Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Flair Ups


Kiki

Recommended Posts

Kiki Explorer

Does anyone ever experience a flair up in symptoms regaurdless if they have been glutened, because I know my biggest symptom is naseau and tummy rumbling and just plain out feeling like garabge and the big DD, but I know for a fact that I have not been glutened. My symptoms just flair up for no good reason I always think anyway... Does anyone know what im tlking about? How do you cope it is so frusterating.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor

Kiki:

Every one reacts differently. So you won't get one answer.

Gluten is every where and to me, it's almost impossible to not get glutened as best you try.

As careful as I am. I work in a gift store, gourmet store for fun. We have designer beer, scone mix and lots of gluten stuff. I ring it up, I lick my fingers to get out the pretty tissue for the pretty bags.....

It is soo easy to get zapped. We don't live in balloons, and for goodness sake, I hope that none of us do.

We just need to be as careful as we can be. :)

bklynceliac Apprentice

absolutely. the hardest thing for me has been so many random flare-ups making me feel like I'm just as sick off gluten as I was when I was eating it daily. In my personal experience, the frequency of seemingly inexplicable flare-ups decreased drastically when I 1)eliminated dairy 2)began taking Colestid and 3)got some anxiety meds for the days I knew were going to be tricky. Something in that combination has made a big difference for me. Probably a bit of each.

daffadilly Apprentice

eggs sometimes make me nauceous also some of the gluten free flours do the same thing, if you are eating any gluten free crackers, breads that is probably your problem...

try Lundberg Rice Chips and Rice cakes

Ursa Major Collaborator

What you think are celiac disease flare ups could very well be symptoms from intolerances other than gluten. You may want to consider the possibility of having other intolerances, and maybe do an elimination diet.

Gamecreature Rookie

How long have you been gluten-free? I've only been gluten-free for a month and a half and I get symptoms out of the blue, mainly because my intestine's only begun to heal and many of the symptoms from malabsorbtion are similar to the symptoms I had from gluten (bloating, gas, etc.). Even as I'm typing this I'm feeling a bit queesy and I'm not sure if it's from Gluten or just a reation to the food not being digested properly. My usual course is to just sit it out. For me, it passes pretty quickly which makes me think it's not gluten. But as has been noted above, everyone is different.

Kiki Explorer

Ive been gluten free since April.. i guess thats still very new. I may have other intolerences I just dont know what I would eat if I got rid of other things you know its so limited that if i egt rid of anything else Ill be living off of fruit and veggies. Yuck , boring! But i understand were your coming from I think I may try it. Thank You


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest cassidy

I would think that you are eating something bad if you are having those symptoms. Sometimes it is hard to figure out what caused it, but I would think there is always a cause.

I'm pretty sure that I don't do well with chocolate, potatoes, tomatoes and oranges, however they don't make me feel terrible and I haven't decided to cut them out totally yet. It has taken a while to figure all that out and I'm still in denial.

You might want to keep a food diary so you can see if these "random" events have a pattern. If they make you feel as bad as gluten, I would think you would want to cut them out. Or maybe you are being glutened by cc or you have a cosmetic or something that you forgot to check but don't use everyday. It does take a while to get rid of everything.

Yenni Enthusiast

I can totally relate to flairups. And it seems like I haven't been eating anything bad.

I stopped with Gluten in May, but I am sure I have gotten cross contaminated bunch of times because there were so many things I didn't know had it and I used the same pots and pans as the rest of the family.

So I really only started in October. (Stopped with Dairy in June and Soy in October too.)

As far as I know I have no more intolerances, but I am wondering about Corn and Egg... I really hope not though, cause like you said, what is there left to eat?!?!?

(I have allergies too.)

I seem to do well for a week or so and then BAM! I get sick for a week. The last two times it was after I ate Corn Chips and Brownies (it was free of everything bad but egg). I don't know if I got cross contaminated by the Corn Chips and if it was the Egg or the Chocolates in the brownies.... I get sick for a week when it happens. Or it takes me a week to get back on track. It is really bad. Grr...

But I do have other times when I have been totally clueless on why I got sick. I live in a house that is full of Gluten... :(

valzues Rookie
I can totally relate to flairups. And it seems like I haven't been eating anything bad.

I stopped with Gluten in May, but I am sure I have gotten cross contaminated bunch of times because there were so many things I didn't know had it and I used the same pots and pans as the rest of the family.

So I really only started in October. (Stopped with Dairy in June and Soy in October too.)

As far as I know I have no more intolerances, but I am wondering about Corn and Egg... I really hope not though, cause like you said, what is there left to eat?!?!?

(I have allergies too.)

I seem to do well for a week or so and then BAM! I get sick for a week. The last two times it was after I ate Corn Chips and Brownies (it was free of everything bad but egg). I don't know if I got cross contaminated by the Corn Chips and if it was the Egg or the Chocolates in the brownies.... I get sick for a week when it happens. Or it takes me a week to get back on track. It is really bad. Grr...

But I do have other times when I have been totally clueless on why I got sick. I live in a house that is full of Gluten... :(

I have only know for a month that I have this disease. I have had it for along time due to all the symptons though. I have been so strict on this diet and YES I am too having some bad flare ups!!! I think it is due to time and healing. Not only that if you have much stress in your life like I am right now it will make you feel like crap! Get to feeling better!

I have only know for a month that I have this disease. I have had it for along time due to all the symptons though. I have been so strict on this diet and YES I am too having some bad flare ups!!! I think it is due to time and healing. Not only that if you have much stress in your life like I am right now it will make you feel like crap! Get to feeling better! Valerie

Jean05 Newbie

Anything with soy and lactose can cause the same intestinal symptoms as gluten does for me. I have dh and hairloss along with intestinal symptoms when I eat gluten. Sometimes the dh will flare up and I worry that I accidently ate gluten but I think it's more likely the iodine.

I do believe you can be as gluten free as possible. You have to be very careful about what goes in your mouth especially your fingers!!

Marlene Contributor
absolutely. the hardest thing for me has been so many random flare-ups making me feel like I'm just as sick off gluten as I was when I was eating it daily. In my personal experience, the frequency of seemingly inexplicable flare-ups decreased drastically when I 1)eliminated dairy 2)began taking Colestid and 3)got some anxiety meds for the days I knew were going to be tricky. Something in that combination has made a big difference for me. Probably a bit of each.

Just wondering why you started taking Colestid? I had my gall bladder removed this past May because my specialist was sure that was my problem. This was before I knew I was gluten intolerant. Needless to say I got much worse afterwards -- my food flew right through me and was not digested AT ALL. I am doing much better on the Gluten-free Casein-free diet but I still have these days where I get random flare-ups. It usually starts with a rather pronounced pain in the area where my gall bladder used to be. Within 5 minutes I need to find a bathroom. It's not diahrea anymore but it's still pretty urgent and I pass a lot of stool :( It really gets me down because I can never figure out what I am eating (if anything) that causes this. I think it has something to do with no gall bladder. Do you still have your gall bladder?

Thanks,

Marlene

key Contributor

Same thing here. I have been gluten free for a year and a half. I will be doing great for two weeks or even a month and then I feel as if I have been gluttened and it takes me a week to get better. It is VERY frustrating. I am going to quit using shampoo with wheat in it and see if this helps. I also haven't replaced my pots, but I think I will. SOmeone else mentioned my can opener.

I also eat too much dairy and that could be a problem, but that is frustrating, because I am already vegetarian and for weeks at a time I can eat dairy without a problem, so I don't feel that is the problem.

Sometimes I think it is companies that aren't being very careful about CC. I read somewhere that they did a study and up to 25% of companies were not following rules for CC issues for allergies.

For some reason I have had the hardest time accepting that I am SO ultra sensitive, but it does seem to be the case. I am SO much better since I quit eating out completely.

I have a house full of gluten too and still cook gluten food.

Yesterday I didn't eat anything weird that I knew of. I was starving and had a pizza made out of Kinnikinnick bread. My stomach hurt so bad and major indigestion after eating it. I didn't overeat, so I don't know. It is VERY frustrating when you try SO hard and for me I will be doing so good and then BAM! It really sucks.

I also read that some adults can take up to 2 years to fully recover after being gluten free.

Hope you figure it out and I do too!

MOnica

Yenni Enthusiast
Same thing here. I have been gluten free for a year and a half. I will be doing great for two weeks or even a month and then I feel as if I have been gluttened and it takes me a week to get better. It is VERY frustrating. I am going to quit using shampoo with wheat in it and see if this helps. I also haven't replaced my pots, but I think I will. SOmeone else mentioned my can opener.

I also eat too much dairy and that could be a problem, but that is frustrating, because I am already vegetarian and for weeks at a time I can eat dairy without a problem, so I don't feel that is the problem.

Sometimes I think it is companies that aren't being very careful about CC. I read somewhere that they did a study and up to 25% of companies were not following rules for CC issues for allergies.

For some reason I have had the hardest time accepting that I am SO ultra sensitive, but it does seem to be the case. I am SO much better since I quit eating out completely.

I have a house full of gluten too and still cook gluten food.

Yesterday I didn't eat anything weird that I knew of. I was starving and had a pizza made out of Kinnikinnick bread. My stomach hurt so bad and major indigestion after eating it. I didn't overeat, so I don't know. It is VERY frustrating when you try SO hard and for me I will be doing so good and then BAM! It really sucks.

I also read that some adults can take up to 2 years to fully recover after being gluten free.

Hope you figure it out and I do too!

MOnica

I have been thinking about if it is even possible to get fully recovered in a house with gluten in it... I live with my husbands family right now and the house is full of it. Crums in the kitchen 24/7, the grandkids (who are here every week day) don't wash their hands very well so there are sticky stuff everywhere, they bathe the little girl in Aveeno Oat stuff and do not rinse it of, my mother in law uses hand lotions with oat all the time... It is just hell for a gluten intolerant it seems.

But even if one do not live in a house that is quite as full of it, it seems hard still. Especially if one is sensitive (seems like I am too).

I have decided not to eat anything processed in a non-gluten/soy free factory for a while. Seems the stuff that is made in a dedicated factory is the only stuff I can get away with so far. I have gotten sick from Corn Chips, Creme of Rice.. other stuff that I can't remember now. It is scary to try new stuff now.

Interseting to hear that 25% fail to follow the CC rules. But I believe it. I have worked in a coffee warehouse and I know how bad it can be there.. I have two friend that has worked with food in factories too. One worked with potatoe chips and the other at one of the Taco places. It was pretty bad they said. None of them eat that stuff now.

Sure ain't easy. :(

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748

    Mabelie
    Newest Member
    Mabelie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.