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

A Variety Of Symptoms. Can Anyone Relate?

RNEN80

Recommended Posts

RNEN80 Newbie
RNEN80
Posted

Hi everyone. I am new to the community and to going gluten free. I have not been diagnosed, but as a nurse, I find the weird symptoms over the years leading me to my own diagnoses. Symptoms include fatigue, throat congestion, eye twitching, alternating constipation/diarrhea, cluster headaches ( behind one eye), bloating, gas, nausea, joint and muscle pain and adult acne, easy bruising and panic attack and anxiety. I feel like I am going insane somedays when the anxiety and digestion gets too bad. I have had these for years, and some are getting worse. I went gluten free about 3 days ago and have already felt a difference digestion wise. Any feedback about your experience would be great. I feel so lost. Thank you.

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

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

Hi RNEN80,

Believe me, MANY here can relate to those symptoms!

...I feel so lost.

...

I bet there are loads of threads on this forum that can make you feel less lost in a hurry.

I think you're in the right place.

Good luck :)

~**caselynn**~ Enthusiast
~**caselynn**~
Posted

Hi everyone. I am new to the community and to going gluten free. I have not been diagnosed, but as a nurse, I find the weird symptoms over the years leading me to my own diagnoses. Symptoms include fatigue, throat congestion, eye twitching, alternating constipation/diarrhea, cluster headaches ( behind one eye), bloating, gas, nausea, joint and muscle pain and adult acne, easy bruising and panic attack and anxiety. I feel like I am going insane somedays when the anxiety and digestion gets too bad. I have had these for years, and some are getting worse. I went gluten free about 3 days ago and have already felt a difference digestion wise. Any feedback about your experience would be great. I feel so lost. Thank you.

Welcome!! I can relate to a lot of those symptoms, and to the medical worker aspect as well. I am a CT tech and found myself, the same as you, noticing the odd sequence of events. I'm very thankful for my GI doc who knew just what to do with me! I was a mess, lost is a good way to describe it. I wasn't sure of where to start, or how for that matter, luckily I came across this site. There's lots of great threads to check out and people to bounce questions off. I've been diagnosed and gluten-free for over a year now, and I feel so much better, it's awesome! Good luck to you!! :)

RNEN80 Newbie
RNEN80
Posted
  • Author

Thank you for your reply's! I have done a little researching on others symptoms and find myself relating to almost 95% of them. I always thought it was just because as someone in health care, you are more in tuned to symptoms and could have been overreacting. However, I don' t think I am. Too many weird symptoms; too long; too similar to celiacs. I am looking into the blood tests and or biopsy if necessary. In the mean time, going to stick to gluten free. Thank you again. I feel less lost.

bdw062590 Newbie
bdw062590
Posted

Our symptoms sound the same! You are not alone!

beachbirdie Contributor
beachbirdie
Posted

Thank you for your reply's! I have done a little researching on others symptoms and find myself relating to almost 95% of them. I always thought it was just because as someone in health care, you are more in tuned to symptoms and could have been overreacting. However, I don' t think I am. Too many weird symptoms; too long; too similar to celiacs. I am looking into the blood tests and or biopsy if necessary. In the mean time, going to stick to gluten free. Thank you again. I feel less lost.

If you are planning to seek testing, you must be eating gluten. Even a short time (a couple of weeks) gluten free can skew your blood tests. It's already too easy to get false negatives, you don't want to sabotage yourself! :)

Of course, the gluten-free trial can tell you a lot too. You may find you don't want to do testing if the diet has awesome results for you.

Welcome to the forum!

Lumi Newbie
Lumi
Posted

Hey just started a post that sounds the exact same, I feel lost too, just looking for some guidance, starting my diet today, hopefully we both start feeling better :D

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

Celiac.com Sponsor (A8-M):


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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    3. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    5. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
×
×
  • 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.