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Celiac Crisis: Rare or Rarely Recognized?

After sharing my personal story of living with undiagnosed celiac disease last spring, my father brought a series of frightening events that occurred just over a decade ago to my attention and asked why I didn’t mention them in my post.  The plain and simple truth was, I didn’t (and still don’t) know if the 4 ambulance trips I made to the emergency room in the late 1990’s had anything to do with my (then) yet undiagnosed celiac disease, but I’ve often wondered if there was a connection.  After thinking about it for a while, I turned to one of the experts I trust most, Dr. Rodney Ford and asked him if he had ever heard of any similar experiences and he promptly told me to research ‘Celiac Crisis.’

I decided to share the following story because one, I’d love to know if anyone else has experienced anything similar and two, to hopefully bring some awareness to this little known and potentially fatal condition.

Celiac Crisis

Celiac crisis is a rare, poorly understood, but potentially deadly condition in which patients with celiac disease suffer from severe diarrhea and other serious metabolic changes.

Celiac Crisis is specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or supplemental nutrition (click here to read the full article on celiac.com).

If you’re eating right now, I’d recommend reading this post later. :-D

As I’ve mentioned several times in the past, I fall somewhere in-between the definition of an “Atypical” and “Silent” celiac, meaning I do not suffer from the “classic” gastrointestinal symptoms (diarrhea, bloating, cramping, malabsorption, etc.).  My symptoms were largely skin related (dermatitis herpetiformis and psoriasis), as well as neurological (depression and ADHD).  In my 38 years, I’ve never suffered from chronic GI issues, but there was a span of about 3 years (in the late 1990’s) in which I had a few curious events that landed me in the emergency room, my body in shock after I became severely dehydrated after a sudden and acute bought of diarrhea (we’re not talking loose stools here, it was as if I were urinating from the wrong side).

The first time it happened, I was at work (thankfully, I worked in a hotel and had a vacant room to retreat to).  I had gone in that afternoon feeling totally fine but a few hours later, I began to feel like I was starting to come down with something.  Within minutes, I could barely stand and my skin had become clammy – cool, sweaty and very pale.  A fellow co-worker had to carry me to a nearby guest room where I spent the next hour or so on (or nearby) the toilet before I eventually passed out.  Luckily, someone had come to check on me and promptly called an ambulance when they discovered me lying unconscious on the bathroom floor.

The next thing I knew, I was at the hospital hooked up to an IV and under a mound of warm blankets but I was still so cold that I asked for a few more.  How the words managed to escape the dry, barren desert that had become my mouth, I will never know.  After the nurse had hooked up my 8th bag of saline solution and my faculties began to return, I asked what the heck happened.  She said I was brought in to the ER in pretty bad shape, that my blood pressure was so low, it didn’t even register on the machine.  They couldn’t even locate my pulse.  My body had gone into shock and they weren’t sure why, but suspected I’d come down with what they were calling the Asian Bird Flu at the time (this was 1997 and there had been an outbreak of the H5N1 virus after people were infected from a poultry outbreak in China).

Several months later, it happened again and in much the same fashion.  I felt fine one moment then within minutes, the clammy skin and piercing pain in my abdomen began to rear its ugly head before I went unconscious a short time later (after the accompanying bathroom trouble).  Once again, my blood pressure dropped so low the ER staff had a difficult time obtaining it.  This time though, the doctor said I must have eaten something that resulted in a food borne illness.

The 4th and final episode happened in 1999, and this was the most frightening one of all.  By this time, I had moved to New Mexico (from Ohio) and I lived in an apartment about 30 minutes from my parents (and my new boyfriend Mike).  I was completely alone when “the drill” began.  The symptoms were so familiar by this point, I knew what was getting ready to happen so I picked up the phone and called my dad.  A decision that would ultimately save my life.

By the time my father arrived at my apartment, I was semi-conscious.  Barely aware enough to hear the panic in his voice as he scrambled to call 911.  I vaguely remember laying there when a sudden sense of peace overcame me.  If I were going to die, I wanted to go in the comfort and safety of my father’s arms (can you tell I’m a bonafide daddy’s girl?). :-D

Blackness.

I obviously don’t recall what happened next and for whatever reason, I never asked my dad about the details until yesterday, over a decade later. After a brief moment of silence, he told me that by the time the ambulance had arrived to my apartment, I was already unresponsive.  I had been in the ER for maybe 3 minutes when a call was made and a team of at least 10 emergency room staff ascended upon me and pushed my gurney “somewhere else.” After all the hullabaloo had subsided, the doctor told my dad that once again, I was severely dehydrated and in shock.  My blood pressure was so low this time that they actually thought I wouldn’t make it.

Wanna know what they thought caused it this time?

Broccoli.

Never once did they suspect that it could have been the pasta my broccoli was sitting in.

But oddly enough, once I quit eating broccoli, it never happened again, so I don’t know if those 4 events had anything to do with my underlying celiac disease or not.  I will say this though, I had enough suspicion that it wasn’t the broccoli that I got brave one weekend last year and took a bite (I made sure Mike was home with me).

Nothing happened (other than some mild discomfort from not having had any cruciferous vegetables in over a decade) and I’ve been eating broccoli on a regular basis ever since and no more life threatening trips to the ER.

Could it have been celiac/gluten related?  I have a sneaking suspicion that yes, it could have been but back then (heck, even a month ago), I thought they were completely isolated events that occurred as the result of a virus, a food borne illness…or broccoli.  I continued eating gluten for another 9 years after the final “incident” but I never ended up back in the Emergency Room.  The more I think about it though, my celiac has never made logical sense to me.  My dermatitis herpetiformis was never chronic or severe, it came and went over the years (it was usually seasonal).  My psoriasis lasted all of one year before I went into spontaneous remission over 2 decades ago.  I had two healthy children, getting pregnant with each on the first try (I did have some complications with Sam though…probably from eating my body weight in Weinerschnitzels!).

Celiac Crisis in Adults: Rare or Just Rarely Recognized GastroenterologyVolume 138, Issue 5, Supplement 1, Pages S-305, May 2010

Celiac crisis is a life-threatening syndrome where celiac disease presents with profuse diarrhea and severe metabolic disturbances. Celiac crisis in adults is believed to be uncommon and is not well documented.  However, it is likely that many patients with celiac crisis are not definitively diagnosed.

Have you ever had anything like this happen to you or someone you know?  If so, was it ever connected to celiac disease?

 

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Comments

  1. Oh, Heidi, I feel for you and your family (dear dad coming to the rescue and fearing for his daughter's life for sure)! I feel fairly certain these incidences were related to celiac. There are people who eat gluten and lose consciousness and even go into comas–llike the fellow who was delivered a gluten-full pizza instead of a gluten-free one … and my previoius doctor's son's girlfriend who was celiac, but cheated and ate a hamburger at a fast food place. Not urban myths.

    Why do we react differently at different times? I don't know. Is it different forms of gluten? Different forms of gluten? (Sometimes I immediately vomit, most of the time not. Is that a barley reaction vs wheat? I wonder.) Something in conjunction with gluten? The varying states of one's health before the gluten is ingested? A major hit of gluten (pasta) vs a minor hit (meat loaf with a few bread crumbs)? Again, I don't know, but I've had similar experiences and varying experiences enough times to believe that they are all caused by gluten. Sometimes I realize that in hindsight though. I remember being in the ER as a teenager with terrible side pain. It lasted about 24 hours and then went away. I remember the ER doctor telling my mom that I kept "changing my story" on where the pain was located, meaning that he was looking for it to be on one side or the other to rule out or rule in appendicitis. (BTW, as I was telling another gf blogger friend the other day, our GIG group's former medical sponsor, head of gastroenterology at local university hospital, said appendicitis was often the first sign of celiac. But I haven't found that info elsewhere.)

    When I had Son, my body revolted on me and I had the instant liquid diarrhea (I'm more blunt than you!) for days. You can imagine how that was when taking care of a newborn. I went to a GI doctor who was unsympathetic and unhelpful. He gave me nothing to help me out, but sent me home with the specimen containers so that they could check for cancer. I never went back. I called the gastroenterologist who had treated me for gall stones and then removed my gall bladder in conjunction with a surgeon (gall bladder issues are another sign of gluten issues) and he called in a prescription for me to slow down the colon. It worked well enough that I slowly recovered/returned to my normal state, which still meant alternating diarrhea/constipation for me. But to be clear, I've had that instant liquid diarrhea A LOT in my life. I know well those sweaty, clammy, etc. symptoms you describe. They are often a harbinger of what it is to come for me, and I fight them with breathing, counting in my head for pain, etc. to pass, and trying to expose myself to fresh, cooling air if I'm well enough to do so, but often I am not and usually my actions can't stop the progression of my body's reaction. These experiences I'm sharing are definitely different than yours, so please don't think I'm trying to compare them to how serious yours were. But we all react differently and I did want to share some similarities. I suspect that many will remember times that were similar to yours and realize that they may have been gluten reactions. One other comment … like you I had a "healthy" baby, but the truth is my son was compromised the moment he entered the world, which showed from his issues with projectile vomiting, curtain-spattering BMs (yes), etc. Nobody made out like it was any big deal. Let's just put him on a special formula, which did help, but what indicators I had, but just didn't know. Anyway, didn't mean to veer so far off course, but so many signs are there for us, so many abnormal health responses. Thanks so much for sharing, Heidi. I know it was hard to relive those moments. But this post will help some put the pieces together I suspect.

    xo,

    Shriley

    • Thank you SO MUCH for sharing your story Shirley and bless your heart for having to endure the sweaty, clammy, (etc.) symptoms repeatedly throughout your life. There are few feelings that I dread more than those, not just because of what they lead to for me, but the pain and pure fear over the loss of control of your body…gives me the willies just thinking about it.

      I told Ron Hoggan about my experience last summer and he said something very similar to what you said, about the condition of one's health before the ingestion of gluten. He used the term "gliadin shock." I Googled it but never found much information so I just dropped it until my dad brought it up again and Dr. Ford used the term "celiac crisis" (but still, there isn't a lot of documentation on it). I'm really curious now, so I'm going to see if I can locate the hospital records so I can read the notes and see what types of tests were run (if any).

      It brings to mind a time when I had mowed my lawn one morning before going to get my allergy shot (I'm severely allergy to grass). I was hanging out in the lobby of my allergist's office for the required allotment time following my shot and the nurse noticed that I had begun to cough and scratch my throat. Immediately, she called me to the back for a shot of epinephrine, apparently I OD'ed on grass from having mowed then received more of it in an injection.

      And you bring up an EXCELLENT point about the different forms of gluten (remember when I emailed you our Cyrex Labs Array #3 results?).

      And yes, hindsight is an amazing thing. I remember my gastroenterologist telling me that my pregnancy with Sam was probably what triggered my celiac (and hence the reason why I didn't experience the classic, chronic GI issues…because my intestines weren't yet fully damaged (celiac is progressive and patchy he said, so I probably only had very limited damage at the time). Made sense and I stupidly told myself that "I still had time to cheat" before having to completely eliminate gluten from my diet (gosh, I was so dangerously naive back then). My mouth literally dropped to the floor a few years later when I discovered that I had in fact been reacting to gluten for most of my life (that connection was made when I was officially diagnosed with dermatitis herpetiformis because I know that began showing up when I was about 14). Was it celiac back then (as defined by villous atrophy), or was the gluten damage limited to just my skin at the time and thus, would I have "technically" fallen within the definition of non-celiac gluten sensitivity? (I know, crazy things I think about).

      Another excellent point that I'm glad you brought up is your son. Like your son, Sam began having problems the moment he arrived: colic, projectile vomiting and dark circles under his eyes (and Luke was MUCH worse off than Sam). With both boys, their doctor told me to stop giving them breast milk and put them on soy formula, and so I did what he told me to do because I didn't know any better. That was a very bad decision I later came to discover because soy protein, in addition to gluten and dairy proteins (and the list also includes chicken, fish, rice and countless other conditions, like parasitic infections, which Dr. Vikki discovered both of my boys had last February: Sam had pinworm and Luke had hookworm), can cause villous atrophy of the small intestine. Here's just one of several papers documenting soy protein villous atrophy: http://www.ncbi.nlm.nih.gov/pubmed/987760.

      I am so glad you brought up appendicitis and gallbladder issues as possible co-morbid conditions, you reminded me of a time when I was, gosh, probably 10 or 11 years old and I had acute, stabbing pains in my lower right abdomen one night. I remember my dad asking my mom if he should take me to the hospital in case it was appendicitis. I FREAKED out because a kid in my class had just had his removed and it scared the dickens out of me. I think my dad even tried to pick me and force me in the car but I wouldn't budge so he eventually dropped it (and the pain finally went away). I also had some extremely painful upper abdominal pains when I was pregnant with Luke and my GI did an ultrasound, looking for signs of gallbladder trouble (but he didn't find anything).

      The damage from gluten is systemic and no part of the body is safe from its' caustic bite, whether a person has celiac disease or NCGS.

      xoxo,

      Heidi

      • rebecca says:

        That is interesting the relation to appendicitis and gallbladder. My gastroenterologist likely thinks I’m nuts because I’ve convinced him or other doctors to to do ultra sounds and abdominal x rays at least 3 times because of such severe abdominal pains. Nothing ever showed up. I’ve been diagnosed with ulcerative colitis for 12 yrs, and when I’ve asked to have celiac tests my family doctor says that it is probably just the colitis, but I’m starting to wonder if there is at least a gluten sensitivity. I’ve definitely dealt with the clammy skin, blood pressure drop, diarrhea, vomiting, dehydration thing to many times in the past couple years especially. I bought life insurance this past spring after an especially scary bout. Food can feel like Russian roulette, even when I’m doing well like now, because you never know what could set off a rapid health decline. I worry about my two kids as well and all their health issues that may be related. Gluten free seems like a momentous under taking but it might be worth a shot. Just wondering but have people found that their reactions to gluten become even more severe once they are off it?

  2. Melodie says:

    When I was first taken off gluten I did not always prepare ahead. I was in an airport and thought I was being careful but obviously was not careful enough. I ate an airport snack and then boarded a short hopper flight. About 30 minutes into the flight I had the same symptoms you described above – diarrhea, cold clammy skin, rapid blood pressure drop, and starting losing consciousness. Before I passed out I had enough about me to call the flight attendant. The pilot made an emergency landing and the plane was met with an ambulance. They gave me something to make me throw up the rest of the gluten in my stomach and gave me a saline IV. I was extremely weak I thought I had the flu or had food poisoning until I read your post. Now I am wondering about the gluten!

    • Oh Melodie, the idea of going through that on an airplane just took my breath away!

      It's amazing the connections we make after the diagnosis and as we share our experiences with others. What we may have once thought was nothing more than a random fluke, becomes one more important piece to our individual gluten puzzles.

  3. Cara says:

    This sounds every much like the story of how a fellow gluten free church member was before she found out she had Celiac. I'm going to share this link with her.

  4. Elizabeth Becker says:

    Thank you for sharing your story. I have had several episodes similar to this in the past 2 years. I never quite pass out, but it is a very different experience than just having "regular" diahhrea. My 16 yr old has celiac and while my husband and I both test negative for the antibodies, obviously at least one of us has the gene. I tried to connect these events to eating gluten, but there is never a clear link. I shall definitely take heed of your situation, however. We are a gluten free house, but I guess I need to look at removing all gluten from my diet as well…no more lunches out at Panera ;o(

  5. Shari says:

    I have been gluten and dairy free for 2 years, after a 6-week long episode of the liquid diarrhea. I hadn't thought about it, but now am sure that but several years prior to that, I had about a month of on & off intestinal pain. I would get it about 20 minutes after eating, on my left side. Kaopectate helped, but then I would have pencil thin bowel movements. My intestines HAD to have been inflamed for that. It just stopped on it's own and I only had one other short period of uncontrollable diarrhea before the 6-week episode. I really wish that celiac screening would become a regular screening process for everyone. I hate to think of the damage being done to people eating gluten that shouldn't be.

  6. moriah says:

    Heidi –

    So sorry to hear about all your 911 'adventures.' Glad you are now OK and you were able to survive all those 'incidents.' :) WooHoo! And thanks for sharing! Because you are willing to openly share how you are putting the pieces of your puzzle together, I am better able to put the pieces of my puzzle together. (And I, too, was my Daddy's girl and he was my "Rescue Ranger." Treasure that relationship!) Secondly, I am now wondering if my Dad's story couldn't have been re-written if only he been diagnosed Celiac. He had chronic sinus problems and suffered from allergies no matter where he went – MI, AZ, FL, TX, etc.. His stomach also gave him tremendous trouble – days in bed sometimes with all the symptoms you described above. But no matter if he went to the family physician or Mayo Clinic the 'diagnosis' always basically came down to "his nerves." So he lived a life full of sickness until pancreatic cancer took his life three years ago. Since cancer of any kind didn't run in the family and he never had a sip of alcohol in his life, the medical world was a bit confounded as to how he developed P/C. I was diagnosed with Celiac, but we all just thought it was a result of Lyme. Until we recently had one of my son's tested for Celiac (he has Type 1 diabetes). It came back that he carried the gene from both his mother and father. This not only means that our entire family needs to be GF to prevent any additional auto-immune illness; but it also means that one of my parents carried the gene as well. Hmmm…. Think there's no doubt as to which one of mine did. And it makes me wonder "what if?" However, determined to learn from the past and to make a negative a positive, our family will live the GFree lifestyle so that each one of us can enjoy life to it's fullest – without unnecessary sickness or disease and I will live to tell others the importance of being checked for Celiac. It is way too common and much too overlooked – which is really a shame as so much heartache can be avoided by just a simple test and learning how to eat for your health! Thanks, again, for sharing!

    • Stacy says:

      I think there is a link between pancreatic cancer and celiac disease. My grandfather died from it nearly 3 years ago as well. Two months before he died, my mom and I were diagnosed with celiac. I lobbied to have my grandfather tested before he died just to see if he was also celiac, but we ran out of time. :( But in retrospect, he had so many of the same GI symptoms that my mom and I had that it was scary. My mom now has CT scans every six months to monitor her pancreas. I've been gluten free since October 2, 2008 (tomorrow makes 3 years!) and I honestly believe that it was the best thing that ever happened to me, not just because of the vast improvement in my health, but also because of the hopefully lowered risk of PC.

  7. Tandy says:

    Something else to consider, as to why you continued to eat gluten for 9 years after that and seemed to have seasonal issues is the histamine levels in your body. I've recently been diagnosed with histamine intolerance and so have to watch everything I eat, not just the gluten. But your body has a natural level and when the environment and food you are intolerant or allergic too increase that histamine level, your body gets overloaded and you finally get symptoms, some of which don't always correlate to the issues you have. I have a friend with similar issues and she is just now realizing how overwhelmed her system was with histamine.

    It is possible that your other undiagnosed food allergies were playing into it which is why you were able to continue to eat gluten for 9 more years. Between my friend and I, we've started piecing together the oddities of our medical pasts and find that a lot of things make sense now that never made sense before. By controlling our histamine levels through diet, our other environmental allergies are easier to deal with and other food intolerances are not as severe. However if you are new to controlling your histamine levels through diet, expect to go through a phase (of months) where your body reacts more strongly to everything you are allergic and/or intolerant to, as your system resets and finds its new balance. My friend is currently in this phase right now and is finding it very difficult and depressing, when she makes a mistake and suffers the consequences.

    I've been 1 year histamine & tyramine food free and 9 months gluten free. I find I still have bad days, but those are so much more tolerable now that I am in better health overall. I know that you probably do not have my same issues, but just thought that some insight into the body's histamine level and what it can do when it is overwhelmed, might help fill in a few more blanks. Thank you for sharing all that you do. You are one of the first blogs I found to be very helpful when I was starting down this path a year ago and I still look forward to every recipe you share (though only a few of them are safe as is, for my specialized diet) because they open my eyes to new ideas and ways to change this or that to fit into my diet.

    Thank you!

  8. Oh my god this is exactly what was happening to me the year before I was diagnosed with Crohn's!! Just another confirmation to me that I definitely have undiagnosed Celiac in addition to the CD. The same exact thing, I would literally pass out off the toilet after bad bouts of diarrhea….. insane. I've never heard of this before. Thank you for sharing!!!

    • Hi Jen!

      Did you know that Crohn's (in and of itself) can also cause villous atrophy of the small intestine (just like that seen in celiac disease)? Check out this article by Andrea Culliford, MD, David Markowitz, MD, Heidrun Rotterdam, MD, and Peter H. R. Green, MD

      • Janis says:

        My sister has Crohn's. she used to have problems with diarrhea, but not anymore. She doesn't have celiac ( was tested for it), but she stays off gluten because she feels better. From her experience, the best way to control the Crohn's is through diet. She has always had a problem with certain foods triggering attacks and cutting those out helped her.

  9. Diedre Weaver says:

    Thank you for sharing! Oh MY GOSH! It's freaking me out, your story. With how similar it compares to mine except for the abulance trips! I have had a trip to the hospital once for dehydration and severe cramping. But that's scary, I do feel like I'm passing out after the wicked water diarrhea and I can't seem to help but fall asleep. Corn also does that to me…..even a little corn starch. I carry two of the genes for gluten sensitivity and had problems ALL MY life with stomach aches, long trips to the bathroom, anxiety, depression, mood swings oh the list can go on and on. I have been gluten free for over a year, with a few mess ups like going to the dentist and they put the pasted to polish my teeth (that isn't gluten free I didn't know it) I was SOOOOO SICK from that. It took me a long time to recover from it. Thank you for sharing it's so hard for other people to understand.

  10. Jeni Clark says:

    SO GLAD you posted this because I have YET to meet someone who has a story like mine and now I have! Many!

    When I first began suspecting gluten, I would cheat. Within (to the minute) 4 hours of cheating my body would go into this awful shock. I would begin to tremor, then the room would spin, nausea would set in and then I would go back and forth vommitting and diareah for about 14 solid hours. PURE HELL! Understatement! HELL! This went on for about a year, about every 3 months even after STOPPING the cheats. It was like my body was in some kind of detox mode… from years and years of me eating everything I shouldnt have been?? I dont know what else?? THANKS SO MUCH for posting!

    • Jeni Clark says:

      Had to mention this too..

      Alcohol.. I was always able to drink wine, beer whatever–not much–but a glass or two… then the reactions began.. violent… same as I describe as above.

      The reactions literally are hell. Pure suffering. And for those of you above who have experienced those too, ugh,… my heart goes out to you! And yes, I would be on my bathroom floor in a semi coma state… tremoring and unable to get up. SCARED to death that I was DYING. That is just how it felt.

      I do have this underlying "fear" about everything I put into my mouth from this past trauma. A bit on edge as to IF a food is going to cause me a reaction.

      It would be SO NICE to be able to have a glass of wine wiht my husband. I could care less about the wheat, dairy, soy,corn, potatoe blah blah blah… I just want a glass of wine! :(

  11. Michelle says:

    Thank you.

    Really, really, really, thank you. I will be heading to the Doctor later this week with a print out of your post. For almost 15 years I have had all of the symptoms you have mentioned above, and more. I have cut out various things from my diet which I know that I need to not be eating. This has improved some of my symptoms, but not all of them. Gluten was not one of the things I had cut out.

    Last year my naturopath put me on a gluten free plan which I maintained for 6 months, until I went on holidays for a month, and I chose to not worry too much about it. Once home I have been back on the plan but not quite so strict. And have had a few of these 'episodes' although not as frequent as before the first gluten free plan. I had never put the two together since there was no obvious link as one did not always immediatly follow the other. And when it did, I would blame it on possible cross-contamination with something else I couldn't have.

    I felt great not eating gluten the first 'strict' time, and now that I look back, I never once ended up spending the night on the bathroom floor, sometimes not really concious.

    I can't wait to see if this is the final link to figure it all out.

    Thank you, Thank you, Thank you.

  12. dori says:

    Thank you for this post! A lot of similarities with my past…the first time this happened to me, I fainted running to the bathroom-and ended up ripping my thumbnail off as I hit the bathroom counter with my hand!@#$! Since then, I have never passed out again, but have come ridiculously close many times…I know now to get cold wet washcloth before I ever sit down, but often have to lay down on the floor to keep from passing out. Used to think it was fried foods; then preservatives on salad bars…I am 56 years old and WON'T go to Dr. for this again; been to about 15 different drs all of them saying I had irritable bowel (no duh) and gave me anti spasmodics without ever running any tests. I too would get uncontrollable dio for weeks at a time, sometimes only passing mucous. Probiotics and activated charcoal have made life bearable…but again, no thanks to any doctor. Also had itchy rashes on fingers, elbows and knees all my life; Drs would shrug and say they didn't know what it was. The old saying is "misery loves company" but I'm here to tell you "misery NEEDS company"! Thanks again.

  13. Kristin says:

    Wow! For 14 years I would have episodes like this. Not as severe as yours but would still end up in the ER. It would take me a month or longer to recover from one and I would always tell my doctors it felt like I was starving to death and no mater what I did I couldn't get a drop of saliva to appear in my mouth! I have never even heard of this until now! My celiac blood test was negative in 2006 and 10 months ago I removed gluten with amazing results and have been strickly gluten free ever since. I am completely convinved I have Celiac but am unwilling to eat gluten again for an extended period of time to have the biopsy. I do not need a positive test to know gluten is my problem! Thank you Heidi for a very informative, unknown issue!

  14. LJRich says:

    Yes. This sort of thing happened to me back in June of this year. I've only been gluten free for going on 3 years, now. And, I've never been particularly careful about my contact with other people who eat gluten. In June, I felt fine one minute, but gradually, I started to exhibit symptoms that I was getting the stomach flu. Hubby had it a couple months prior, and all my 3 boys had it, but I never got it. That night I felt terrible and I ended up spiking a small fever and sitting on a toilet for eons. The next morning I was bleeding from the inside. I was scared, but I figured that was how I was going to deal with the stomach flu, now that I was a celiac.

    Like you, I was asymptomatic until 2009. I went downhill rapidly, though, and cutting gluten was the only thing that helped me.

    Back to the story, the second night I hadn't eaten anything, was still having bloody mucus stools, but decided to eat some homemade chicken soup. BIG.MISTAKE. The next morning I could barely function. I stumbled out of bed after hubby went to work and started bleeding again. I figured it would go away and was only the result of me eating too soon. 35 minutes later I was on the phone telling him to come home immediately. We went to the ER and I was pumped up with 3 bags of saline. They told me it was likely either the stomach flu, or salmonella. But, I suspect it was cross contamination because we hadn't eaten anything recently that would have had salmonella in it, but my family still ate gluten and I still kissed a gluten eater shortly after he ate gluten. Previous bouts with getting "glutened" rendered me a shaking, clammy pile of mess in my bed for 72 hours. My poor husband has had to wake up with me in the middle of the night with me practically in epileptic seizure fits.

    So, while my story is a little different, and definitely not as severe, I really do think yours was celiac related. Just going by what I've had happen to me from eating gluten.

  15. Jessica says:

    I never thought about it, but I wonder if that is how I kept getting severely dehydrated within a day. I had c.diff colitis when I was in undergrad and they were shocked that I was dehydrated severely within 3 hrs of being tested for dehydration.

    Then the few times I have had surgery, before going GF, I was frequently returned to the ER for dehydration after surgery. Humorously (now), they always give you crackers and cookies after surgery. My stomach was empty so no wonder it revolted after being given pure gluten.

    Thank you for sharing! I have been educating my friends and have seen many go GF! I'm happy since I have friends to share my GF experiences and foods with :-)

  16. Carol D. says:

    Heidi,

    Thank you so much for bringing out ideas and experiences that help others to piece things together. I was diagnosed with celiac disease a year ago, went dairy free 6 months later, and now am mostly grain free trying to heal. Looking at the past I feel it's a puzzle that has so many missing parts, especially in trying to determine how long damage has been occurring. When I was 2, I had ulcers in my mouth, my throat, my esophagus, down into my digestive tract. I was written up at the Cleveland Clinic, apparently, where my father was a resident cardiologist. Now I wonder if that was an indicator of celiac damage. I was diagnosed with Type 1 diabetes when I was 12, Graves' disease in my early 20s, and yet with those autoimmune issues, have had 5 healthy children (although I also had 3 miscarriages).

    After my third child, I awoke in the middle of the night lying in a puddle. I thought I had wet the bed, and was so embarrassed! But when I realized it wasn't urine but liquid diarrhea, I was even more mortified! My wonderful husband helped get me to the bathroom, and cleaned up the mess. What a horrible memory. :( I spent the rest of the night in the bathroom, as well as the next day. My father got me a prescription for something to stop the diarrhea, and made sure I stayed hydrated, and we all chalked it up to "something" I ate, even though I hadn't eaten anything unique. Now I'm wondering if that, too, was celiac related. I had subliminated that memory until now, thank you very much! :)

    I'm glad that those crisis events seem to be staying in your past! Thanks again for your humor and perseverance and common sense as you manage all the twists and turns of a life with extra challenges. You help others with similar issues muster up a smile and some determination to keep going!

  17. Amy says:

    It is really alarming, and I think so many of our issues could be resolved if people would just go on a gluten free diet! But, as Dr. Rodney Ford says, gluten is ADDICTIVE!

    FYI, you may be interested in something I recently found online while searching on youtube that currently exists and is said to cure coeliacs and those with gluten intolerance. I have blogged about it recently at: http://wp.me/p1244N-6k

    Be sure and check it out!

  18. delise says:

    Heidi,

    Your post is interesting to me too…as well as these responses. I had (misdiagnosed) IBS most of my life and these episodes you describe were a random but monthly event, only mine were not life threating, just life changing (like don't go ANYWHERE without at bathroom). I hate to mention drugs but my lifesaver was Levisen a little pill to you put under your tongue that would quickly relax the bowel contractions. For five years I kept one in my pocket…always. It's an antispasmotic not a diarrhea drug so things eventually work themselves out, just not so rapidly. Gluten free I never need them unless there's an exposure. I don't even have a prescription but I'm thinking about getting one just for those rare "Oops that had gluten and I am not in a position to let it out" moments. I'm NCGI as well as one of my three daughters.

    As to the mention of pancreatic disease and DH, my father is currentently terminally ill with pancreatic cancer. Strangely enough, he is now (unwillingly) gluten free. My mother, the cook, went gluten free a year ago with me so he simply went along with it. When he left for a vaction in May he had one delicious piece of pecan pie (gluten of course) and became very sick, he wanted to get his body used to gluten again so he kept eating it until he was so sick he was hosptialized and the cancer was found. Prior to this he always had seasonal (summer) whelps on his hands and feet. The rash was never identified and the "guesses" were so stupid I can't remember them. He also has bipolar disorder.

    Now, he's been gluten free all summer because he just can't touch it without dire consequences. He had no summer rash at all (even though he was on heavy chemo which should have aggrevated any latent problem). He has never been so genuinely kind and even tempered, and, despite all predictions he has no pain. He wasn't even predicted to live this long and he gained five pounds back last week.

    No one, family or doctors, attributes any of this to gluten. The suggestion is not even seriously considered. Supposedly he had one neg. celiac blood test and during an upper endoscopy (despite my plea to grab a small intestion biopsy while they were there) "they looked at it and it looked fine." So, I feel sure this cancer will eventually get him but for my two siblings and the eight grandchildren I'd love any feedback.

    Thanks

    • delise says:

      Just answering my own question I just found this on celiac.com :)

      "Peter Green wrote Celiac A Hidden Epidemic and in it he says DH patients often test negative for Celiac, however they are often the most sensitive to cross contamination and have a higher incidence of lymphomas and other cancers secondary to Celiac. I wouldn't believe your Dr. on that one. A negative blood test does not mean you don't have Celiac. A diagnosis of DH DOES mean that you have Celiac."

  19. Thank you for sharing this story. Truth is, we may never know what was the gluten and what was something else. But my suspicions are confirmed as far as I'm concerned. What I do know is that my son had all sorts of problems his whole life. He ended up in the hospital several times with unexplained bouts of diarrhea requiring an IV. He also had a couple suspected appendicitis attacks (almost went into surgery and then it subsided) along the way.
    The big crisis that led us to discover his celiac disease actually seemed to have nothing to do with his digestive system. His hip filled with fluid and he needed emergency surgery. When the doctors couldn't figure it out… my partner did! You can read our story here: http://theliberatedkitchenpdx.com/meet-the-libera

    -Joy

  20. Molly says:

    I feel for you so much! I had a horrible allergic reaction to shrimp when I was 11, nearly died, and was sick on and off for the next ten years before being finally diagnosed with celiac. Like you, I never really had the classic symptoms like super low weight or gastro issues. I had hives a lot, debilitating headaches that the doctors though might be migraines or cluster headaches, had sinus infections every month/every other month, and, like your story above, the occasional serious stomach issues (more often violent vomiting, but the diarrhea happens too! ugh!) coupled with passing out. To this day, I will occasionally have an episode like you described above after getting "glutened," but other times I'll realize I was "glutened" and just have a mild headache. I always thought it was the amount of gluten in the food, but maybe it's the type…..thanks for sharing!

  21. Car T says:

    I’m so glad you posted these stories. I follow your blog and it has helped me to learn sooo much about Celiac’s Disease and gluten sensitivity. Eleven months ago I put myself on a gluten free diet to resolve issues of constipation and fatigue. In February of this year I decided to be tested and formally diagnosed, so I put gluten back into my diet. This “gluten challenge” has proven to me that I need to stay away from gluten! I have been sick with skin, gut and gallbladder like symptoms. I’ve also been lightheaded. Although I haven’t passed out, there have been a handful of times when I thought I was about to. I have started seeing a nutritionist/chiropractor (among other doctors) who deals with food allergies. She suspects my symptoms of lightheadedness, drunkenness (w/o having had a drop of alcohol) and the urge to pass out are related to the combination of weakened immune defenses (tired of fighting off gluten allergy) and an over production of yeast in my body (Candida albicans). She sent me an article that says “…yeast produces a series of chemical products as waste, among which are acetaldehyde and ethanol. Ethanol is alcohol, and there are cases of people who have never drunk a drop of alcohol yet are daily inebriated. Acetaldehyde is produced as the alcohol breaks down and is about six times more toxic to brain tissue than ethanol…” What causes yeast overgrowth? Several things, one of which is food allergies. From what I understand (and I’m not a doctor), you can live for quite some time with a yeast overgrowth and have “minor” symptoms, but once the body is dealt a good dose of stress, more severe symptoms can arise quickly….Do you recall being more stressed than usual before your episodes? I wonder if that was the “straw that broke the camel’s back” so to speak and caused you to pass out, etc…

  22. Rachel Lewis says:

    My episode like this was actually why I am now GF, though not as severe as yours. A few months back, I started having essentially flu like symptoms all of a sudden. Diarrhea, throwing up, and they kept getting worse, so after nearly 24hrs of this we decided to head to the ER as a precaution. (I had just had a baby and was breastfeeding her.) I had been trying to keep eating and drinking as normal, worrying about my milk supply, but they were literally going right through me. Thankfully at the hospital we had a doctor that told me to stop eating, that it was only making things worse. She asked about my kidneys and ran a test to make sure they were fine after I said they felt kind of sore (now I think that was my adrenal glands) but when the test came back fine for that she sent me home. I’m not sure what it was about that experience that made everything click for me, but after that I stopped eating gluten. My family has a strong history of being gluten intolerant, and now after reading your posts I realize more than I thought we did – irregular painful periods, dizzy and light headed spells, low blood sugar, anemia, sensitivity to dairy, psoriasis, extreme fatigue, you name it we have had it. I will ask my husband about it tomorrow and see what he remembers from the experience – I know he was instrumental in the decision to go off gluten.

  23. Isabelle says:

    I went through almost the same thing as you did. Made 2 ambulance trips to the emergency for fainted while emptying myself in the bathroom and having extreme abdominal cramps at age 15 and 16, like is somebody was playing in my belly wtih an X-acto knife!
     It happened to me several times after that, for years and always after having meals like pizza, whole-wheat pasta, smoked-meat on rye bread… and of course BEER ( in fact the first beer I drank sent me to the hospital!) but stayed home and just tried to tough it out, because I was told by my parents that I was being over-sensitive and that a little indigestion killed nobody!
    Now, several years later, I’m sure these crisis where linked to celiac disease. Right now i’m in the process of being checked up by a gastroenterologist after years of diahrrea, anemia, extreme mouth ulcer, poor weight, abdominal bloating, to name just a few.
    The problem is that after years of keeping a food journal and trying different diets I found the culprit; GLUTEN! It is the only thing I removed from my diet, but as strictly as if I was celiac and gradually all my symptoms are disapearing! I’ve tried on a few occasions to reintroduce the offender but it was disaster 30 minutes after the ingestion. It gets me so sick and it last for 4 days to a week. 
    So now with a gluten free diet, I feel way better but tests wil not come back positive and forget about a gluten challenge, I’ve tried it and couldn’t do a week, and I have to work and take care of my kids not be sick like a dog.
    So, I have ordered a test from Enterolab, we’ll see…
    But the worst part of all this is that my mother told me that when I got hospitalized for those mysterious crisis, doctors made blood tests which made them want to investigate more, they wanted to do an endoscopy to check ou my small intestine because they were suspecting celiac disease! My parents rushed me out of the hospital saying that I was eating wheat since always and that it was impossible it was making me sick, and they would not let me be a guinea pig to science. The idea of doctors invading my body with cameras was totally sick to them!
    So now I’m 33, I will problably never have a real diagnostic, I’m trying to forgive my parents for being so ignorant years earlier, because my life would probably have been different not being sick all the time, not to mention the sequels that I have like early osteoporis. Worst of all, my pediatrician is very skeptic about testing my kids (one of them as symptoms screaming out loud) because she think I’m adhering to a trend wich is popular right now: the gluten free diet to lose weight! ( that is totally stupid, I’ve gained 15 lbs the first 2 months and still gaining more, of course I was so skinny)
    So all that to say that you are not alone, I’ve had those celiac crisis too! I just wish my parents listened to common sense back then. Maybe someday I will know for sure if I’m celiac too!  

  24. Ed says:

    Yes yes and yes!, I absolutely went through a similar experience. And like so many others I had no idea what was causing all of this. The first attack happened in 09, then another one early this year (2012) and the last one just this past October 2012. The two previous times I wound up in the emergency room. But the twist to my story is, without knowing what was wrong, and repeated visits to my doctor and being treated for the symptoms and not the root of the problem, the only thing I knew that helped in any kind of way was alcohol. So each time I wound up in the emergency room they took it as alcohol poisoning. They hooked me up with an IV gave me some ativan and sent me on my way.
    So I got this alcoholic label hanging on me now, and when I had this last attack in October, brain fog and confusion set in once again and I turned to the only means I had again. Well, this time I was so confused I took my families advice and admitted myself into rehab. By the second day there, the brain fog went away, I started thinking clearly again and realized this wasn’t what I needed. So I left even though family said they would disown me. Went home, gathered all my medical history, went to my doc and showed him this pattern of me being terribly sick every three months.

    I actually did a lot of research on my own trying to figure out what was wrong with me all this time. I thought it was mold at one point. Sinus infects every other week. Constant heightened state of anxiety, chest pains, insomnia, pale skin, dark circles under the eyes, etc. etc. But just this past summer I was searching around on the internet with my symptoms and low and behold I run across GLUTEN.

    So I told my doc I wanted the test, and sure enough Celiac disease has been the problem all these years. I am still battling with all the damage my body took, but I can see the light at the end of this nightmare..

  25. Ed says:

    Oh, I have to add one more thing. My dog has had these “allergies” for years as well. She has made a remarkable turn around now that I get her grain free food!

  26. Emma says:

    My son is 2years old and started having classic symptoms beginning me 2012 and has suffered a celiace crisis only a few weeks ago! He had all the “classic symptoms” but the gp somehow managed to miss this diagnosis! He’s the youngest child to have a celiace crisis in the UK! Doctors as now writing a medical journal on this to make people aware a lot more!

Trackbacks

  1. […] this week, Heidi of Adventures of a Gluten-Free Mom has an amazing story up about Celiac Crisis: Rare or Rarely…. I was so moved reading it. Even though I know she is ok now, I was seriously scared for her […]

  2. […] Kelly from Adventures of a Gluten-Free Mom often speaks about her lack of classic symptoms, saying she lays somewhere between the definition […]

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