Celiac Disease Flare-ups…without eating any gluten?

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Posted on : 28-03-2010 | By : Elizabeth | In : Personal trials and tribulations

So…I have been in bed and out of commission for the past week…problem is…I don’t know why!  I have been gluten free for 6 years, I am very careful about what I eat, where I eat and even HOW I eat.  So, is it possible to have a “flare-up”, without eating gluten?  This is what I want the answer to.

Monday, my pulse skyrockets to 170 bpm.  I was able to get it down in about half an hour.  Then, a couple of hours later, while driving, it does it again…this time with sweats, palpitations, chest pain and the whole bit.  I was ready to drive straight to the ER.  I make it home, call the Dr and make an appt for 2:00.  I fell asleep for a couple of hours, went to the Dr and the Dr orders EKG, Echo, 24 hours heart monitor and blood tests.  He wasn’t happy, as my resting bpm was over 100.  So, I got these tests done on Thursday…I am sure my heart is fine…as these are my “common” celiac symptoms.  My heart has been fine ever since, I have had shortness of breathe, but the palpitations and pulse have been closer to normal….this is where it gets weird….starting Tuesday….everything that goes in one end…comes out the other!  A true tell tale sign that I have eaten gluten.  My husband and I went through EVERYTHING that I had eaten…I am telling you…NO GLUTEN.  This lasted for 4 days.  It didn’t matter what I ate.  The only thing I could keep down was jello.  Needless to say, I was in bed, as I had no energy and couldn’t really walk, do to the pain in my abdomen.

NOW…I know I am a nutritionist and I should know things like this…but this is not making any sense to me AT ALL.  I have to be honest though, I started eating dark chocolate covered Goji berries and I got better almost overnight.  I am still week and my stomach still makes horrible gurgling sounds every time I eat, but at least it is staying in my system.

When I was discussing this with my mother, we both noticed that I go through this every year or so…no gluten…but a week or so of all the symptoms….does anyone else go through these “flare-ups”.  I haven’t run into anyone that has yet…but I would love to know if there is anyone else out there!!

  • Cassandra Sharron
    I have the same symptoms "My husband and I went through EVERYTHING that I had eaten…I am telling
    you…NO GLUTEN.  This lasted for 4 days.  It didn’t matter what I ate. 
    The only thing I could keep down was jello.  Needless to say, I was in
    bed, as I had no energy and couldn’t really walk, do to the pain in my
    abdomen." have you had a small intestine biopsy.
  • Pastor Rae
    I just found this blog and I'm grateful. I've been gluten free for 14 years. I have "flare-ups" like many describe which are annoying. But what is more frustrating is that I have neurological problems bad enough to look like MS. I had been told for years that I must have Lupus or MS or something else if I am gluten free I can't have symptoms. Only now is a neurologist saying that all my symptoms are celiac-related. The idea that being gluten free means being symptom free is erroneous.
  • Managece
    I am so sorry that you going through this.  Do they know what is causing the symptoms?  Is it from damage that was done prior to being diagnosed, when you were still eating gluten?  Would you mind listing some of your symptoms, as there may be someone else out there with the same symptoms?  Thank you and I wish you the best!!
  • Pastor Rae
    The cause, other than refractory celiac disease (my stomach is  fine most of the time and there is no evidence of active celiac in the biopsy) is unclear. I was almost symptom free for about 5 years after the initial diagnosis. Then one day my right foot went numb. For the last 10 years (give or take) I've had symptoms that come and go with the exception of neuropathy in my feet (it seems to be permanent). I also have intermittent  muscle weakness and I stumble over nothing with alarming frequency. I have optical migraines that come and go. I have permanent, serious convergence insufficiency as well. I have other more typical symptoms that come and go also - skin rashes and constipation mostly. But I am gluten free with the rare exception of accidental ingestion. I hope this helps someone. Up until 2 years ago my MRI was clear...
  • Livz
    I certainly flare up too, and as much as it's unfortunate for anyone to have to go through that, I'm so glad I came across this page because I thought I might've had something more serious going on since I often flare up without eating gluten. The best advice I can give anyone at risk for flare ups is keep your stress level at a bare minimum if you start to get any symptoms or begin feeling more tired than usual! It's a warning sign I've had to get used to recognising, but such is the case with any autoimmune disorder. Best of luck to everyone!
  • Babygirl
    I have flare ups everyday and I am on a gluten free diet as well.... No energy and constantly hurt and get sick... The doctors give me meds but my immune system is very weak and I get immune to the medications... They need to find a cure because dealing with this everyday is horrible...
  • Managece
    Have they checked all your vitamins and minerals? Vitamin D? Potassium? Calcium? Etc...also have an endo check your cortisol and progesterone. Hope you feel better soon!!
  • panduhz44
    I feel your pain (literally)! I'm Celiac and I have flare-ups every few months despite being gluten-free and living in an entirely gluten-free household. Keep in mind stress can also play a role, and sometimes a very significant one. Best wishes!!
  • tcoaybe
    I came across your blog when searching for Celiac flare-ups. I'm 14 and just had a flare up today. It becomes hard for me to breathe and my stomach becomes very distended and it hurts a lot. My school uniform skirt is normally big and it becomes very tight, and its impossible to focus in class. Generally, when this happens 2 tums really help with the pain, but not the bloating... that is the uncomfortable part. I even have to leave school sometimes to lay down at home. Its a bummer but what can you do?
  • Managece
    Are you allergic to dairy or have problems with dairy? Do you eat a lot of sugar? That includes fruit. You may have an issue with candida...talk to your Dr. about taking probiotics daily. Most people with celiac have issues with sugar and intestinal candida. The probiotics won't hurt you...they will help with the bloating etc. You can get them over the counter...if you have any questions on which one's, please let me know.

    I wish you the best of luck!!
  • Just4u70
    Same thing happened to me. And I cannot figure out why. My only guess is that somewhere along the line the food processing was contaminated. It may say gluten free on the packaging, but how do you really know? I just had a flare up and cannot understand why or what I ate, but at least it is over. Maybe it is our bodies way of releasing the toxins?? Sounds weird, but there is no rhyme or reason to it. You just have to make everything from scratch and eat home. the flare ups are the worst. Bathroom seems to be the place to camp out in for a few hours until it passes. Had to resort to pepto bismol and immodium which took a few hours to work. just wondering what to eat now.
    I feel for everyone out there that tries to eat gluten free and has a flare up - it is just not fair. No one really understands it unless they go through it.
    Be well everyone.
  • Sguttridge
    YES i DO AND i CAN RELATE BUT MINE IS NOT BEING ABLE TO GO TO THE BATHROOM...NEEDLES TO SAY THE BLOUTING AND RELENTLESS PAIN GETS UNBEARABLE WISH THERE WAS SOMETHING i CAN DO i ALSO HAVE 5 ULCERS WHICH COMPICATE EVEN MORE FEEL BETTER SOON I JUST TAKE ZANTAC
  • Bitz
    Adrienne...this is my problem with Celiacs also...not being able to go to the bathroom.  It is so bad druing these flare ups.  Sorry for your pain.
  • Karen
    I have the same problem...not going to the bathroom..and a terrible pain in my side.
  • Adrienne
    Hi Elizabeth,
    I just found your blog by searching for information on celiac flare ups. I'm currently a week into the worst flare up I've had since going gluten free 1.5 years ago and I'm in a lot of pain! I know what caused mine unfortunately, for three days I was eating a new ground flax seed with my breakfast cereal without noticing the "may contain wheat" warning on the package. After a couple days of intense pain and "in one end, out the other" moments I went through every item in my house that I'd eaten when I found the culprit. Funny thing is thouroughly read the package before I bought it but the print was so small that I missed it. I'm experiencing a lot of the same symptoms as you, especially the horrible gurgling sounds after I eat anything substantial. That's my warning to get to the bathroom. (TMI I know, but that goes out the window when you have Celiac doesn't it?) Anyway hoping this only lasts a few more days. I'll have to make myself a batch of Jello and relax. Thanks for the info!
  • My name is Piter Jankovich. oOnly want to tell, that your blog is really cool
    And want to ask you: is this blog your hobby?
    P.S. Sorry for my bad english
  • Managece
    Thank you very much! Hobby? Yes and no. I enjoy doing it, but I am a nutritionist and I do try to make some money from this. None so far...but that's ok....I enjoy helping people and I am trying to get as much info about celiac out there, that I can. So, if I make money from it...great! If not...that's ok too.
  • Mamaciti
    I have a flare once a year or once every couple of years that I cannot pinpoint a source for. Stress plays a role but I don't think is the root cause. I have ended up in the ER twice needeng fluids in the past three years.No gluten that I can recall. I get really anxious when mine occurs becouse it is very hard to work when this happens and I have a very demanding job. I wish there was something we could take to shut it down or prevent it all together. Mine lasts for a week or more.
    Elise ,Nurse Practitioner.
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