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	<title>Comments on: Celiac Disease Prevalence and Mortality</title>
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	<description>Medical and Scientific News and Stories about Mayo Clinic</description>
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		<title>By: Debra</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1979</link>
		<dc:creator>Debra</dc:creator>
		<pubDate>Tue, 06 Oct 2009 21:22:54 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1979</guid>
		<description>I am trying to find out if I should be tested for celiacs. I have two sisters and our Mother who do have celiacs. I immediatly told my doctor. She said due to the fact that I had bariactric surgery in 2002, I do not need to worry about the disease because I do not use my small intestines anymore. Is this true? I am having some auto immune problems such as lichen planus, and stomach spasms to name a few. Do you know if by having bariatric surgery it would eliminate the worry of eating a gluten free diet? No one seems to know the answer to my questions. I am not sure my doctor knows enough about Celiacs to conclude that bariatric surgery excludes me from the disease. If you cannot answer this, can you direct me to someone who may know if this problem has ever been addressed? I would very much appreciate your help. Thank you very much, 

Debra Foster</description>
		<content:encoded><![CDATA[<p>I am trying to find out if I should be tested for celiacs. I have two sisters and our Mother who do have celiacs. I immediatly told my doctor. She said due to the fact that I had bariactric surgery in 2002, I do not need to worry about the disease because I do not use my small intestines anymore. Is this true? I am having some auto immune problems such as lichen planus, and stomach spasms to name a few. Do you know if by having bariatric surgery it would eliminate the worry of eating a gluten free diet? No one seems to know the answer to my questions. I am not sure my doctor knows enough about Celiacs to conclude that bariatric surgery excludes me from the disease. If you cannot answer this, can you direct me to someone who may know if this problem has ever been addressed? I would very much appreciate your help. Thank you very much, </p>
<p>Debra Foster</p>
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		<title>By: Lynn</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1713</link>
		<dc:creator>Lynn</dc:creator>
		<pubDate>Thu, 06 Aug 2009 02:53:34 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1713</guid>
		<description>Hi Carol -- very interesting. I wonder how many others are out there have a similar antibiotic history to usl? Many of your other symptoms from your post (below) are identical to mine. I too have a heart murmur (diagnosed Mitral Valve Prolapse) which started occurring about the same time as my other Celiac symptoms &amp; has actually dramatically improved since going gluten-free. I also had fatigue, joint pain, a rosacea-type rash, food sensitivities, etc... which have all improved 90-100% since going gluten-free. Thank god my doctor figured this out!</description>
		<content:encoded><![CDATA[<p>Hi Carol &#8212; very interesting. I wonder how many others are out there have a similar antibiotic history to usl? Many of your other symptoms from your post (below) are identical to mine. I too have a heart murmur (diagnosed Mitral Valve Prolapse) which started occurring about the same time as my other Celiac symptoms &amp; has actually dramatically improved since going gluten-free. I also had fatigue, joint pain, a rosacea-type rash, food sensitivities, etc&#8230; which have all improved 90-100% since going gluten-free. Thank god my doctor figured this out!</p>
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		<title>By: Carol</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1709</link>
		<dc:creator>Carol</dc:creator>
		<pubDate>Wed, 05 Aug 2009 23:02:17 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1709</guid>
		<description>Very interesting comment Lynn!  (I read it just after submitting my post below.)

I had Scarlet Fever in first grade (I&#039;m now in my mid 40&#039;s)and after that illness I was on antibiotics regularly as a child for recurring Strep throat, ear and sinus infections.  I also have a heart murmur that developed after that illness and have had to be pre-medicated with yet more antibiotics before dental/surgical procedures.  I too have issues with Candida.  Ugh!

I will read the abstract and article you posted.  Thank you!

And &quot;I second&quot; your request to Dr. Murray/Mayo Clinic to *Please* do a study on the Candida/Celiac connection.</description>
		<content:encoded><![CDATA[<p>Very interesting comment Lynn!  (I read it just after submitting my post below.)</p>
<p>I had Scarlet Fever in first grade (I&#8217;m now in my mid 40&#8217;s)and after that illness I was on antibiotics regularly as a child for recurring Strep throat, ear and sinus infections.  I also have a heart murmur that developed after that illness and have had to be pre-medicated with yet more antibiotics before dental/surgical procedures.  I too have issues with Candida.  Ugh!</p>
<p>I will read the abstract and article you posted.  Thank you!</p>
<p>And &#8220;I second&#8221; your request to Dr. Murray/Mayo Clinic to *Please* do a study on the Candida/Celiac connection.</p>
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		<title>By: Carol</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1707</link>
		<dc:creator>Carol</dc:creator>
		<pubDate>Wed, 05 Aug 2009 22:46:04 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1707</guid>
		<description>Dear Dr. Joseph Murray, M.D.,

I question how accurate the screening blood tests for Celiac Disease are.  Here&#039;s why:

I was finally diagnosed with Celiac Disease after a long struggle with my health.  Major fatigue, severe joint pain, horrible constipation, inability to lose weight, food sensitivities, rashes, sinus and ear infections...the list goes on.  I was under the care of a major, highly respected teaching medical facility.  I was told after many tests that I had IBS (Irritable Bowel Syndrome) and I should eat more fiber and whole grains.  Needless to say, my health did not improve.  I kept going back to my doctor and was told that perhaps I should see a therapist and get on anti-anxiety drugs.

I knew I was not crazy!  I physically felt horrible!!!

I think &quot;mainstream&quot; medicine (including specialists) miss-diagnosed me because they have the symptoms of Celiac as being diarrhea and weight loss.  I had the total opposite.  If there&#039;s one thing I&#039;d like to get across to &quot;mainstream&quot; doctors/specialists out there it&#039;s that the lack of those two symptoms should not rule out Celiac Disease as a diagnosis.

Very discouraged with &quot;mainstream&quot; medicine, I was directed to an M.D. that practices something called &quot;Functional Medicine&quot;.  After going over my medical records and history she suggested that I do a stool culture.  She said that she felt that all of my issues were related to my digestive tract.  Wow, I thought, this doctor gets it!!!  The constipation that I experienced was so uncomfortable!  The results of the stool test came back with a high marker on sensitivity to the protein gluten.  I&#039;d never heard of that before.  With that result, she wanted to do some blood work that looks for the antibody found in Celiac Disease.  The results showed WEAK positive (I had been eating gluten regularly prior to and at the time of the testing).  She consulted with a G.I. specialist who suggested I have an endoscopy which is the &quot;gold standard&quot; for diagnosing Celiac Disease.

I had the endoscopy procedure.  The results showed SEVERE villious atrophy!!!  Diagnosis: Celiac Disease.  The G.I. specialist said that he would not have put my screening blood test (which showed WEAK positive) together with the SEVERE biopsy results.  This concerns me tremendously!  Just how accurate is the blood test?  Have you experienced similar results in your practice?  Could a person&#039;s blood who has been dealing with Celiac for a long period of time somehow not show the severity or even be false negative?  I want to bring this to your attention being that you are an expert on Celiac Disease research.

After my diagnosis, I did a bunch of reading and found out that the disease could be related to genetics.  I wanted to find out if I had the genetic marker(s) associated with Celiac Disease.  I had the genetic blood test done through my G.I. specialist and the results showed that I have the DQ2 gene and got it from one parent.

With those genetic results, my G.I. specialist recommended that my family members get tested.

My Mother has Type 1 Diabetes, rashes, fatigue, over-weight issues, joint pain, Gout etc.

I sent information with her to have her doctor test her for Celiac.   Her doctor&#039;s comment was,  &quot;You do not have Celiac Disease.&quot;  But she eventually ordered the screening blood test for my Mother which did show a negative result.

My Sister has terrible diarrhea, rashes, fatigue, over-weight issues.  She also was tested and the results, negative.

I&#039;m very concerned that they both have Celiac Disease and perhaps the blood test is missing it.  Is this possible?  (Just a note, I made sure to inform them that they needed to be eating gluten for the test results to be accurate and they both were eating wheat at the time the tests were taken (they are still eating gluten).)

Frustrated, I encouraged my Mother to talk with her doctor about having the genetic blood test done to see if she or my father were the carrier of the gene and perhaps to give her doctor the heads-up to test her on a yearly basis if she was the carrier of the gene.  Her doctor told her that the test was not covered by her insurance and that it would be very expensive.  No progress.

Without positive results on the blood test, an endoscopy is not advised.  I fear that my family members are walking around with, as you say in your video, &quot;a silent killer&quot; and I wanted to ask you about the blood test accuracy.  Again, my blood test showed WEAK positive and yet I had SEVERE damage to my small intestine.  How can that be???  And what is the best thing I can do to help my ill family members.  You said in your video that they should not go on a gluten-free diet before being tested and diagnosed.

Have you published the specific recommended blood tests that one should have to be screened for Celiac Disease?  If so, it would be great to know where to find that information.  I want to make sure that my family members are getting the proper tests.  I&#039;ve been reading about new stool cultures possibly being more accurate than the blood tests?  Your expert opinion would be greatly appreciated!

I&#039;m feeling tremendously better on a gluten free diet!  So glad I was finally, correctly diagnosed!</description>
		<content:encoded><![CDATA[<p>Dear Dr. Joseph Murray, M.D.,</p>
<p>I question how accurate the screening blood tests for Celiac Disease are.  Here&#8217;s why:</p>
<p>I was finally diagnosed with Celiac Disease after a long struggle with my health.  Major fatigue, severe joint pain, horrible constipation, inability to lose weight, food sensitivities, rashes, sinus and ear infections&#8230;the list goes on.  I was under the care of a major, highly respected teaching medical facility.  I was told after many tests that I had IBS (Irritable Bowel Syndrome) and I should eat more fiber and whole grains.  Needless to say, my health did not improve.  I kept going back to my doctor and was told that perhaps I should see a therapist and get on anti-anxiety drugs.</p>
<p>I knew I was not crazy!  I physically felt horrible!!!</p>
<p>I think &#8220;mainstream&#8221; medicine (including specialists) miss-diagnosed me because they have the symptoms of Celiac as being diarrhea and weight loss.  I had the total opposite.  If there&#8217;s one thing I&#8217;d like to get across to &#8220;mainstream&#8221; doctors/specialists out there it&#8217;s that the lack of those two symptoms should not rule out Celiac Disease as a diagnosis.</p>
<p>Very discouraged with &#8220;mainstream&#8221; medicine, I was directed to an M.D. that practices something called &#8220;Functional Medicine&#8221;.  After going over my medical records and history she suggested that I do a stool culture.  She said that she felt that all of my issues were related to my digestive tract.  Wow, I thought, this doctor gets it!!!  The constipation that I experienced was so uncomfortable!  The results of the stool test came back with a high marker on sensitivity to the protein gluten.  I&#8217;d never heard of that before.  With that result, she wanted to do some blood work that looks for the antibody found in Celiac Disease.  The results showed WEAK positive (I had been eating gluten regularly prior to and at the time of the testing).  She consulted with a G.I. specialist who suggested I have an endoscopy which is the &#8220;gold standard&#8221; for diagnosing Celiac Disease.</p>
<p>I had the endoscopy procedure.  The results showed SEVERE villious atrophy!!!  Diagnosis: Celiac Disease.  The G.I. specialist said that he would not have put my screening blood test (which showed WEAK positive) together with the SEVERE biopsy results.  This concerns me tremendously!  Just how accurate is the blood test?  Have you experienced similar results in your practice?  Could a person&#8217;s blood who has been dealing with Celiac for a long period of time somehow not show the severity or even be false negative?  I want to bring this to your attention being that you are an expert on Celiac Disease research.</p>
<p>After my diagnosis, I did a bunch of reading and found out that the disease could be related to genetics.  I wanted to find out if I had the genetic marker(s) associated with Celiac Disease.  I had the genetic blood test done through my G.I. specialist and the results showed that I have the DQ2 gene and got it from one parent.</p>
<p>With those genetic results, my G.I. specialist recommended that my family members get tested.</p>
<p>My Mother has Type 1 Diabetes, rashes, fatigue, over-weight issues, joint pain, Gout etc.</p>
<p>I sent information with her to have her doctor test her for Celiac.   Her doctor&#8217;s comment was,  &#8220;You do not have Celiac Disease.&#8221;  But she eventually ordered the screening blood test for my Mother which did show a negative result.</p>
<p>My Sister has terrible diarrhea, rashes, fatigue, over-weight issues.  She also was tested and the results, negative.</p>
<p>I&#8217;m very concerned that they both have Celiac Disease and perhaps the blood test is missing it.  Is this possible?  (Just a note, I made sure to inform them that they needed to be eating gluten for the test results to be accurate and they both were eating wheat at the time the tests were taken (they are still eating gluten).)</p>
<p>Frustrated, I encouraged my Mother to talk with her doctor about having the genetic blood test done to see if she or my father were the carrier of the gene and perhaps to give her doctor the heads-up to test her on a yearly basis if she was the carrier of the gene.  Her doctor told her that the test was not covered by her insurance and that it would be very expensive.  No progress.</p>
<p>Without positive results on the blood test, an endoscopy is not advised.  I fear that my family members are walking around with, as you say in your video, &#8220;a silent killer&#8221; and I wanted to ask you about the blood test accuracy.  Again, my blood test showed WEAK positive and yet I had SEVERE damage to my small intestine.  How can that be???  And what is the best thing I can do to help my ill family members.  You said in your video that they should not go on a gluten-free diet before being tested and diagnosed.</p>
<p>Have you published the specific recommended blood tests that one should have to be screened for Celiac Disease?  If so, it would be great to know where to find that information.  I want to make sure that my family members are getting the proper tests.  I&#8217;ve been reading about new stool cultures possibly being more accurate than the blood tests?  Your expert opinion would be greatly appreciated!</p>
<p>I&#8217;m feeling tremendously better on a gluten free diet!  So glad I was finally, correctly diagnosed!</p>
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		<title>By: Lynn</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1683</link>
		<dc:creator>Lynn</dc:creator>
		<pubDate>Mon, 03 Aug 2009 23:30:12 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1683</guid>
		<description>Thank you for this interesting study! The increased occurrence of Celiac disease is shocking, isn&#039;t it? Your clinic should investigate the possible role of antibiotic use/overuse (a recent phenomenon) in connection with Celiac. I was on antibiotics (500mg tetrocycline 3x per day for 10 years -- unbelievable, huh?) for acne back in the 80s. I later had to be treated for Candida problems, and now have gluten intolerance/Celiac.

A study was done which found a connection between Candida and Celiac. The study found the protein in Candida to be remarkably similar to the protein found in gluten that triggers the autoimmune reaction.

Here is the abstract and an article:
http://www.ncbi.nlm.nih.gov/pubmed/12826451
http://www.denvernaturopathic.com/news/celiac.html

Anyway, antibiotic abuse may eventually be found to be the smoking gun in the increase in Celiac cases. *Please* do a study on this!</description>
		<content:encoded><![CDATA[<p>Thank you for this interesting study! The increased occurrence of Celiac disease is shocking, isn&#8217;t it? Your clinic should investigate the possible role of antibiotic use/overuse (a recent phenomenon) in connection with Celiac. I was on antibiotics (500mg tetrocycline 3x per day for 10 years &#8212; unbelievable, huh?) for acne back in the 80s. I later had to be treated for Candida problems, and now have gluten intolerance/Celiac.</p>
<p>A study was done which found a connection between Candida and Celiac. The study found the protein in Candida to be remarkably similar to the protein found in gluten that triggers the autoimmune reaction.</p>
<p>Here is the abstract and an article:<br />
<a href="http://www.ncbi.nlm.nih.gov/pubmed/12826451" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmed/12826451</a><br />
<a href="http://www.denvernaturopathic.com/news/celiac.html" rel="nofollow">http://www.denvernaturopathic.com/news/celiac.html</a></p>
<p>Anyway, antibiotic abuse may eventually be found to be the smoking gun in the increase in Celiac cases. *Please* do a study on this!</p>
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		<title>By: linda</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1674</link>
		<dc:creator>linda</dc:creator>
		<pubDate>Fri, 31 Jul 2009 22:09:37 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1674</guid>
		<description>Deneen

I live in St. Louis,MO and I work for the National Foundation for Celiac Awareness.  Your family sounds as if they have multiple symptoms of celiac.  I can help you find a doctor in your area who understands celiac.  Where in MO do you live?

Linda</description>
		<content:encoded><![CDATA[<p>Deneen</p>
<p>I live in St. Louis,MO and I work for the National Foundation for Celiac Awareness.  Your family sounds as if they have multiple symptoms of celiac.  I can help you find a doctor in your area who understands celiac.  Where in MO do you live?</p>
<p>Linda</p>
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		<title>By: How The Internet Is Changing Health Care &#8211; Forbes.com &#171; Social Networking with Dan Calloway</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1673</link>
		<dc:creator>How The Internet Is Changing Health Care &#8211; Forbes.com &#171; Social Networking with Dan Calloway</dc:creator>
		<pubDate>Fri, 31 Jul 2009 18:32:33 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1673</guid>
		<description>[...] Mayo Clinic who notes that the hospital promoted the study with explanatory video and audio clips on its own blog as well as on Facebook and YouTube. &#8220;We want to provide the ability to have a [...]</description>
		<content:encoded><![CDATA[<p>[...] Mayo Clinic who notes that the hospital promoted the study with explanatory video and audio clips on its own blog as well as on Facebook and YouTube. &#8220;We want to provide the ability to have a [...]</p>
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		<title>By: David Cain</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1672</link>
		<dc:creator>David Cain</dc:creator>
		<pubDate>Fri, 31 Jul 2009 17:18:34 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1672</guid>
		<description>Following current theories about this condition, I can&#039;t help but wonder if the increased incidence of Celiac disease could be related to some type of viral intervention. There is emerging evidence that a gene, IGRM, that is directly related to Crohn&#039;s/Celiac disease, has recently been resurrected after being inactivated millions of years ago by a human endogenous retrovirus:

&quot;For 25 million years, the IRGM gene was effectively dead. But then, in the common ancestor of humans and the great apes, something unexpected happened. The gene somehow regained its ability to produce a protein, albeit a shortened one. The gene had been resurrected, and ironically enough, its saviour was another genetic hitchhiker that inserted itself in just the right place.&quot;

This may very well be the first documented examples of gene death and rebirth. It would seem to follow that there could be a link with HERVs, the IRGM gene, and the recent increase in gluten intolerance and Crohn&#039;s disease.

I would be curious to hear people&#039;s comments about this theory.</description>
		<content:encoded><![CDATA[<p>Following current theories about this condition, I can&#8217;t help but wonder if the increased incidence of Celiac disease could be related to some type of viral intervention. There is emerging evidence that a gene, IGRM, that is directly related to Crohn&#8217;s/Celiac disease, has recently been resurrected after being inactivated millions of years ago by a human endogenous retrovirus:</p>
<p>&#8220;For 25 million years, the IRGM gene was effectively dead. But then, in the common ancestor of humans and the great apes, something unexpected happened. The gene somehow regained its ability to produce a protein, albeit a shortened one. The gene had been resurrected, and ironically enough, its saviour was another genetic hitchhiker that inserted itself in just the right place.&#8221;</p>
<p>This may very well be the first documented examples of gene death and rebirth. It would seem to follow that there could be a link with HERVs, the IRGM gene, and the recent increase in gluten intolerance and Crohn&#8217;s disease.</p>
<p>I would be curious to hear people&#8217;s comments about this theory.</p>
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		<title>By: Patient or Reporter – The Lines Are Blurring &#124; diagnosisprblog.com</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1671</link>
		<dc:creator>Patient or Reporter – The Lines Are Blurring &#124; diagnosisprblog.com</dc:creator>
		<pubDate>Fri, 31 Jul 2009 14:07:01 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1671</guid>
		<description>[...] Rebecca Ruiz, explains how the Mayo Clinic out of Rochester, Minn used Twitter to tease an upcoming study on celiac disease. They followed the folks re-tweeting the news and chose a select few to share the [...]</description>
		<content:encoded><![CDATA[<p>[...] Rebecca Ruiz, explains how the Mayo Clinic out of Rochester, Minn used Twitter to tease an upcoming study on celiac disease. They followed the folks re-tweeting the news and chose a select few to share the [...]</p>
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		<title>By: Kellene Barbee</title>
		<link>http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1642</link>
		<dc:creator>Kellene Barbee</dc:creator>
		<pubDate>Thu, 23 Jul 2009 03:13:41 +0000</pubDate>
		<guid isPermaLink="false">http://newsblog.mayoclinic.org/?p=1851#comment-1642</guid>
		<description>I was diagnosed with Stystemic Lupus several years ago. Since then I developed Chronic Anemia that I have to be treated with six weeks of IV iron every few months. Trying to find the cause of my anemia I was tested for Celiac Disease. I tested possitive for the antibodies so I had a biopsy of my small intestine. My hemotologist stated that they found no sprue, so I didn&#039;t have Celiac and that was not the cause of my problems.  I don&#039;t understand why I read that there is a blood test for it and I tested positive, yet I don&#039;t have Celiac. Does everyone have a biopsy prior to their diagnosis? Iam very confused. 

Thank you</description>
		<content:encoded><![CDATA[<p>I was diagnosed with Stystemic Lupus several years ago. Since then I developed Chronic Anemia that I have to be treated with six weeks of IV iron every few months. Trying to find the cause of my anemia I was tested for Celiac Disease. I tested possitive for the antibodies so I had a biopsy of my small intestine. My hemotologist stated that they found no sprue, so I didn&#8217;t have Celiac and that was not the cause of my problems.  I don&#8217;t understand why I read that there is a blood test for it and I tested positive, yet I don&#8217;t have Celiac. Does everyone have a biopsy prior to their diagnosis? Iam very confused. </p>
<p>Thank you</p>
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