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

I'm Fine, Then I Am Not...

Chelle15

Recommended Posts

Chelle15 Apprentice
Chelle15
Posted

I had positive blood tests and am getting a biospy soon. In the meantime, I keep going through this cycle of feeling fine and having energy, etc. then suddenly I feel ill. Like I have the flu and everything feels crappy. Anyone else have these back and forth episodes? And, for some reason, my jaw is killing me. Maybe stress from worrying about all this. Thanks for any input, all of you have been very helpful...

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

After my gluten challenge last year I had a really hard time getting back my energy. I would feel great for a few hours, and then it would hit me like a truck and I'd have to take a nap otherwise I'd feel flu-like for the rest of the day. It went away after a few weeks, but it was pretty bad while it lasted. I feel for ya. Hope you're feeling better soon. You may want to try supplementing your diet for a while and see if that helps. I take Gummy Vites (oh so good). I've found that I have much more energy now that I'm supplementing.

ravenwoodglass Mentor
ravenwoodglass
Posted
I had positive blood tests and am getting a biospy soon. In the meantime, I keep going through this cycle of feeling fine and having energy, etc. then suddenly I feel ill. Like I have the flu and everything feels crappy. Anyone else have these back and forth episodes? And, for some reason, my jaw is killing me. Maybe stress from worrying about all this. Thanks for any input, all of you have been very helpful...

My problems GI wise were intermittant for years. That was one reason why they thought IBS. I always had a rumbly tummy and gas but would only get D about every 3 or four days. The D would clean out my system and then the intolerance progression would begin again. I felt great after my colonoscopy also for about 3 days. The doctor thought I was nuts cause I asked him if I could use the Golightly once a week. :huh::blink:<_< He still didn't check for celiac though. Unfortunately after about 5 years of intermittant it became a daily just in the morning thing, then an all day and finally included nightly 2-3 hour bouts with pain so bad I felt I would pass out. If you had positive bloodwork I am praying you will go gluten free even if the biopsies are negative. I would not wish my life on anyone prediagnosis.

Kaycee Collaborator
Kaycee
Posted

About the time of my diagnosis, I had terrible jaw pain. It might have been strees, but I went to the doctor (about the same time as when I enquired about being gluten intolerant). He thought it could've been my teeth or the jaw. He guessed it was the jaw and that it could take a while to disappear, and prescribed panadol. And I think I had it for about 2 months. It was my jaw.

I was diagnosed coeliac through a blood test. I am still waiting for a biopsy. My doctor said if the biopsy came back negative to coeliac he would not take any notice of that, as I have coeliac and that is that. So I guess if the blood work is positive that is as good enough a diagnosis as any. I will never go back to eating gluten, as I feel so much better. But like you I have had good days and bad days, and I am sure I have other issues apart from gluten, and I am working my way through other intolerances.

Hope you are feeling better

Cathy

eleep Enthusiast
eleep
Posted

I clench my jaw when I'm glutened -- TMJ and nighttime teeth grinding seem to be celiac glutening symptoms.

jerseyangel Proficient
jerseyangel
Posted
I clench my jaw when I'm glutened -- TMJ and nighttime teeth grinding seem to be celiac glutening symptoms.

I get this symptom, too. I wear a night guard to bed because I clench so hard I cause myself head/neck aches.

ravenwoodglass Mentor
ravenwoodglass
Posted
I clench my jaw when I'm glutened -- TMJ and nighttime teeth grinding seem to be celiac glutening symptoms.

Me too, I have broken teeth grinding them at night and the noise drove my hubby batty. For me this resolved soon after being gluten-free.

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

Celiac.com Sponsor (A8-M):


Mayflowers Contributor
Mayflowers
Posted

I'm a grinder too. I mean I was one. I've been doing it less since I got older and now for some reason I sleep with my mouth open instead of clench. :huh:

Aerin328 Apprentice
Aerin328
Posted
In the meantime, I keep going through this cycle of feeling fine and having energy, etc. then suddenly I feel ill. Like I have the flu and everything feels crappy. Anyone else have these back and forth episodes?

Yes, I've been experiencing this too. I just went Gluten-free a few weeks ago (after being very sick for 3 months) and only now am I starting to have times here and there where I feel more normal than not, and have energy. More often I feel flu-like sickness and "crappy all over." It alternates back and forth. Healing can take a long time, so I am just trying to be patient.

In the meantime I agree with the above poster who said even if the biopsy is negative you should still go gluten-free. Positive bloodwork is enough. Gluten-free for a lengthy period of time should slowly relieve the flu-like symptoms you are experiencing. Antibodies to the gluten should be absent from the blood within about a year, but general consensus seems to be initial primary relief within 2-6 months of being gluten-free.

Good luck and God bless !

Kirian Rookie
Kirian
Posted
I clench my jaw when I'm glutened -- TMJ and nighttime teeth grinding seem to be celiac glutening symptoms.

Very interesting. I have TMJ! Who knew this could be a symptom too. Boy - will I ever be glad when that goes away/improves!

Chelle15 Apprentice
Chelle15
Posted
  • Author

Thank you, all of you! I just can't wait to get a grip on all of this. I have an appt. with the GI on Wednesday and I am hoping I can get my bearings(sp?).

Mayflowers Contributor
Mayflowers
Posted

I bought a Tempurpedic pillow and within a week my TMJ was gone. The pillow relievd the pressure and allowed it to heal. I was amazed as I bought the pillow for my neck pain. It's still gone by the way.

CarlaB Enthusiast
CarlaB
Posted

I have TMJ, too. Mine is because my teeth align poorly and it stresses my jaw. It gets worse, however, when I grind, which I have never connected to gluten as I don't know when I'm doing it. TMJ treatment is covered by medical, not dental, insurance, so I'm getting mine fixed, I'm through the splint stage, which moved my jaw, now I'll be getting braces so that my teeth align properly. It's been worth it, but mine was really bad. My TMJ joint was actually worn down noticeably on the x-ray -- it was flat instead of round.

For some people, the night guard is enough if the jaw pain is from the grinding.

Some days are better than others as far as healing goes.

Mayflowers Contributor
Mayflowers
Posted

I recommend the pillow. If you sleep on your side, it will really help relieve the soreness.

Kirian Rookie
Kirian
Posted

Thanks for the recomendation. I will have to look into one of those. Aren't they expensive? Yes, I am sure they are more than worth it thought! :)

eKatherine Apprentice
eKatherine
Posted

How odd. My jaw pain is almost completely relieved in about the same period of time since I've given up gluten.

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      I take both Benfotiamine and TTFD. You might want to start with the Benfotiamine for a few days and then add in the TTFD. You can look for NeuroMag (Magnesium Threonate). A magnesium glycinate is fine, too. Doctor's Best is a good brand. Don't take more than 300mg total per day of magnesium or it may have a laxative effect. Be sure...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for...
    3. Oliverg
      - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar. 2 hours later I was throwing up violently on my hands and knees over the loo. .horrendous stomach pains, My hair was wet fro...
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      Yes, do take your B Complex with Benfotiamine or Thiamax. Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day. Taking them too close to bedtime can keep you too energetic to go to sleep. The Life Extension Benfotiamine with Thiamine is Benfotiamine and...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,769
    • Most Online (within 30 mins)
      7,748
    Rayster
    Newest Member
    Rayster
    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
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take both Benfotiamine and TTFD.   You might want to start with the Benfotiamine for a few days and then add in the TTFD.   You can look for NeuroMag (Magnesium Threonate).  A magnesium glycinate is fine, too.  Doctor's Best is a good brand.  Don't take more than 300mg total per day of magnesium or it may have a laxative effect.   Be sure to take the B Complex.  The Benfotiamine and TTFD will need the other B vitamins.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for men and doesn't have BHT which has shown to cause liver cancer in animals. I was never big with multivitamins as well as doctors I just read when I was first going gluten free to take a multi but I think I will stop them and work on trying the super B Thia and Ben, Mag.  
    • Oliverg
      Glutened

      By Oliverg · Posted

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
×
×
  • 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.