, then realize what a commitment it is, still don't feel "good" because they have to clean up other food/health issues and aren't sure what to do, then they come back and make up excuses as to why they should resume eating gluten again for a retest, then the retest comes out negative, then they try to convince themselves they don't really have a gluten problem.   But they do.  Gluten can be very addictive, and the resulting "leaky gut" with celiac can cause havoc with all these other types of food, giving you (temporary) intolerances.

 

After you get your real test information wrangled out of this doctor's office, and get an official recommendation/opinion of what to do next, (don't let them just try to give you IBS meds or something even more ridiculous, and wtf is this about not testing you for nutrient levels, and has anyone checked you for bone loss ?) then you can figure out if you want to pursue a diagnosis with another doctor or just do a trial gluten free diet to see how you respond to it.   Because if you see another doctor in the future, he/she may really be interested in that positive ttg and may be willing to diagnose you (or at least acknowledge you really are a gluten intolerant and not a funky dieter)  if you have some other symptoms crop up that make it much more likely to be celiac.  

 

Meanwhile, welcome to Club Undiagnosed.   :rolleyes:


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#7 KristinIrwin

 
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Posted 18 March 2013 - 07:04 AM

Thanks everyone! The doctor's nurse is suppose to call me today and let me know what he wants the next step to be. I will definitely ask for electronic copies of all of my results.

 

Takala, The ONLY tests he has done are blood test: ttg, CBC, and something for my thryoid. And obviously the upper endoscopy. However, they took 4 tubes of blood, so I guess he tested something else? When I asked him what he blood tested for, it was right before my upper endoscopy and he just kind of shrugged me off. I feel like none of these doctors/nurses are taking me seriously because I'm only 19! Damn docs.

 

 

ANYWHO,

They just seem so unconcerned about the positive ttg. Should I be concerned about this? I mean obviously something is wrong right? Why else would there be "changes in my small intestines indicative of celiac"?

 

CAN ANBODY TELL ME EXACTLY WHAT THIS POSITIVE TTG MEANS? I've read so many different things. I know it can be seen in celiac, ibd, and other autoimmune diseases, but what exactly does an elevated ttg mean?

 

Thanks again guys!

Kristin


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#8 guest134

 
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Posted 18 March 2013 - 09:28 PM

People with inconclusive test results post here frequently, who go off of gluten, then realize what a commitment it is, still don't feel "good" because they have to clean up other food/health issues and aren't sure what to do, then they come back and make up excuses as to why they should resume eating gluten again for a retest, then the retest comes out negative, then they try to convince themselves they don't really have a gluten problem.   But they do.  Gluten can be very addictive, and the resulting "leaky gut" with celiac can cause havoc with all these other types of food, giving you (temporary) intolerances.


What? So people have inconclusive tests and follow up tests come back negative while their not so related to Celiac symptoms DO NOT improve on a gluten free diet and you think that it means they are just in denial about having Celiac? This, as many of your posts do, shows how little you know about the blood tests or OTHER diseases/issues that go on in the intestinal tract. So if someone has a positive TTG, negative biopsy, no improvement on a gluten free diet, return to gluten with no symptoms and have follow up tests while eating gluten for several weeks which come back negative they have Celiac? Did you really type that out, look at it, and thought it made sense? In the case you just described there are SEVERAL diseases that can elevate a blood test, so instead of looking at other things like Crohn's, autoimmune liver the person should just fixate on a single blood test and disregard that they do not improve on a gluten free diet while ignoring a more logical cause that could do them harm if not treated? Yeah, that makes a lot of sense. 

Sounds like your "Doctors say anything over 10 on blood test is early diagnosis of Celiac." Kristin, please ignore Takala, he/she likes to just make ridiculous blanket statements, really makes it sound like everyone has Celiac.

What researchers are now starting to notice as the TTG tests have been around on the market longer and more research/clinical trials have been completed is that it is not as specific to Celiac as once thought. That being said you COULD still have Celiac that was missed, especially if you noticed symptom improvement that quickly. There is a long list of intestinal issues that can elevate the blood tests including infections. It is hard to say in your case since you went off gluten and only ate a bit prior to the endoscopy, the damage could have been so minimal that it was missed but it is important to know what is going on in your body not to miss anything that can cause complications if left ignored.

The list of TTG elevations includes (but is not limited to):
Celiac
Thyroid autoimmune, both hashimoto's and Graves
Autoimmune liver
Type 1 diabetes
Infections - Surprisingly both intestinal and no intestinal - http://www.ncbi.nlm....les/PMC2810390/
Chronic liver cirrhosis - http://www.ncbi.nlm....ubmed/15936306 
Congestive heart failure - http://consults.blog...celiac-disease/
Crohns
Ulcerative Colitis
A few other intestinal issues that I can't recall right now
Pretty much any other autoimmune disease


I linked a few articles to give you a better understanding, I have quite a few more if you need more info on a specific cause. The causes of most elevations would be pretty obvious like infections and their sudden onset of symptoms, congestive heart failure, type 1 diabetes. Some however are not so obvious and that is why anyone with any understanding of blood tests will tell you that the TTG IgA is not solely specific to Celiac. It is important to also have the titre, in high tires other causes are less likely where as mild elevations need to be looked at further. It is unfortunate that your doctor told you to go gluten free before getting more tests in as now you are left wondering. Hopefully you find your answer soon and if going gluten free makes you feel better than do it, who is to tell you otherwise?


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#9 shadowicewolf

 
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Posted 19 March 2013 - 05:26 AM


What? So people have inconclusive tests and follow up tests come back negative while their not so related to Celiac symptoms DO NOT improve on a gluten free diet and you think that it means they are just in denial about having Celiac? This, as many of your posts do, shows how little you know about the blood tests or OTHER diseases/issues that go on in the intestinal tract. So if someone has a positive TTG, negative biopsy, no improvement on a gluten free diet, return to gluten with no symptoms and have follow up tests while eating gluten for several weeks which come back negative they have Celiac? Did you really type that out, look at it, and thought it made sense? In the case you just described there are SEVERAL diseases that can elevate a blood test, so instead of looking at other things like Crohn's, autoimmune liver the person should just fixate on a single blood test and disregard that they do not improve on a gluten free diet while ignoring a more logical cause that could do them harm if not treated? Yeah, that makes a lot of sense. 

Sounds like your "Doctors say anything over 10 on blood test is early diagnosis of Celiac." Kristin, please ignore Takala, he/she likes to just make ridiculous blanket statements, really makes it sound like everyone has Celiac.

What researchers are now starting to notice as the TTG tests have been around on the market longer and more research/clinical trials have been completed is that it is not as specific to Celiac as once thought. That being said you COULD still have Celiac that was missed, especially if you noticed symptom improvement that quickly. There is a long list of intestinal issues that can elevate the blood tests including infections. It is hard to say in your case since you went off gluten and only ate a bit prior to the endoscopy, the damage could have been so minimal that it was missed but it is important to know what is going on in your body not to miss anything that can cause complications if left ignored.

The list of TTG elevations includes (but is not limited to):
Celiac
Thyroid autoimmune, both hashimoto's and Graves
Autoimmune liver
Type 1 diabetes
Infections - Surprisingly both intestinal and no intestinal - http://www.ncbi.nlm....les/PMC2810390/
Chronic liver cirrhosis - http://www.ncbi.nlm....ubmed/15936306 
Congestive heart failure - http://consults.blog...celiac-disease/
Crohns
Ulcerative Colitis
A few other intestinal issues that I can't recall right now
Pretty much any other autoimmune disease


I linked a few articles to give you a better understanding, I have quite a few more if you need more info on a specific cause. The causes of most elevations would be pretty obvious like infections and their sudden onset of symptoms, congestive heart failure, type 1 diabetes. Some however are not so obvious and that is why anyone with any understanding of blood tests will tell you that the TTG IgA is not solely specific to Celiac. It is important to also have the titre, in high tires other causes are less likely where as mild elevations need to be looked at further. It is unfortunate that your doctor told you to go gluten free before getting more tests in as now you are left wondering. Hopefully you find your answer soon and if going gluten free makes you feel better than do it, who is to tell you otherwise?

On the reverse side, if you test negative to all of the other possibilities outside of celiac, than its likely that you do have it.


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#10 guest134

 
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Posted 19 March 2013 - 07:08 AM

On the reverse side, if you test negative to all of the other possibilities outside of celiac, than its likely that you do have it.

Yeah but there is a long list of things to investigate before claiming someone is "just in denial". It looks to me like the original poster probably has Celiac but I find Takala constantly makes posts that are so ignorant and inflammatory so I was going after that. To just group everyone who has looked at a wide spectrum of issues WITH their doctors and ruled at Celiac as just in denial would be no different than if someone said everyone on this forum is just extremely bitter that they have Celiac so they want to believe everyone else to have it to feel less alone and isolated, simply just to comfort themselves. We are just in denial about how rare the disease is. Do you see how that comes across?


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#11 nvsmom

 
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Posted 19 March 2013 - 08:01 AM

.
What researchers are now starting to notice as the TTG tests have been around on the market longer and more research/clinical trials have been completed is that it is not as specific to Celiac as once thought. That being said you COULD still have Celiac that was missed, especially if you noticed symptom improvement that quickly. There is a long list of intestinal issues that can elevate the blood tests including infections. It is hard to say in your case since you went off gluten and only ate a bit prior to the endoscopy, the damage could have been so minimal that it was missed but it is important to know what is going on in your body not to miss anything that can cause complications if left ignored.

The list of TTG elevations includes (but is not limited to):
Celiac
Thyroid autoimmune, both hashimoto's and Graves
Autoimmune liver
Type 1 diabetes
Infections - Surprisingly both intestinal and no intestinal - http://www.ncbi.nlm....les/PMC2810390/
Chronic liver cirrhosis - http://www.ncbi.nlm....ubmed/15936306 
Congestive heart failure - http://consults.blog...celiac-disease/
Crohns
Ulcerative Colitis
A few other intestinal issues that I can't recall right now
Pretty much any other autoimmune disease
 

 

There is a long list of problems indicated by a positive ttg IgA but remember that the ttg IgA is up to 95% specific to celiac - meaning if 100 people have a positive ttg IgA, 95 of them will be celiacs. I have seen (somewhere) that the specificity of ttg to celiac is as low as 75% but i can't find that info again...The following link discuses the ttg test:

http://www.ncbi.nlm....pubmed/15825123

 

Chances are that you are a celiac but a further test to confirm would probably be helpful. You could consume gluten again and have blood tests again or consider going 100% gluten-free for at least 3-6 months as another test to confirm celiacs.

 

Here is a rather complex discussion of ttg in celiac disease:

http://journals.lww...._disease.5.aspx

 

This is according to wikipedia (not the most reliable I know):

Anti-tissue transglutaminase

Antibodies to tissue transglutaminase (ATA or anti-tTG) are found in patients with several conditions, including coeliac disease, juvenile diabetes,[1]inflammatory bowel disease,[2] and various forms of arthritis.[3][4]

In Coeliac Disease, ATA are involved in the destruction of the villous extracellular matrix and target the destruction of intestinal villous epithelial cells by killer cells. Deposits of anti-tTG in the intestinal epithelium predict coeliac disease.[5]

 

Here's something else I found:

Tissue transglutaminase is an enzyme that repairs damage in the body. People with celiac disease often make antibodies that attack tissue transglutaminase. They are called anti-tissue transglutaminase antibodies, or immunoglobin A (IgA) antibodies. Therefore, a blood test that shows higher levels of anti-tissue transglutaminase antibodies can help your doctor figure out if you have celiac disease.


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#12 guest134

 
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Posted 19 March 2013 - 11:46 AM

There is a long list of problems indicated by a positive ttg IgA but remember that the ttg IgA is up to 95% specific to celiac - meaning if 100 people have a positive ttg IgA, 95 of them will be celiacs. I have seen (somewhere) that the specificity of ttg to celiac is as low as 75% but i can't find that info again...The following link discuses the ttg test:

http://www.ncbi.nlm....pubmed/15825123

I agree that it is more specific to Celiac than any other disease but there is a point to looking at it by a patient by patient basis. Theoretically 95 out of 100 patients with elevated TTG have Celiac but the University of Chicago used these theories to also swing the ball the other way:

"tTG are thought to be 97-98% specific, but by definition this means that 3 in 100 persons who don’t have celiac disease will have elevated tTG (biological variations, nothing more). If you consider that celiacs are 1% of the general population, it follows that out of 100 persons tested for tTG: 1 has celiac disease and 3 do not. This could mean that only 1 out of 4 of those with positive antibodies will have celiac disease as the cause." - http://www.curecelia...luten-free-diet

The study you read with 75 percent specificity may have come from me, I had an article on hospitalized patients with life threatening infections/conditions not related to Celiac and although they did end up finding some undiagnosed Celiac they also saw high elevations during hospital stay. These antibodies also respond to inflammation, I recall talking to a surgeon at a dinner gathering once and he brought up how they use  some specific autoantibodies to help them know how the surgery went. For example, people undergoing intestinal removal and receiving ostomy bags have a high rate of elevated TTG.


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#13 KristinIrwin

 
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Posted 19 March 2013 - 02:41 PM

Hi all. My doctor finally called (well, his nurse).

 

She said that they saw "some patchy spots" that look like they could be celiac in my small intestines. But she said that since the biopsy was negative they can't be sure.My doctor says I shouldn't worry and to come back for my April 5th appointment and that we'll talk more then.

 

She also said that my doctor said that my elevated ttg could be from a gluten sensitivity...which I have never understood to be true.

I'm just even more confused now.

 

Any thoughts?

 

Kristin


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#14 GottaSki

 
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Posted 19 March 2013 - 03:01 PM

My thought is now that all your testing is complete -- remove all sources of gluten for at least three months - six is better.

 

The tests are not perfect - as for those "patchy" spots -- make sure you get the written copy of the pathology report -- in addition to a written copy of the doctor's procedure report.

 

Good Luck -- let us know how it goes or if you have more questions :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 Takala

 
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Posted 19 March 2013 - 04:25 PM

...."but I find Takala constantly makes posts that are so ignorant and inflammatory so I was going after that."

 

 

..... please ignore Takala, he/she likes to just make ridiculous blanket statements, really makes it sound like everyone has Celiac.

 

  "get copies of test results...."  "you also need to ask the doctor" "get an opinion of what to do, next " 

 

 

 

 

:rolleyes:  :rolleyes:  :rolleyes:  :rolleyes: 


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