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

Horrific Glutening


Emily Elizabeth

Recommended Posts

Emily Elizabeth Enthusiast

I have been horribly sick for 32 hours now and am starting to wonder if this is a "normal" celiac related glutening or if I am sick with something else. It is like I have been taking the colonoscopy prep pills for 32 hours straight (seriously - no exaggeration). Has anyone else been glutened this badly? If so, do you have any advice on how to get through it? I'm scared to eat anything so I'm making jello and drinking tea with honey in it. Thanks in advance for your help!

__________________________________________

Diagnosed with Celiac Disease 5/15/07

no other allergies that I know of

gluten free for about 6 months with occasional accidental glutenings


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



Celiac.com Sponsor (A8-M):



confused Community Regular

yes i have had it that bad, what i do sometimes is gbo on the brat diet, well minus the toast and it helps me feels somewhat better and lots of gatorade.

hope you feel better soon

paula

Emily Elizabeth Enthusiast

Thanks so much for posting this. I'm glad to hear that I'm not alone in this experience and I'm not dying! I'd never heard of the Brat diet before so I googled it. It definitely looks like a good plan. I just wish now that I knew what glutened me. It'd be worth it if I had a nice big slice of pizza for all this pain. :)

yes i have had it that bad, what i do sometimes is gbo on the brat diet, well minus the toast and it helps me feels somewhat better and lots of gatorade.

hope you feel better soon

paula

Lisa Mentor

Yes, the BRAT diet can help ease the symptoms, a little.

Banana, Rice, Apple Sauce and Tea.

Emily Elizabeth Enthusiast

Thanks for your help! I just tried eating rice in chicken bouillon so we'll see how that goes. It can only get better at this point I think!

Yes, the BRAT diet can help ease the symptoms, a little.

Banana, Rice, Apple Sauce and Tea.

buffettbride Enthusiast

If it helps any, my non-Celiac child has had awful poopies since last Friday. We call them the uberpoopies. Nothing solid has come out of that boy in almost a week.

I hope you get to feeling better soon.

Emily Elizabeth Enthusiast

It does help, thanks! It's nice to know that I'm not crazy over here. I really appreciate all of the responses. I called my doctor twice this morning and emailed yesterday and have not heard anything back. This board is such a comfort. I am so thankful to be able to have such a large and knowledgeable support group! Thank you very much!


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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular
I have been horribly sick for 32 hours now and am starting to wonder if this is a "normal" celiac related glutening or if I am sick with something else. It is like I have been taking the colonoscopy prep pills for 32 hours straight (seriously - no exaggeration). Has anyone else been glutened this badly? If so, do you have any advice on how to get through it? I'm scared to eat anything so I'm making jello and drinking tea with honey in it. Thanks in advance for your help!

__________________________________________

Diagnosed with Celiac Disease 5/15/07

no other allergies that I know of

gluten free for about 6 months with occasional accidental glutenings

I think you're fine, but ask yourself a couple questions. What ELSE feels wrong? Are you vomiting? Any funky rashes? I don't think jello will help, the brat idea is much better. Other than that, do you generally feel the way you did last time you got glutened?

Generic Apprentice

I used to ride it out, sometimes I would end up in the ER for dehydration, since I would have both ends going. I don't get that sick anymore since i went to acupuncture.

I suggest imodium (not the liquid kind, I think it has gluten in it). It will slow the D or completely stop it.

Emily Elizabeth Enthusiast

Those are good questions. I haven't felt this way since I was glutened only a few weeks after being diagnosed after eating out at PF Changs. I was up in the middle of the night a few times with D, but it didn't last nearly as long as this. Nothing else feels wrong really. I am only tired from being kept up all night with D from what I can tell. I do have a little bit of the ichy upper leg that I used to have, the foot cramping and the blood blister inside my mouth is back. Ohter than the jello, I have eaten rice with bouillon or with just water and salt and applesauce all day long. I do feel better. I haven't had to go in a long time so thats good. I'm hoping that I will actually sleep through the night tonight.

Thank goodness for this support group. My doctor/nurse never responded to the message I left. I go to Dr. Fasano in MD. Is this not something that GI doctor's help with? Should I have called my regular doctor first? Thanks!

I think you're fine, but ask yourself a couple questions. What ELSE feels wrong? Are you vomiting? Any funky rashes? I don't think jello will help, the brat idea is much better. Other than that, do you generally feel the way you did last time you got glutened?
JNBunnie1 Community Regular
Those are good questions. I haven't felt this way since I was glutened only a few weeks after being diagnosed after eating out at PF Changs. I was up in the middle of the night a few times with D, but it didn't last nearly as long as this. Nothing else feels wrong really. I am only tired from being kept up all night with D from what I can tell. I do have a little bit of the ichy upper leg that I used to have, the foot cramping and the blood blister inside my mouth is back. Ohter than the jello, I have eaten rice with bouillon or with just water and salt and applesauce all day long. I do feel better. I haven't had to go in a long time so thats good. I'm hoping that I will actually sleep through the night tonight.

Thank goodness for this support group. My doctor/nurse never responded to the message I left. I go to Dr. Fasano in MD. Is this not something that GI doctor's help with? Should I have called my regular doctor first? Thanks!

Oh, itchy leg foot cramps- that's a glutening! You don't get that stuff from a stomach bug.

Emily Elizabeth Enthusiast

I'm sure you're right. I really wish that I knew what caused it. I was on a cruise a couple weeks ago where I'm sure I was mildly glutened the whole time - stomach distention, multiple trips to the bathroom and irritability. I don't think I had ever really gotten over it and I certainly wasn't being super careful about cc and such like I used to be. I wonder if getting glutened slightly for a long period of time will cause a big reaction later? Like a breaking point or something? Anyway, I will now go back to being a crazy OCD person about gluten. I certainly learned my lesson!

Thanks again for your help. It means a lot to be able to talk with people who have gone through this.

Oh, itchy leg foot cramps- that's a glutening! You don't get that stuff from a stomach bug.
LilyCeliac Rookie

It really is the worst. Your not alone.

And I know how you feel about the non responsive Doctors. Even if they did respond they probably wouldn't have useful information. Thats been my experience.

I also have to rely on this forum for information cause its almost impossible to get it anywhere else.

The last time I felt really sick I was so nauseous and I took two gravol and it knocked me out and I slept like a baby and when i woke up I felt so much better! The Pharmacist told me gravol was gluten free so I'm hoping that was correct.

Also I agree with the Gatorade suggestion. That always seems to help me when I'm feeling sick and also when I have no appetite.

Emily Elizabeth Enthusiast

Yeah, you're right about the doctors. I called again yesterday to ask if I should call my regular doctor rather then them (GI doc) when I am having a problem since I didn't get a call back the day before. I was then put right in contact with the nurse. She was very nice and said she wasn't in the day before so that is why I didn't get a call. She did say that I could call either them or my regular doc when I'm having problems or have questions. You're right though, in the end, I really get the most information from this board as far as coping with symptoms and such. She didn't tell me anything that I hadn't read here. I'm so thankful for this board!

It really is the worst. Your not alone.

And I know how you feel about the non responsive Doctors. Even if they did respond they probably wouldn't have useful information. Thats been my experience.

I also have to rely on this forum for information cause its almost impossible to get it anywhere else.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    2. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    5. - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,084
    • Most Online (within 30 mins)
      7,748

    BlueIcyRose
    Newest Member
    BlueIcyRose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.