Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    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...

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites
eleep Enthusiast
eleep
Posted

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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:

Link to comment
Share on other sites
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 !

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
Chelle15 Apprentice
Chelle15
  • Author
Posted

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?).

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
Mayflowers Contributor
Mayflowers
Posted

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

Link to comment
Share on other sites
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! :)

Link to comment
Share on other sites
eKatherine Rookie
eKatherine
Posted

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

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Bad Reaction To Regular Ruffles Cheddar and Sour Cream

      By Tanner L · Posted

      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
×
×
  • Create New...