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Understanding Conflicting Celiac Test Results

I want to do a followup on a recent post I made where I shared some of my own gluten sensitivity journey, including some of my son’s.  Toward the middle of this post there is some important information regarding the interpretation of intestinal biopsies that I urge you to read.

I had Sam first tested for celiac disease at age 3, not because he was exhibiting symptoms, but more for a “baseline,” if you will.  Sam’s test came back normal and I was thankful for that.  I asked his pediatrician when I should have him tested again (not knowing if he carried the gene or not), and his doctor said he would never have to be tested again because his negative blood test meant he would never get it.  That statement did not sit well with me as I had read otherwise on numerous occasions, but because I was still in my infancy of learning about the disease that I had been diagnosed with just two years prior, I didn’t have the courage to challenge someone who went to medical school.

Fast forward a couple of years after having gone through a separate medical odyssey with my youngest son (I was convinced Luke had CD because he exhibited several of the “classic” symptoms).  I still have nightmares over subjecting him to all the blood tests, at one point it took 4 nurses to hold down an 18 month old baby to get a blood draw (and this mom really should have been sedated)!

It was during this time, that Sam began to develop a real problem with constipation and I would spend hours sitting on the floor of the bathroom trying to comfort him as he strained in agonizing pain. He was also having severe joint pain (a.k.a. “growing pains”) that kept him up at night. I also began to see the canker sores that plagued me as a child.  I decided it was time to ask his doctor to run the celiac blood panel again, which he kindly humored me and ordered it.

I vividly remember the days when Luke and Sam’s blood tests came back, Luke’s on November 23 and Sam’s on the 24th (which also happened to be my 35th birthday, which is why I remember).  The evening of November 23rd, when the pediatric GI’s office called to say that Luke was negative for celiac disease and that he didn’t even carry the gene for it, I was thrilled but surprised (although his gene tests have a couple of pronounced question marks on them):

POST UPDATE (5/24/2010): I want to share an article by Dr. Scot Lewey, a board certified gastroenterologist, titled “Understanding the Genetics of Gluten Sensitivity,” that I found extremely helpful for better understanding Luke’s gene test.

When the pediatrician’s office called the next day (my birthday of all days) with Sam’s results, I remember answering the phone and the first indication that something was “off,” was the fact it was Dr. C himself on the other end, and not a nurse.  When he told me Sam’s blood test was positive (for EmA and tTG antibodies), my heart sank.  As soon as we hung up, I called to schedule the biopsy.

Several days after the procedure, Dr. N (Sam’s pediatric GI), called me with the news that his biopsy came back negative.  WHAT??

Could it be possible that his blood tests for antiendomysial and anti-tissue transglutaminase antibodies produced “false positive” results?

The following is from the American Celiac Disease Alliance website (emphasis added):

The blood tests can be divided into 2 different types of antibodies: those which are “anti-gluten”, and those that “anti-self”.  The “anti-gluten” antibodies are the anti-gliadin IgG and IgA.  Ig stands for “immunoglobulin” or “antibody”.  The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase IgA.  The tissue transglutaminase IgA antibody is often abbreviated as “tTG”.  Each antibody test varies widely in its sensitivity and specificity for predicting whether the disease is present in any individual.  It must be remembered that NO test in medicine is correct 100% of the time in each person!

There are also several conditions which may yield false negative antibody results. A false negative means that the patient actually has the disease, but the test result is negative. One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency. If a patient has a low total IgA level, the antibodies may be falsely low. This is why I always recommend that a patient have a total IgA level drawn at the same time the antibody testing is done. Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results. To continue reading, click here.

Okay, so false negatives are possible, what about false positives?

Again, the following is from the American Celiac Disease Alliance website:

Since tTG had been first described as the autoantigen of celiac disease in 1997, it has been utilized to develop innovative diagnostic tools. The tTG IgA ELISA test is highly sensitive and specific. The tTG assay correlates well with EMA-IgA and biopsy. However, it represents an improvement over the antiendomysial antibody assay because it inexpensive, rapid, is not a subjective test, and can be performed on a single drop of blood using a dot-blot technique. One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition. TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune disease.

Note: Type 1 Diabetes and Autoimmune Hepatitis have been linked to celiac disease.

Had it not been for my own biopsy-confirmed diagnosis of celiac disease and dermatitis herpetiformis, I would have jumped for joy at the news Sam’s biopsy came back “negative” and went on my merry way.  Because I do have them, and they are genetic, any of the screening tests that come back positive in my children give me great cause for concern.  This is why I asked Dr. N point blank, “If this were your child, what would you do?”  He kindly said he would put Sam on the GF diet immediately.  I was so appreciative of that, because I know he didn’t have to say it.  He could have easily said, “come back and see me if Sam starts to develop more symptoms and we can do this process all over again.”

I didn’t want to do that, I didn’t want to keep subjecting him to repeated blood tests and invasive biopsies.  I didn’t want to wait until other chronic diseases and conditions took over his little body, the way they have mine.  I also didn’t want the stress of always wondering and waiting.  Most of all though,  I wanted him to live life as a healthy little boy without the anxiety of medical procedures lurking around every corner, the way they did for me from the time I was 2 years old.

I will admit that I have had some fleeting doubts if I am doing the right thing, most notably when Sam goes to a birthday party or some other event where food is involved.  To see the look in Sam’s eyes when he has to pull out his own food, kills my heart.  I suppose it is this guilt that pushes me over the top when it comes to making gluten-free copycats of popular kid fare (GF Lunchables, Goldfish Crackers, etc.).  On some level, I have been trying to make it up to him.

I am now happy to say that my doubts have been erased.  I have recently been given an enormous opportunity and the privilege of corresponding via email with Dr. Ron Hoggan, Ed.D., co-author of the book Dangerous Grains and editor of the Journal of Gluten Sensitivity (available on celiac.com).  It is a true testament to Ron’s obvious passion for the subject of gluten sensitivity (as well as his kind teacher’s heart), that he actually responded to an email I sent him seeking help to put the pieces of my own gluten sensitivity puzzle together.  He could have easily responded with a “buy my book for the answers” statement, but he has gone far and above that!  I am not alone in experiencing Dr. Hoggan’s generosity, click here to read about Shirley Braden’s (of Gluten Free Easily) experience with him.

I asked Ron his thoughts on Sam’s conflicting test results and the following were his observations as to why Sam’s biopsy could have comeback negative (my emphasis added to #4):

1. The pathologist who examined them does not follow the Marsh system or one of its derivatives;

2. The biopsies were not well oriented, which makes the pathologist’s job extremely difficult;

3. The pathologist did not count intra-epithelial lymphocytes;

4. The pathologist failed to suggest celiac disease. Some gastros will not interpret the pathologist’s report. If the pathologist does not suggest celiac disease, they just assume that there is no cause to suspect it. Some pathologists, on the other hand, view their job as describing their findings rather than suggesting a diagnosis. I think you can see how this could lead to biopsy results being clearly positive but a breakdown in communication between the pathologist and the gastro might lead to the patient (or his mom) being told that the biopsy was negative.

5. The tTG can sometimes give a false positive but intestinal damage diagnostic for celiac disease does not develop until a few months or even a year or two later.

WOW!

That was when I knew I had to read his book.  As soon as it arrived, I devoured the information. For me, this book helped to connect many dots that have only further given me the confidence, validation, and overall peace of mind that I am doing the right thing for my son.

I really wish I had read this book prior to Sam’s biopsy, so I could have asked more in-depth questions about the “negative” results.  Had I not had the courage to ask Dr. N the next question, Sam would probably still be eating gluten today because I would have fallen prey to all the people in my life that have said, “why would you do that to Sam without a definitively positive celiac disease diagnosis?”

The following is taken directly from the book Dangerous Grains, under the section titledSlow Acceptance and Implementation of New Knowledge,” pages 9 – 10. I have found it to be a great explanation as to why this process can be so confusing, difficult and frustrating.

Not only is the publication and dissemination of new knowledge painfully slow, most health professionals are slow to adopt new ideas from current research. This results in lengthy delays in the application of research to treatment, with patients suffering needlessly and dying prematurely in the interim.

There are a number of reasons for this unfortunate situation.  Medical practitioners are often so overworked that many of them simply do not have the time to keep up to date on major medical breakthroughs.  Even when doctors can devote some part of their busy days to studying current literature, it is literally impossible for one to keep up with the tens of thousands of international articles published monthly.  For example, there are between ten and twenty thousand medical journals and newsletters published annually.  The busy doctor must therefore prioritize which articles he will study.  Predictably, most journals and reports will be set aside and never read. Studies dealing with the health hazards of grains will most always be among those that are ignored. Many see such articles as highly specialized, esoteric, and impractical.  Physicians’ poor training, often a decade or two behind the times, will have created the bias that gluten sensitivity is a trivial, rare aberration.  Following the old adage “common diseases occur most commonly,” most practitioners will choose to devote their time to studies and diseases that they believe are more likely to benefit a greater number of their patients.  Hence, gluten sensitivity and celiac disease have been disregarded as irrelevant.

The evidence and research that James Braly, M.D. and Ron Hoggan, Ed.D., lay out in Dangerous Grains is compelling.  At the back of the book, there is a list of research sources 28 PAGES LONG!  There is even a piece on pages 10 – 11 titled “How This Book Can Help You and Your Doctor,” which details how you can obtain copies of the peer-reviewed literature cited in the sources section, since doctors are much more likely to read this type of literature.

The book also covers the following topics:

The history of grains and people

The types of celiac disease and non-celiac gluten sensitivity

Testing for gluten sensitivity in all its forms

Life After Gluten: this section covers everything from dealing with a physical addiction to gluten, informed aftercare, optimal nutrition on a GF diet, dietary supplementation, and dietary dangers.

The Cancer Connection

Gluten, Molecular Mimicry and Autoimmune Disease

Osteoporosis and Gluten

Brain Disorders and Gluten

Bowel Diseases and Gluten: including IBS, Crohn’s, Colitis and more.

Where to from Here? Research, Theories and Treatments

This book is an absolute MUST READ for anyone dealing with celiac disease, non-celiac gluten sensitivity, chronic conditions and illness.  I believe wholeheartedly in the information outlined in this book, that I’ve already purchased 5 copies to give to my physicians, and I am going to buy 5 more to giveaway to a few of my fabulous readers

**This giveaway is now closed.**


This giveaway is now closed but you can still purchase a copy of Dangerous Grains on Amazon or at your local bookstore.  I cannot recommend it enough and I wish it had been the first book I read after my diagnosis in 2005.  It has answered so many questions for me, as well as opening my eyes to other dietary dangers that I was not aware of before.

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Comments

  1. Casey says:

    Wow, thanks for sharing the story on how your kids ended up following in your GF footsteps. I'm always interested to know how other people get to that point.

    We never went through with the blood tests for our kids (although I'd love to know), but we did get positive results from Enterolab for my son and the DNA swab showed that he got the marker for Celiacs from both my husband and I. That was all we needed to know so we didn't continue on and do the biopsy. Luckily, he was only 3 when we diagnosed him so he really doesn't know too much about the other gluten-filled goodness that exists out there and is mostly happy with the GF choices he gets. We didn't have my daughter tested but she's on a GF diet too. I had the blood test on myself but it came back negative. Not sure I believe the results though since I have a lot of GI and other problems that could be pointed in that direction…

    Please sign me up for the giveaway, I'd love to read more about Dr Hoggan's book!

  2. Tai says:

    Your journey is so fascinating to me! I guess because most of us with Celiac's disease are on our own similar journey and it helps knowing we aren't alone. I haven't been biopsied but my dr. didn't feel the need since I had a confirmed Celiac child, and very high Ttg and IGA levels. I want to read this book so badly because of all that you have said about it! I want to know more about this disease so I can share more with others. I feel like I know enough to keep us safe, but maybe not enough to help others find out if they could be sensitive or Celiac's themselves. Espicially the sensitivity part…I need to know more about that. My other two kids came back negative but I want to have them re-tested in a couple years, complete with the genetic's test.

  3. Tai says:

    Facebooking now! You will see it shortly :)

  4. Amie says:

    Thank you for sharing all of this journey. We too had conflicting results for my then-2yo daughter and decided to go ahead with the GF diet. We saw improvement immediately.

    I would like to win a copy just to keep educating myself about celiac and gluten sensitivities. We get asked a lot of questions and it would be nice to have another reference under my belt.

  5. Amie says:
  6. Kim says:

    Holy cow, Heidi (I was going to say Holy crap, but that would be too literal because of why I am commenting;0) ). Conner, too, had total constipation issues and "growing pains". I did not even list that in my story about him before because that part of the process could have had a page written about it in itself! His entire body would shake as he was trying to go the bathroom. He would have tears streaming down his face whenever he would go (sometimes only going 2 times/week). It was so sad and painful for him. My stomach would literally be sick just thinking about it. I had him on every supplement and oil I could think of. I tried Miralax (which is horrible for you), enemas, and suppositories. It was miserable for us for about 6 months!

    He also would wake up with joint and leg pains all of the time. And now I can totally tell if he gets accidentally glutened, because he will get a canker sore and sore legs about 2-3 days after his accidental exposure (does not happen often anymore because I am so vigilent, but when it does, those are my sure signs.

    I will totally tweet and FB about this, but do not include me in the giveaway ;0)

    I already have 2 copies of his book and have given it as gifts to most of my fam.

    Talk soon

    Kim
    http://www.cookitallergyfree.com

  7. I was diagnosed by blood test and biopsy confirmed on Feb. 12,'10. I wish I would have known yrs ago that CD is hereditary, weird though…Grandma and aunt have CD but my mother does not, well lets say it's not active. I've had digestive problems my whole life. I had some of the typical CD symptoms and some not so typical. Like all the tummy problems, migraines, joint pain and locking hands, unexplained rashes(now explainable),epilepsy as a child,Lethargy, and unexplained anemia(now explained) which has vanished after only 3 months of GFREE diet and iron pills…YAY! I am interested in reading any and all literature about CD and gluten issues b/c of my recent diagnosis which is why I would love to win this book! By the way my birthday is May 28th, I will be a whopping 24! :P

  8. I tweeted about your giveaway and included the link…I am @newfoundceliac

  9. I shared this giveaway on facebook and included the link. I am listed as Elaine Kamoss

  10. I shared this giveaway on gluten free faces and included the link. I am listed as Elaine Kamoss.

  11. Iris says:

    Great giveaway! This book would be helpful for me to understand all the different levels of gluten sensitivity. My tests came out negative for a wheat allergy and for Celiac Disease, so I've had trouble convincing people in my life how strict I have to be. But when I eat gluten, I become a completely different, despondent person. So I stay completely away no matter what the tests say.

  12. Debra Gowlland says:

    What a story! Knowledge is key when it comes to celiac disease…more often than not-patients themselves know more than the doctors. I have found that out myself thru personal experience. Both of my kids had the genetic testing done at the time of my diagnosis and both carry the genes to develop the disease. They both had the tTG testing done and were negative. Your post makes me question it all-my daughter has symptoms-not sure if the total IgA level was drawn at the same time? I'm going to be checking on that one. Thanks for the information. I would love to receive a copy of the book! It's been almost 2 years since diagnosis and I still want to "gobble up" all the knowledge I can get my hands on. Thanks.

  13. Hillary says:

    I can so relate about wondering if you are doing the right thing. I chose a g/f diet for myself after suffering a variety of neurological symptoms. Even though my blood test was borderline positive, my doc was not open to the possibility. Now, my daughter shows all the signs your son had and I often wonder if whe would benefit from a g/f diet as well. I would love a copy of this book to further confirm that my choice was the right one.

  14. Regarding the DNA testing performed on the HLA-DQ beta 1 gene:

    The alleles listed are 0601 and 0624 or o633. Regardless, both alleles are HLA-DQ1. This may seem confusing, but the bottom line is this:

    HLA-DQ1 alleles are gluten sensitive but not celiac genes. It is important to note that gluten sensitivity and celiac disease are not the same thing. Gluten sensitivity is a state of genetics that leads to disease if ignored. One of the disease triggered by gluten sensitive genes is celiac, but there are 190 diseases now linked in medical literature. Below is a link to a video that goes through the explanation in greater depth.
    http://www.glutenfreesociety.org/video-tutorial/g

    Excellent post by the way!

    All the best,

    Dr. O

  15. Renee says:

    Excellent sleuthing, Heidi!!!

    It is very frustrating how variable celiac disease and celiac testing can be. Hopefully one day there will be an easy and definitive way to diagnose people that takes all the variables out of it. In the meantime so many people will continue to be sick – that is the sad part.

    My brother is in medical school and he says he hears a lot about celiac but I also wonder if they are really being taught how variable the symptoms are.

    After my celiac diagnosis 15 years ago, I realized how much we all have to be our own (and your children's) advocate when we know something is not right and the doctors don't have a satisfactory answer for us. I think that is why there has been such increased interest in alternative medicine. We'll keep searching for answers until we're satisfied!

    Great post, Heidi!

    PS: love the new look!

  16. Jill says:

    Thanks for all the info! This book would be so helpful to me right now. In the last 4 months two of my 4 children have been diagnosed with Celiac Disease via blood test and biopsy. My other two children have had blood tests for Celiac Disease. One came back negative and we are still waiting for the results of the other. I have also been tested and it came back negative but I decided to go off of gluten anyway because I had so many of the symptoms. I am still confused about where to go from here. I asked my doctor about doing genetic testing to see who is a carrier of a gene and who could possibly still develop Celiac. This book may just answer all of my questions and give me the dialog I need to talk with my kids GI doctor. crossing my fingers!!

  17. Tanya says:

    Thank you so much for this story. I only discovered in the last 2 years (I am 50) my gluten-intolerance. Though I have never been tested I am certain beyond a doubt that I have celiac. In spite of years of GF cooking for several close friends with celiac, and knowing that my sister was at least gluten intolerant, I never really had reason to suspect it in myself. It was a change in GERD medication that brought on troublesome GI symptoms that I had never had my whole life. As an experiment I went GF and within days noticed improvement. Within about 2 months I discovered that the GERD medication I had been taking daily for 6 years was no longer required at all. Many people spontaneously commented on how my skin was "glowing", and how young I looked. My mood improved. For the first time in decades I had no chronic joint pain (I sometimes cried at night for the pain in my shoulders, and it hurt to have my husband hold my hand.) My eczema cleared up. The unbearable itchy, burning, bleeding anus that had plagued me for decades disappeared. Nineteen months into my GF journey, I continue to discover symptoms disappearing that I had come to simply accept as part of being me.

    Celiac and gluten-free blogs like yours have become a very significant part of my learning journey. I am so grateful to you and other bloggers for the service you do all of us. I have learned a great deal and this has helped not only me, but my friends and family members who are newly dealing with these issues. I have been able to pass on a great deal of useful knowledge, and helpful tips about remaining gluten-free. Truly, what you are providing has a huge "ripple effect". With support from you and others, I have been able, in turn, to offer loads of support to others.

    Thank you.

  18. Angela says:

    I was diagnosed with Celiac 1.5 years ago and this spring made the call to get my kids tested. We aren't seeing many symptoms but you know being paranoid it helped to see the negative numbers (at least for now). I'd love to learn more about it so the book sounds great!

  19. Anna says:

    LOVE the information you share Heidi and have shared your story often. My sisters blood has come back with high TTGs so I've had blood drawn on both Ella and Luke and am awaiting results. Will keep you posted.

    I would like to win a copy of the book as I have lent mine to my sister and have a slew of other people I'd like to introduce the book to.

  20. ourGFfamily says:

    Wow, what an amazing story. You are so lucky your doctor is so proactive. I have talked to so many kids whose celiac is missed even though the parents have diagnosed celiac. Once the genes are active, they can easily be triggered. Here is a post with youtube video of amazing story on Medical Mysteries: http://whattofeedyourkids.blogspot.com/2009/10/se

    I LOVE Dangerous Grains. I have two copies of this book which I have given away to people I felt needed the information so I would love to win this giveaway. I will post and tweet etc.

  21. Miranda says:

    I have an older brother with very obvious physical handicaps, since he was so sick as a child, everything I had in comparison was seen as nothing. Luckily my symptoms didn't get horrible until I was older and could push for answers myself. It's taken some time, after some broad answers like IBS, and pushing on my part to find something more definitive. I’m still working through it all, but reading that other people struggled to find answers helps. I’m also a researcher. Every time something new comes up, I’m searching the internet and the library for more information. I haven't read this book yet, so would love to win the giveaway. Thanks!

  22. Kari says:

    Wow, what a story. Educate, educate, educate yourself in all areas of your or your child's health. This has done nothing but help us in our health journeys as well. Having a child that's GF, this book sounds awesome.

  23. Kari says:

    I shared this on my Facebook page. There are a few people I think have gluten issues that could really benefit from your site.

  24. Kari says:

    I shared this on my site. The link is included in my information, then look at my "Special Kid, Special Needs, Special School" blog if you want to verify.

  25. Anna says:

    Tweeted Heidi!

  26. Anna says:
  27. Anna says:

    Shared on my Facebook :)

  28. Sarah McLean says:

    Heidi,

    Thank you for such an excellent and informative posting!

    I saw Enterolab mentioned in the comments and I felt I had to write. Enterolab has never had their findings published in a peer-reviewed medical journal. It's not to say that the tests are not accurate, but if the tests are so good, then why hasn't Dr. Fine been able to find a journal to publish his findings from 2003??

    I work in the medical field, and the overwhelming opinion of some of the top experts in the field is that there are many false positives with the Enterolab tests for celiac disease and gluten sensitivity. If one truly feels better eating a gluten-free diet after negative blood and biopsy results, then by all means follow the diet, but I would not trust Enterolab's tests until there is published data proving that they are accurate. It worries me that Dr. Fine has not found a journal to publish any of his findings from as far back as 2003. I only want my children to eat a gluten-free diet if it is beneficial to their health – otherwise I want them not to worry about it!

  29. Maria Boone says:

    From what I'm reading I think I NEED this book!

  30. Michelle says:

    I am new to your blog and I love it so far. As a mom with a two year old with Celiac and myself being gluten intolerant it is always nice to "meet" others in the same boat. I really feel that we need to share as much info with each other and others to get the word out. I have not heard of this book and would love to read it and spread the word!

    Thanks for the opportunity to win it!

  31. Michelle says:

    I Facebooked this post!

  32. Michelle says:

    I tweeted it as well! http://twitter.com/cookforothers

  33. Michelle says:

    I also blogged about it. :)

  34. Maggie says:

    Okay woman, when is your book coming out? Seriously! I bet you will one day. I'd buy it :) I want this book because you're telling me it's awesome and I believe everything you say! xx

  35. Becky Stow says:

    I am in a similar boat with my two kids. None of us have actually received a diagnosis since we went gluten free before getting tested, but all three of us carry the gene and I am terrified that they will develop the long list of issues that I had. (We did enterolab testing and reading the one comment about questioning their results has me worried all over again). Thus we are all gluten free. I wrestle with whether or not this is the right thing for them but I guess I will let them choose when they are older since they haven't been officially diagnosed. My son did jump from the 3rd percentile in the growth charts to the 25th (in the year after going gluten free) so I do have some concrete evidence with him. I hope in the future we the science will help us, either with different ways to diagnose or even ways to deal with it. It has gotten so much easier but I do feel sorry for my kids sometimes. If it's not this, though, it would be something else – I hope that I am saving them from many of those issues since celiac (and gluten sensitivity) can lead to all kinds of problems. Thanks for sharing your story!

  36. mjrooney says:

    My daughter is in her mid twenties and having a lot of auto immune problems. They haven't definitively been able to diagnose her problem. They think she has the beginning of rheumatoid arthritis and one of the things I've read says that a gluten free diet can change help. Fortunately she has caught this in the beginning stages so I would like to have her read this book and gain more understanding of what grain can do to people.

  37. Allison says:

    I found your blog today. I was just diagnosed with Celiac disease a week and a half ago, and am currently awaiting blood test results for my 17 month old daughter. As I'm beginning this new GF journey (for myself, and possibly my daughter), any new info is helpful!

  38. CC says:

    My mother was just diagnosed with Celiac's and as I've share before, the official diagnosis for me is "gluten sensitive". I want some data!

  39. Jennifer C says:

    I would really love a copy of this book because I am going through a journey similar to yours. I was recently diagnosed with celiac disease(positive blood test and positive biopsy) after years of misdiagnosis. My five-year-old daughter has had gastrointestinal problems for as long as we can remember, and she too had a positive blood test, negative biopsy. The pediactric gastroenterologist we saw (the only one in our city) did acknowledge that a negative biopsy did not mean she would never develop celiac, but he did not recommend a gluten-free diet until we had a positive biopsy, said IBS is probably causing her symptoms, told us to avoid fatty and spicy foods, and sent us on our way. Needless to say, this was not particularly helpful. We too made the difficult decision to put her on a gluten-free diet in February, are pursuing a second-opinion on her biopsy, and looking for further medical guidance. We can only make the best decisions we can at the time, with the information we have. However, I can without a doubt say I would give up every piece of gluten-filled bread, cake, pizza, etc. I have ever eaten to have avoided the years of suffering, thyroid problems, gallbladder surgery, osteoporosis at 32, and all of the other damage that has been done to my body.

  40. Erika says:

    my husband and i are both genetically gluten sensitive, and we're raising our little girl GF. we'll likely get her tested down the line.

  41. Heather says:

    This was a very interesting post and one that I will probably have to re-read a couple times to get the things that I missed the first time around. I have not had bloodtests done for either of my children but through the guidance of an awesome osteopathic and naturopathic pediatrician have guided my children away from gluten and dairy. I've noticed tremendous improvements in not only their appetites and bowel movements, but in their general behavior which is what led me on this journey to begin with. Although I understand your hesitation of subjecting your child to more tests or denying them that pice of birthday cake, I feel in my heart that you are doing the right thing. So often we underestimate the negative roll that common things in our lifestyle play on the development of children. And it's easy to second guess yourself. So go girl, it's great, it's hard, but the rewards are great. (atleast that is what I keep telling myself. lol) I would love to win this book, one..because I never win anything, and two it would be a great and fascinating read. :)

  42. Katie Ross says:

    I always want to learn more and would love to win a copy :)

    Thanks for sharing!

  43. Shanygne Gullickson says:

    I would love to have this book in my library! My daughter seems to have a sensitivity… she gets eczema quite often on the insides of her elbows and on the backs of her legs.. and often gets diarrhea and hence, a diaper rash… We try to keep her away from as much wheat as possible, but wonder what else we can be doing.

    Thanks for telling your sons stories…

  44. Amie says:

    Okay I tweeted this too and commented on it but I don't see that comment, so here it is again:
    http://twitter.com/migennes/status/14536847229

  45. Marg VP says:

    I'd really like to know more about the various "levels" of gluten sensitivity and intolerance. I've recently started to adjust my own diet to include more and more gluten free recipes and the results have been quite surprising! I'd love to win a copy of the book!

  46. Marg VP says:

    Hi! I happily posted a link to your blog on my Facebook page!

  47. I was sure I commented on this post before, Heidi, but I guess I just tweeted, sent you a message on Facebook, and commented on Facebook. ;-) Sometimes it's hard for a girl to keep up! I should have commented here first before doing all the others. LOL This is such a terrific post and I can see that you are getting a great response. Thanks so much for the mention. As you already know, I'm a huge fan of Ron Hoggan's! You've already seen how responsive he is and what sound info he offers. Dangerous Grains is a phenomenal book. Like Kim said, it was the first one I read after being diagnosed as gluten intolerant, per my doctor's instructions. It was an eye opener. I think everyone should own it. I did a celiac/gluten intolerance presentation today at work and I was passing it around then. If folks only take one look at it, they should look at the listing of the couple of hundred conditions related to gluten in the back. That will convince them to read the book. It's a quick read, too, despite offering so much medical data. Ron Hoggan is excellent at presenting info that's heavy duty, but still understandable. Best of luck to all those who have entered the giveaway! You are doing a very, very good and generous thing by sharing this book with five of your readers. :-)

    Shirley

  48. Shelly says:

    My son was just biopsy diagnosed 3 weeks ago at the age of 11…after a lifetime of off and on constipation and stomach pain. For years all I heard was "give him prune juice, give him Miralax" and my all-time favorite, "give him mineral oil until it's pouring out of him" from his pediatrician. But even as a breast-fed baby his bm's were few and far between and when he did finally go, it smelled as if it had been fermenting in his belly for weeks! I mean, he could really clear a room with that diaper. About 3 years ago we starting seeing a Chiropractor who is specially trained in Digestive Health treatments. She felt his liver was under great stress and put him on a liver support enzyme and a digestive enzyme. He is now on just the digestive enzyme before each meal and there was great improvement until recently when he had an episode where he was unable to make it to the bathroom. I was concerned with stretching in the rectum that was noted by a previous gastro about 4 yrs. ago so we went to a new gastro to get it checked out. I wanted a doctor who had no pre-conceived notions that my son was doing this to himself by withholding. The new gastro listened to his entire history and suggested a blood test. He came back borderline high for Celiac. I was floored! Nobody ever suggested that, most likely because he didn't have the classic symptoms. He was never "failure to thrive", always healthy, smart, social, focused (except for a period during 4th grade – I wonder??), perfect weight and height, never really sick aside from the chronic constipation and occasional migraines (again, I wonder?). Biopsy confirmed Celiac and the gastro thinks he's had it his entire life. I describe him as a "Life-long Low Level Celiac" but I'm interested in getting this book to see exactly how close I am to this description and if there is a more clinical term. Plus, I'm still confused on why the wheat allergy came back negative and how this auto-immune disease develops, and whether these migraines are connected. Thanks so much for a great blog! I'm learning so much.

  49. I find this information incredible. I do not have Celiac Disease, but eat gluten free. So many people come to me for advice. This book would definitely help me better understand this area. I am aware of the affect that corn, soy and gluten can have on a body – Inflammation!

    I just posted this giveaway on Facebook on 3 new pages: Gluten Free Give Aways, Gluten Free Giveaways, and Gluten Free Giveaway.

  50. Wendy says:

    Sorry to be chiming in so late here, but I JUST found your site!

    Wow…I took a look around and think it's amazing :) I'm totally AWESTRUCK by your creativity!!!!!

    This post was interesting to me….recently I read that same article you referred to at the beginning. It made alot of confusing sense to me :)

    My daughter began having celiac symptoms as soon as she started picking up Cheerios, around 7 months old.

    The random diarrhea was horrible and I can't even tell you how many times I expressed concern about it with the pediatrician. They just kept telling me that it was because she was still breastfeeding. (She nursed for 2 years) Never mind that the majority of her diet after 12 months consisted of solid foods….

    ANYWAY, 3 weeks after her 2nd birthday – on 7/25/05 – (and 4 – 5 weeks after weaning), she was dx with Type 1 Diabetes. I explained her ongoing GI symptoms, and they ran a celiac panel during her initial hospitalization.

    Negative.

    Because 10% of people with T1D will develop celiac, I learned that she would be tested annually as part of her normal diabetes care.

    A few months later (11/05) — still VERY symptomatic…

    Negative.

    A year later (11/06)….

    Negative.

    Another year later (11/07)…

    Negative.

    At one point I took her to see GI because her symptoms were SO HORRIBLE, and no one could help me find answers. Despite her incredibly symptomatic presentation, they refused to do an endoscopy because her labs were negative.

    The next year (11/08)…

    POSITIVE (age 5)

    Endoscopy followed with her official dx in 12/08

    Interestingly, because of the genetic component, I asked for a screening **for ME** with a routine physical a few months later. I did not have any symptoms.

    Allow me to repeat, I DID NOT HAVE ANY SYMPTOMS!!!!!

    My labs were positive, and I was officially dx via endoscopy in 9/09…biopsy revealed "near 100% villous atrophy"….NO SYMPTOMS!!!!!!

    Sorry to write a novel….all I really wanted to say is that I LOVE YOUR BLOG :)

    • Wendy,

      WOW! You and your daughter have been through the ringer! I am so sorry your little one had to suffer so long, that just kills my heart.

      I was like you, no GI symptoms whatsoever. It is so perplexing how celiac can exhibit so differently in people; why some get it so young and severe and why some go through half their life (or longer) not knowing there is a potentially deadly disease lurking around inside of them.

      How are you both doing now? Did you notice in yourself any changes after going gluten-free (assuming you did so… it took me 3 years to accept my diagnosis because I did not feel "sick").

      And just so you know, don't ever apologize for writing too much, there is no such thing in my book! It is important to tell our stories and they are always as long as they need to be. :-)

      ((Hugs))
      Heidi

  51. kjm says:

    I just found your website and I dont know how to interpret the test results.  Help my Dr. has no experience in this area and seems very put out that I asked for the testing since it runs in my family and we have all been on tagament and other prescribed antacids since our teens and early 20s in my family.

Trackbacks

  1. [...] including one by Ron Hoggan, Ed.D. (co-author of Dangerous Grains, the book I am doing a personal giveaway for tomorrow!).  Ron’s reply was the first time I truly began to understand the complexity [...]

  2. [...] Lastly, you may have noticed that I put up an AMAZON store in my right side bar.  When I began my blog, my intention was not to earn an income from it, and that has not changed.  I would however, like to raise money to donate to organizations that are making a difference in the gluten-free community.  Organizations like NFCA, CSA, GIG, The University of Maryland Center for Celiac Research, The University of Chicago Celiac Disease Center, Celiac Disease Center at Columbia University, as well as others.  Half of all the net proceeds that are earned from this blog will be donated to organizations such as those I listed.  I am still contemplating what to do with the rest, but some of it will be used for unsponsored giveaways, like the one I did for Dangerous Grains. [...]

  3. [...] diagnosis of my then five year old son (I wrote about Sam’s conflicting celiac test results here), and a little “professional help” before I finally decided to get real with myself.  [...]

  4. [...] disease (positive celiac blood panel but a negative intestinal biopsy, I shared some of this story here.  We also recently find out that Sam does have one copy of DQ8, one of the genes predisposing him [...]

  5. [...] you are interested, you can read more of my oldest son’s story about conflicting test results here.  I wrote about my youngest son’s non-celiac gluten sensitivity diagnosis [...]

  6. [...] son was diagnosed with celiac disease in 2008, at the age of 5 (you can read more of his story here).  It was in that moment that I decided to stand up, quit feeling sorry for myself and take back [...]

  7. [...] blood test, but his biopsy came back negative (I blogged about his conflicting celiac test results here).  As you can see from my lifelong struggles, making the choice to place him on a gluten free diet [...]

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