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Celiac Disease vs. Gluten Intolerance: Is One More Serious Than the Other?

I want to make one more post on the subject matter of Gluten Sensitivity before I get back to finding more fun recipes and ideas for our gluten-free kiddos.

Since my diagnosis of celiac disease 5 years ago, I have been very interested in learning about my gluten sensitivity story.  This interest catapulted into a mild obsession of sorts after my uncle passed away two years ago from Non-Hodgkin’s Lymphoma.  Knowing there is an increased risk for Non-Hodgkin’s Lymphoma in people with celiac disease, CD is genetic, and I am biopsy confirmed with celiac disease; it is a natural leap for me to suspect my uncle had undiagnosed CD.  Unfortunately, I will never know as my pleading for him to be tested was pushed aside as doctors were trying to save his life.  My uncle passed away 9 days after his diagnosis.

With the sudden popularity of the gluten-free diet, I have met many people who are trying the diet on for size without an official diagnosis of celiac disease, or non-celiac gluten sensitivity (the previous link is to an eye-opening article by Dr. Scot Lewey, a board-certified gastroenterologist).  I would say an overwhelming majority of the people I have spoken with, said they have noticed a significant improvement in their overall health on the GF diet, so they chalk it up to having a ‘gluten intolerance.’

Having gone down this road myself, even knowing I have celiac disease, I succumbed to testing the gluten waters after being on the gluten-free diet for many months.  When I did not have a gastrointestinal reaction (as in no stomach ache, no diarrhea, etc.), I allowed the seed of doubt to take over in my head and I dangerously stopped being as strict on the diet as I needed to be.  After many stops and starts on my GF diet, a series of events brought me to my knees and I became painfully aware of the consequences of such a foolish notion.

Now, whenever someone mentions that they are ‘gluten intolerant’ but do not have celiac disease, I ask them how strict they are with the GF diet.  Many times people say they do their best but because they do not have CD, they do not need to worry as much about cross-contamination, etc.

My question back is always this: How do you know?

A few days ago, someone with a similar concern made a post on the Celiac Listserv.  She received several responses, 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 and sheer magnitude of the Spectrum of Gluten Sensitivity, which includes two diseases that I have, celiac disease and dermatitis herpetiformis.  It also includes much more, all equally, if not more serious, gluten-induced disease and illness.  If you have not been officially diagnosed with CD and/or DH, but think you are ‘gluten intolerant,’ I highly encourage you to read the following from Dr. Ron Hoggan (bold emphasis added).

The phrase “gluten intolerant” is a rather nebulous term which is why I try to avoid using it.  I prefer to use ‘gluten sensitivity’.  The sub-groups of gluten sensitivity are: gluten sensitive enteropathy (otherwise known as celiac disease); non-celiac gluten sensitivity; neuropathic gluten sensitivity, etc.  Gluten sensitivity is the term recommended by the world renowned celiac researcher, Dr. Michael N. Marsh.  The terminology I advocate is congruent with Dr. Marsh’s assertions and it provides some clarity, as it often identifies specific sites of damage induced by gluten, distinguishes between some subgroups, and allows even the novice to accurately interpret some discussions of these topics.

The varying opinions on your biopsies may have been driven by just how familiar or unfamiliar these physicians were with the Marsh system for categorizing intestinal damage, which was developed by the same Dr. Michael Marsh mentioned above.  The Marsh system is gradually being adopted throughout most of the industrialized world, as older pathologists and gastroenterologists advance their understanding, and the younger ones usually learn about the Marsh system during their specialization training.  Of course, the terminology I recommend also makes it very clear that there are a number of types of gluten-induced damage to various body systems.

Dr. Rodney Ford, another world renowned celiac expert, has offered the term ‘gluten syndrome’ to incorporate the various groups of gluten sensitivities under one large umbrella.  I also subscribe to that choice of terminology. Careful word choices in this regard are, I think, critical to understanding the broader field of gluten sensitivity, and that celiac disease is just one sub-set of a rather large and growing continuum of illnesses that requires a life-long gluten free diet.  Celiac disease has long been considered the most serious of this spectrum and  other gluten sensitivities were considered “lesser” ailments.  However, Anderson et al recently published findings that suggest that non-celiac gluten sensitivity may more frequently lead to serious illness or death than celiac disease (1). If confirmed by further research, we may need to revise our opinions regarding where celiac disease falls on the gluten sensitive spectrum.

I hope my comments serve to clarify this issue.
Best Wishes,
Ron Hoggan, Ed. D.

Ron Hoggan, Ed. D.

co-author: Dangerous Grains ISBN: 978158333-129-3 www.dangerousgrains.com

author: The Iron Edge: a complete guide for meeting your iron needs ISBN: 978-0-9736284-4-9 http://tiny.cc/ironedge

author: Smarten Up! ISBN: 978-0-9736284-3-2 www.smartenup.info

editor: Journal of Gluten Sensitivity www.celiac.com

editor: Cereal Killers  in press

Source:

1. Anderson LA, McMillan SA, Watson RG, Monaghan P, Gavin
AT, Fox C, Murray LJ. Malignancy and mortality in a
population-based cohort of patients with coeliac disease or
“gluten sensitivity”. World J Gastroenterol. 2007 Jan
7;13(1):146-51.

As you can see, Ron sites his sources of peer-reviewed medical research, which carries an incredible amount of weight with me, as it should with physicians who understand the rigors of the peer-review process.  In the book Dangerous Grains, the list of sources is 28 pages long, so you can easily look up the abstracts for further reading and/or take copies to your physician.

I would love to hear your thoughts and personal stories on this subject.  I think it is extremely helpful for a lot of people, to read about the medical journey’s of others that might be in a similar boat.

Incoming search terms:

  • dr peter osborne quack (30)
  • dr peter osborne diverticulitis (5)
  • Casein Enteropathy (3)
  • dapsone for non-celiac gluten sensitivity (2)
  • diverticulitis Dr Peter Osborne (2)
  • neuropathic gluten (2)
  • professor michael n marsh (2)
  • jefferson adams celiac (2)
  • dr michael n marsh gluten (2)
  • how long does it take gluten to enter your system (1)

Comments

  1. Pat says:

    Thanks for bringing this to our attention! There is a lot to delve into here, so I guess I need to do my homework….

    • Pat:

      I think it is so important to continue educating ourselves on this subject matter. I always tell people that I want to own my disease. I want to know it intimately so I can appreciate the danger of non-compliance and it also helps me to appreciate the fact that I do have it. I know that sounds crazy, but there have been a multitude of blessings with my diagnosis. I actually feel lucky. ;-)

  2. Kim says:

    Excellent post! So important for everyone to understand. I loved the book – Dangerous Grains. It was one of the first books I read when I went gluten-free.

    Kim

    • Kim:

      I wish I had come across Dangerous Grains YEARS ago! That book alone has answered all the questions I have had in the back of my head. Such an enormous wealth of information that is easy to understand, even for a non-medical professional like me.

  3. Jen says:

    Great post! I know that I often let myself fall victim to that mentality since I don't technically have Celiac. But I DO have Crohn's and I really do believe that there's a gluten link. And I know 100% that I get sick when I eat gluten, it may not show up right away or the next day or the day after but eventually I WILL feel it.

    • Jen:

      Have you read Dangerous Grains? There is some compelling information about Crohn's disease in the book, and I urge you to read it. The more we know, the better we will be in the long run.

      If I could, I would ENTHUSIASTICALLY give up every piece of gluten I have ever had, to have good health today. :-)

  4. NoGluten says:

    Dr. Peter Green's book on Celiac has a checklist for who should be tested. There are no autoimmune diseases, etc in my family, so I am reasonably certain, but I do not know that I am "only" gluten intolerant. I am very careful though, because of the feedback just from mistakes. My spouse did need to be tested – every test and the biopsy – negative. But he is very, very careful, because of how trace amounts of gluten and casein make him feel.

    I think your post is very helpful for people who haven't quite got it all thought through yet. I've often wondered if those who try the Paleo/Primal diet (which is essentially no gluten, but not "gluten-free") have any idea what they are potentially getting into.

    • 'NoGluten':

      With so many inaccuracies in the testing process, at the end of the day, if you know gluten makes you feel bad, I think that says more than any test (gluten did not make me feel sick, and I have CD).

      As with the Paleo diet, I often think back to the South Beach and Atkins Diet phenomenon. I would bet money that many of the people who felt better initially, had undiagnosed gluten sensitivity.

  5. Kari says:

    We are dealing with this right now. Sigh. It's such a hard process. We have a 27 month old that has so many allergies/sensitivities. The problem is, these started showing up as soon as we had to move him to a bottle. We first discovered milk. That was simple enough to figure out. However, there was always something more and we couldn't pinpoint it. Doctors ignored us. When we would coincidentally have a diaper in their office, the horrible, horrible, horrible diapers, they would chalk it up to "toddler diarrhea". This was not normal. The horrible effects of the diarrhea was even worse. It was never ending. So I stopped the train and took us off.

    I started to research, research, research. I began to food journal and see if I could find a pattern in his very, very limited diet (he has other issues that precluded him from eating most solids) and his diarrhea. I started to question gluten. There just seemed to be a direct link to his consumption of gluten and his diapers. Finally my husband and I decided to make him totally GF since even our pediatric GI looked at us and scratched her heads after his confusing biopsies. Two doctors told us kids that young don't have gluten issues.

    Since taking him totally GF (and even after that final day of any gluten it took a bit for him to be totally clean), his diapers have ceased to exist as they did before. If he gets a contaminated piece of food, you can tell. It's horrible for him, just horrible. I still don't have a grasp on it all. We have, THANKFULLY, found a doctor that gets it, she really gets it, and we are doing some testing right now. She has an open mind that a 27 month old CAN have all these food issues (gluten, casein – not just milk we discovered, soy, nuts, corn, oils). She's working with us and is helping us in this journey.

    • Kari,

      It is a hard process, especially when your mother's intuition tells you something is wrong and doctors treat you like a hypochondriac. You are a rock star mom to have kept going, so many physicians are dangerously out of the loop on current medical research and that is why we have to be our own advocates.

      From a parental standpoint, I highly recommend that any parent going through this, asks for copies of all blood work that is run. Check to see which tests have been run for gluten sensitivity and which have not. Having more than just the Total IgA and tTG, can allow for further interpretation and ultimately a more accurate picture of what is going on.

      If a child's biopsy comes back "negative," ask the GI if the pathologist uses the MARSH classification system, ask if IEL's have been counted and ask if biopsies were taken in the duodenal bulb: http://www.biomedcentral.com/1471-230X/9/78

      I WISH my gluten sensitivity had been caught BEFORE I developed the other chronic conditions that I will have to deal with for the rest of my life. Especially now that I know I have had "atypical" gluten sensitivity for most of my life and doctors never thought to test me for it. I would gladly give up every piece of gluten I have ever had, to be healthy today.

      You are giving your son a true gift, not only with better health, but by growing up on these foods, this is what he will always know and love.

      I am so glad you have found a doctor that "gets it," it can make all the difference in the world. ;-)

  6. Excellent post! Keep up the great work.

    All the best,

    Dr. O

    • Thanks Dr. O!

      Also, thank you for the info on Luke's gene test. "Gluten Sensitivity," as a whole, is still fairly new to me, as I have only focused on CD and DH for the past 5 years.

      We are saving up to have all of our genes tested again, and I want to find the lab that offers the most complete testing. Your information will be helpful in making that decision. :-D

  7. Mari says:

    Thanks for a very thought provoking post; I have not been diagnosed because once I figured out that gluten was the problem I stopped eating it, and saw my symptoms all go away. I think it's been too long now for anything to show up on a test, since it's been nearly two years for me. One thing that frustrates me is that I keep telling my kids to get tested, and they all blow me off. They are really good about stocking their homes with my favorite products when I come to visit, but they themselves won't get tested because I think they're afraid they will have to go gluten free. It's driving me slightly crazy!

    • Mari,

      I know how you feel, my parents and sisters are the same way. The thing is, not knowing doesn't make it any less true, if you have it. I know for me at least, my not knowing for many years and then my foolish denial phase after diagnosis, came with a heavy price to pay. It can be hard to make the commitment in the beginning, especially if you do not "feel sick," BUT once you begin to see the consequences show up in other diseases that cannot be healed by FOOD, you really just want to kick yourself. It's true what they say, you think it will never happen to you, until it does.

      So many people don't want to go gluten-free because they think it is too restrictive. Personally, I think restrictive is being in a box, 6-feet under. ;-)

  8. Hi. This is great information I will look for that book. I was just diagnosed with a gluten sensitivity. The naturopathic doctor explained it to me as a spectrum as well. It has only been a week but I plan to be very strict in avoiding gluten. I want to feel good!!

    I found you through #gf on Twitter.

  9. Another phenomenal post, Heidi! I am such a huge fan of both Dr. Hoggan and Dr. Ford. Their work is making such a difference. I prefer the term gluten syndrome or gluten spectrum, just because gluten sensitivity makes many think that it's not as serious a condition as celiac and a little bit of gluten ingested is okay. Many will state that on online forums, social media, etc. "I am only gluten sensitive, so I can eat gluten from time to time." Not so, and as you said, they may really have celiac and continue doing damage. It's such a Catch 22 though because the very reason my doctor didn't have me do traditional celiac testing is because the testing has so many false negatives and doesn't catch all those with gluten issues. (And, some won't get a diagnosis, because insurance rates can go up and even has been canceled for some.) The syndrome is much more than celiac. Dr. Lewey is doing a lot in this area as you mentioned. Also, Dr. Stefano Guandalini, of the University of Chicago Celiac Center, has shared in publications like Living Without, that there are visible changes in the small intestine for people who are gluten sensitive, but not celiac. They are in early testing of this, but it's real. I'll have to find the reference and get back to you.

    Finally, Kari's story breaks my heart. Is there any wonder that 97% of those with celiac are undiagnosed (and many more with other gluten issues), because of such doctors' ignorance? Children can have and be diagnosed with celiac at very early ages. Without diagnosis and continuing to eat gluten, some have even died. Their stories are tragic and so unnecessary. Kudos to Kari for trusting her instincts and finding a reasonable doctor. The first one should be charged with malpractice.

    Thanks again, Heidi! There can not be enough of these discussions. People are suffering out there.

    Shirley

    • Shirley,

      You make an excellent point, I can definitely see how the word 'sensitivity' can downplay the severity and seriousness of the problem. Being 'sensitive' to something does not really scream out "TOXIC."

      It does not take much gluten to do damage, and it goes much further than simply "feeling bad," after exposure. I do not get physically ill when I am exposed to gluten, but that does not mean my immune system is not reacting nonetheless!

      My last blood test showed a tTG level of 37 (under 19 is normal for my lab), and this was during my "gluten-phobia" phase, when I did not eat out or at other people's homes. It tells me that something I was buying at the time contained hidden gluten, had been been cross-contaminated or maybe I am sensitive to oats. It could also have been in my shampoo, etc., but my GI doctor told me not to worry about gluten in my shampoos/conditioners since I don't "eat them."

      I don't know about you, but shampoo can easily get in my mouth! I would also think that if you wash your hair with your hands, the hydrolyzed wheat proteins that are commonly found in hair care products, could stick on your hands. How many people get out of the shower, then go wash their hands??

      There were two things in particular that really jumped out at me in Dangerous Grains:

      1) The fact that if you put gliadin in a petri-dish with normal human tissue, it will destroy the tissue.

      2) How a leaky gut, a.k.a. increased intestinal permeability, can allow the gluten proteins to enter the blood stream. Once in the blood stream, those gluten proteins have access to your internal organs.

      How many different conditions and medical treatments can lead to a leaky gut, which can allow the gluten proteins to enter the blood stream and have access to one's vital organs, with or without the presence of celiac disease?

      I can only speak from my own personal experience, but it all makes perfect sense to me, especially considering my own symptoms and conditions, including DH. According to the GIG group, <a href="http://www.google.com/url?sa=t&source=web&ct=res&cd=1&ved=0CBIQFjAA&url=http%3A%2F%2 Fwww.gluten.net%2Fdownloads%2Fprint%2FDHflat.pdf&ei=W1QBTLuxFpT8NeLqoTs&usg=AFQjCNHqbsR7VsSI4ziAxGGuXbBG-g-ikQ&sig2=bpZZaVep8HDR1Y7kXCxy7g” target=”_blank”>http://www.google.com/url?sa=t&source=web&ct=res&amp;…” target=”_blank”>Fwww.gluten.net%2Fdownloads%2Fprint%2FDHflat.pdf&ei=W1QBTLuxFpT8NeLqoTs&usg=AFQjCNHqbsR7VsSI4ziAxGGuXbBG-g-ikQ&sig2=bpZZaVep8HDR1Y7kXCxy7g

      "If you have DH and do not follow a gluten-free diet, you **MAY** develop the intestinal damage of celiac disease. With DH, the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy than for those with only celiac disease."

      Note the part about "MAY develop the intestinal damage of celiac disease."

      I don't know when my villous atrophy occurred, but I do know my body has been reacting "atypically" to gluten for most of my life, mostly with skin and behavioral issues like ADD and depression.

      Now I am sick and dealing with chronic health conditions for the rest of my life, and I am only 36. My villous atrophy can heal, but my other problems are here to stay, forever.

      What really saddens me is when the people who educate on non-celiac gluten sensitivity are questioned on their motive and/or the validity of what they are saying. That the people who are in the business of preventative and alternative medicine are still deemed by many as "quacks." That society as a whole needs a directive from an M.D. before they make any type of lifestyle change.

      I just recently realized within the past few weeks that Sam's and my last celiac blood panel tests were missing two components that could show the presence of anti-gliadin antibodies in the blood.

      Then, even with Sam's positive tTG, his biopsy came back "negative," which could have been a result of something as unacceptable as doctor/pathologist MISCOMMUNICATION!

      With circumstances such as these happening to our family alone, it is no wonder that 97% of people with celiac disease are still undiagnosed. That doesn't even include those with non-celiac gluten sensitivity.

      Validation/confirmation from an M.D. often comes too late (like it did for me and quite possibly my uncle, who is no longer with us). And you know what? It won't affect the doctor one bit, but it will affect the patient and the quality of their life forever (although the Dr. will get to see you more often to treat your other conditions!).

      I also think it is horrible that doctors often recommend that one NOT go on the gluten-free diet UNTIL there is a biopsy confirmation of celiac disease, even if blood tests show the presence of antibodies. That it is recommended one wait until there is enough significant damage to the small intestine (thus opening the patient up to many more chronic diseases) BEFORE taking any action.

      It makes my skin crawl when I hear some doctors and nutritionists say that the gluten-free diet is restrictive and unhealthy. What kills me is the reason that is often cited for it: that most GF foods are not fortified with added nutrients!

      The reason most gluten containing foods are fortified to begin with are because they are highly processed and stripped of their original nutrients!

      A lot of what I read leads me to believe that a naturally gluten-free diet that consists of fruits, vegetables and lean proteins will give you all the nutrients your body needs. If you are still battling a deficiency, vitamins are a good way to go.

      Overall, I think the gluten-free lifestyle is much healthier than the mainstream American diet and all one has to do is take a good look around at a lot of the people who still eat it. ;-)

      And as far as restrictive goes, being chronically sick or dead is my definition of restrictive; everything else is manageable.

  10. Sister–You are preaching to the choir … I could not agree with you more!! Some responses not necessarily in order … I wish that Petri dish info would get major visibility! Ron Hoggan, Ed.D. has quoted that fact many times. How eye opening is that? (Side note: Did you know that LSD is made from a fungus that grows on grains? Does that explain the neurological components of gluten issues?)

    Of course, leaky gut is well documented, but I've still heard doctors myself say they don't believe it!

    I've argued the fortification issue with folks many times. You only need to fortify what has been stripped to begin with, as you said. We can live gluten free without refined gluten-free products. If you're eating fortified, you're eating processed. And fortified is NOT the same as if the product contained the vitamins/minerals to begin with, by nature.

    It's very true that eating real food that's naturally gluten free can provided all one's needs. It also true that many folks have to continue supplementation. I just read an article in Living Without (older issue) that said many folks who were iron deficient at the time of diagnosis still needed iron supplementation 10 years later. Is that because they were eating largely refined gluten-free foods? There's no way of knowing. I am continuing with supplementation. Dr. Peter Green has stated that he doesn't believe that any adults fully heal, which would explain the continued need for supplementation. Of course, perhaps it's also related to most of us not eating a diet that is solely whole food and super nutritious.

    Yes, the "too difficult," "too restrictive" rhetoric makes my skin crawl, too. Even worse are the article that come out and say that a gluten-free diet can be harmful to you. I just read one this past week. And, attendees at my presentations often ask me about that topic. It's hard to fight all the misinformation that's out and about, particularly when it often comes from medical professionals.

    I want to respond more (I know good grief, isn't my reply long enough already, right?), but I've got to run out to a family gathering. Will talk to you more later.

    Keep up the great info and discussions, dear! I see more of yoru discussion posts coming, and I welcome them wholeheartedly! :-)

    Hugs,

    Shirley

  11. Heidi–I wanted to come back to add one point. A diagnosis of dermatitis herpetiformis IS a diagnosis of celiac disease, whether one has or develops intestinal damage typical for celiac disease. Some folks have referred to DH as the skin form of celiac. Here's a quote straight out of Dr. Peter Green's book, Celiac Disease, A Hidden Epidemic (and it's bolded in his book as well): "If you have a positive diagnosis of dermatitis herpetiformis, you have celiac disease. And you must adhere to a gluten-free diet no matter how "normal" your intestine may appear."

    However, just as in the case of traditional celiac cases (with intestinal damage), the misinformation continues about DH. First, I have personally heard a head of dermatology at a medical school speak to the large GIG group I belong to and say that DH patients are more likely to be gluten sensitive … NOT that DH is celiac. My friend, who suffers from DH, and I about jumped out of our chairs. Second, biopsies are done incorrectly for DH every day. An incorrect biopsy mean a lack of a diagnosis for DH, AND, of course, celiac. I know this because my son also suffers from DH if he eats gluten and his biopsy was done incorrectly. The biopsy should NOT be done of the lesion itself, but of "uninvolved skin adjacent to an eruption–best taken within millimeters of a lesion. The biopsy must be done by a knowledgeable dermatologist because a sampling of tissue from the eruption itself can be confused with other skin conditions. A biopsy of the actual lesion will give a characteristic appearance, but it is not possible to do the immunological staining that is necessary to make the diagnosis. This is because the inflammatory reaction in the blistering lesion destroys the early signs of the immune deposits that are still present in adjacent tissue. The biopsy is tested for granular IgA (immunoglobin A) deposits under the top layer of unaffected skin using direct immunofluorescence." That info is also courtesy of Dr. Green's book, and he adds that because "no tests in medicine are 100% accurate, not everyone with DH will have a positive skin biopsy. He states: "A negative biopsy should not necessarily be used to exclude the diagnosis if the lesions look and act like DH and occur after ingestion of gluten." He writes a lot more on the topic and I recommend that anyone with a skin condition that could be DH read his writing on this topic. Sadly, I didn't know that the unaffected, neighboring skin should be biopsied when my son had his biopsy. The biopsy was not done by an experienced dermatologist either. It was done by her physician's assistant. Frankly, he was clueless. He came up with one possible diagnosis after another and kept prescribing cream after cream. None of them worked. It was only after my son quit eating gluten (albeit briefly that first time) that the lesions disappeared. I should note that he also had traditional celiac testing at age 19, which was 3 years later. He was eating gluten at the time and was experiencing major GI issues. I had to walk the GI doctor through the proper testing, but my son's testing was still negative. Interestingly enough, he discovered that my son had diverticulitis (the precursor to diverticulosis). Who has that at age 19? The doctor noted that it was highly unusual. Well, someone who has a gluten issue I'd say. It's a long story like most of these stories are, but at age 20, my son decided, on his own, to stop eating gluten permanently. That was a hallelujah day for me, let me tell you! And, he's been a different person–in the best possible way–ever since. :-)

    All for now … hope you are having a lovely Memorial Day weekend with remembrance and family time!

    Shirley

    • Shirley,

      Thank you so much for sharing this information! I am so happy your son finally decided to try the GF diet and found relief (and convinced himself in the process that he has gluten sensitivity). That must bring so much peace to your heart, especially knowing what this disease can ultimately do to a person.

      I still plan on doing a post on my DH journey, but it has been slower going as I try to put the pieces together. I obtained copies of my medical records from my childhood dermatologist and shipped them to Dr. Hoggan so I could get his opinion. I have suffered from a plethora of skin conditions my entire life and have been diagnosed with many things, but never DH until my final outbreak that was of "Biblical" proportions in 2008 (I'm not joking either). Up until then, my lesions were very minor, occurred seasonally and were only on my knees (Doctors passed it off as a grass allergy and even a sensitivity to humidity with no further testing). The blisters never stuck around very long because I would scratch at them, so I looked like I just fell off my bike a lot.

      When I finally convinced my current dermatologist to biopsy for DH, I remember her being skeptical because "DH is rare." She took two biopsies, one of the lesion and one from the surrounding unaffected skin. This was a fast diagnosis because she went to another room and did the test herself. When she came back with a positive diagnosis, she immediately wrote out a prescription for Dapsone then proceeded to tell me that I would need weekly liver checks while on the medicine. That scared me so I declined the medicine (plus, I felt like I needed to suffer through it to finally get my diagnosis through my thick head and comply with the diet).

      When she didn't say anything about the gluten-free diet, I asked her if she knew DH was an autoimmune condition related to Celiac Disease and a gluten-free diet for life would be necessary. Know what she said? "I've heard that the gluten-free diet can be helpful for some people with DH, but Dapsone is more effective."

      When I got home, I Googled Dapsone and about fell off my chair when I read that it is the same drug used to treat LEPROSY! That was rather ironic too, because when the outbreak was at it's peak, I remember telling my husband that I felt like a leper, because it was so horribly painful and embarrassing (it does make me wonder how many of the lepers in the Bible could have actually had DH instead of true leprosy, LOL! :-D ).

      Dapsone is a dangerous drug and it is upsetting to say the least that this drug was going to be my only prescribed course of treatment, had I not had previous knowledge of what DH is. What is especially scary, is the fact that there are some very serious liver conditions that someone with celiac disease could also have/potentially get (I might be one of them, but am still in the testing process to know for sure). Autoimmune hepatitis and Autoimmune cirrhosis are just 2 of the potential liver diseases that are associated with celiac disease:

      From PubMed on Autoimmune Hepatitis: http://www.ncbi.nlm.nih.gov/pubmed/15645466 (click the link for the full abstract)
      The results of this study showed a high prevalence of CD in patients with AIH. For this reason, early serological screening testing for CD is strongly recommended for all AIH patients.

      From Wikipedia on Primary Bilary Cirrhosis: http://en.wikipedia.org/wiki/Primary_biliary_cirr
      57% of patients with acute liver failure have anti-transglutaminase antibodies[5] suggesting a role of gluten sensitivity in primary biliary cirrhosis, and primary biliary cirrhosis is considerably more common in gluten sensitive enteropathy than the normal population.

      Here is the link to a great article by Jefferson Adams on Celiac Disease and Liver Disorders (Celiac.Com): http://www.celiac.com/articles/21501/1/Celiac-Dis

      My point being, is that if Dermatologists are automatically prescribing Dapsone for DH and do not even KNOW enough about DH to tell the patient what it is and how it can be controlled by a diet change; how many patients are taking this dangerous drug that requires WEEKLY liver checks, thus potentially causing even greater harm to a vital organ that is already at risk for serious complications from undiagnosed/untreated celiac disease?

  12. Maggie says:

    Heidi I have just started reading Dangerous Grains and it's totally blowing me away. And I'm only 20 pages into it. Thanks for sharing it with me and all of your readers. I have discovered, on our journey, that Medical doctors are not the answer for most health problems. I do really respect them, however I do not appreciate how they treat the symptom and ignore what is causing the problem. Where did the wheels fall off? My Naturopath uses this analogy, "It's like when a light goes off on your dashboard telling you to change the oil. Some people just take the lightbulb out or put take over the blinking light that is bothering them. Unfortunately this doesn't solve the problem."

    I am so thankful that this journey has lead us to Natural Health. We are so much better for it. Now I am empowered. I am not going to fear anymore. I am going to use this information for good. To help my family, to help my friends, and to help my blog readers.

    Thanks for bringing this topic to the forefront. I feel so strongly about it. The stories above, shared by your readers, make me realize how important our blogs are. xo

    • Maggie,

      I am so glad you like the book!

      I agree with you about not fearing anymore. My doctor told me once (when I was afraid to go through another round of blood tests… I REALLY embraced the whole "ignorance is bliss" frame of mind, at one point in time!):

      "You cannot slay the dragon if you do not go after it."

      That really resonated with me. If I don't know that something is broken, then how can I fix it, while there is still time?

  13. Heidi–Yes, great point on the Dapsone potentially causing liver issues that one with celiac (or non-celiac gluten issues) could already be predisposed to. I've actually shared that Jefferson Adams article several times myself … with others with liver issues that I suspected were related to gluten. Organ issues of all kinds can be tied to celiac/gluten intolerance. One former local celiac expert I heard speak stated that appendicitis is often the first sign of celiac. I had never heard that before, and I don't recall hearing or seeing it since. I'll be interested in hearing your complete DH/skin issues story one day. It is very sad what that dermatologist told you. She should have immediately recognized that she had just given you a diagnosis of celiac as well as DH and that a gf diet was essential for both.

    And, yes, it was a great relief when my son went gf. Now he educates others on the topic and tells folks about my blog. ;-)

    Okay, just back from time at our mtn property and lots to catch up on. ;-)

    Hugs and kudos for spreading the word!

    Shirley

  14. Deanna says:

    Wow – interesting. Someone asked me just the other day, "is there an amount of gluten you can tolerate?" That's one of the downfalls of not having celiac, but having gluten sensitivity. I'm pretty strict, and never knowingly eat any gluten.

    • Deanna,

      It does give one some major food for thought, huh? I presume the reason being is that for someone without celiac disease, many physicians will not recommend a gluten free diet. My own Gastroenterologist does not believe in non-celiac gluten sensitivity, which is so scary. If someone is producing antibodies to gluten, but does not have the obvious villous atrophy (yet) to diagnose CD, it is pretty clear, to me at least, that someone is having a reaction to gluten that has crossed the intestinal wall. Once the gluten protein enters the blood stream, it has access to one's major organs and can cause an incredible amount of destruction, with or without celiac disease. What I continue to think about is the example given in Dangerous Grains, where gliadin was placed in a petridish with normal human tissue and the gliadin destroyed it.

      I have CD and DH, as well as many other chronic conditions that are a result of being undiagnosed and untreated for probably 25 years, if not longer. My personal recommendation (I am not a doctor) to anyone who is diagnosed with gluten sensitivity or is self-diagnosed (where removing gluten from the diet has shown obvious improvement) that they treat their condition as strictly as someone with celiac disease and they adhere to a strict GF diet for life. It is a big commitment but in the end, it is the only way to protect yourself from what is still not well known about non-celiac gluten sensitivity.

  15. Shawn says:

    I’ve been writing about bowel problems caused by grains and ended up here. An excellent post.

    Hey GF-Mom,

    I wanted to add some info to this excellent post.

    A 2006 study showed that gliadin which is a component of gluten, acts on a chemical called zonulin. Zonulin decides how big the pathways in the intestinal wall are.

    If these pathways get too big, then larger molecules or partially digested food can pass through into the blood stream. It's theorized that this can cause immune responses that lead to food sensitivities, IBS, fibromyalgia, and all kinds of issues.

    Great site design BTW

  16. Shawn says:

    Oops I mistyped. Sorry.

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