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

Chelle15

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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...

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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.

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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.

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    • trents
      Struggling to get into a good pattern

      By trents · Posted

      Are you taking any vitamin and mineral supplements to address the deficiencies and if so, are they gluten-free?
    • AnneBSunflower
      mystery gluten?

      By AnneBSunflower · Posted

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    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

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    • trents
      mystery gluten?

      By trents · Posted

      Welcome to the forum, @AnneBSunflower! Can you be more specific about the gluten antibodies? Which ones were found? Do you have access to the report and can you post the results? What is a "GI map"? How was this done? Is this a fecal matter test? Are you still consuming oats? Even "Gluten-free" oats? Have you checked all meds and supplements for possible gluten fillers or casings? Oral hygiene products? Are you sharing cooking facilities with wheat eaters?
    • AnneBSunflower
      mystery gluten?

      By AnneBSunflower · Posted

      Hi. I am looking for mystery gluten in my diet due to having a GI map done recently and the results found gluten antibodies. However, let me provide a bit of background. I was diagnosed with Hashimoto's 15 years ago. Ten years ago I consulted with a functional medicine doctor who put me on the AIP diet due to gastrointestinal distress. She did not diagnose me with celiac disease, but my thyroid antibodies skyrocketed when we reintroduced gluten after 6 months on the AIP diet. I have been maintaining a gluten free diet for 10 years. I have on again, off again gut issues, cannot lose weight, chronic vitamin deficiencies despite a diet focused on whole foods, and my thyroid numbers are whacky even with medication (my T3 is good, T4 chronically low, TSH low). My doctor diagnosed me this week as having celiac in addition to the Hashimoto's. Again, I have been eating gluten free for 10 years. My doctor says there is something I am eating that my body is reacting to that has gluten and I have inflammation in my gut. I don't buy anything that is processed without reading the label and it stating it is gluten free. I know things like soy sauce, salad dressing, potato chips (I haven't eaten a potato chip in probably 30 years), roasted nuts, lunch meat, etc. can have gluten. What else? Does Armour Thyroid have gluten? Kirkland Almond non-dairy beverage (doesn't say gluten free, but there are no ingredients that would indicate gluten)? Philadelphia Cream cheese plant-based cream cheese says it is gluten free but it contains maltodextrin, could this still be a source of gluten? If the plant-based cream cheese with maltodextrin could be a source of gluten, could anything labeled gluten free but containing maltodextrin still be a source of gluten?
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