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

Am I The Only One Who Has Doubts?

StormyWen

Recommended Posts

StormyWen Rookie
StormyWen
Posted

Recently my sister-in-law (who is a physical therapist) mentioned that I might try going gluten free to see if it helped me with my joint pain/inflammation.  I was completely gluten free for 12 days and wasn't really sure if it helped with the joint pain but what I did notice was that I had more energy, no headaches, no nausea, no stomach aches and I stopped taking my prescription acid reflux pill for the last half of that time and didn't experience any symptoms.   

 

History:    My brother probably has celiac disease.  He has been gluten free for over 5 years.  If he ingests the tiniest amount of gluten by accident he gets severe joint pain, heart burn and is extremely sick.  He's mentioned to me many times that I should try going gluten free because of my GERD and migraine headaches.....but I never did.

        Almost every morning I wake up with stomach cramps or nausea.  I call this "my digestive system waking up".  I've always figured it was from an empty stomach or too much stomach acid.  I thought everyone felt this way.  I do experience extreme fatigue some days but I have always attributed that to "being a mom".  My GERD is because I'm overweight and I get migraines because they run in my family.  I have a reason for every single one of my celiac symptoms.....and it is possible that those are the reasons for them.

      

     When I was off gluten I was pretty sure I had a gluten problem, when I first went back on gluten so I could be accurately tested I was feeling yucky within 24 with heartburn and headache and actually had liquid diarrhea in my pants.  At that point I was sure I had a gluten problem.  Now I'm on day 6 of eating gluten and the symptoms are not as severe (I am taking my acid reflux prescription again) so now I'm starting to doubt there was a problem.  Maybe I'm just imagining that I don't feel good.  I just want to do the test and get it over with.  Anyone else ever doubt how lousy they are actually feeling?

    

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

I think we could fill a book with doubts.

And a second with things we thought were "normal".

Do what you need to do to figure out your health issues. Sounds like you're on the right track.

1desperateladysaved Proficient
1desperateladysaved
Posted

I keep trying to make my physicians tell me this really isn't happening to me.  Is that expressing enough doubt?  But 3 of them affirm that it is so.  I guess I need to stop doubting.

 

Maybe your body is too overwhelmed to keep sounding the alarm?  It sounds pretty clear to me that you have a gluten problem, Stormy.  You stay on board and figure it out.  Sorry, you are going through a challenge.  I hope you find definitive answers.

 

Diana

nvsmom Community Regular
nvsmom
Posted

I blew off my symptoms for my entire life after doctors told me that it was normal for me. They were wrong. Pain and discomfort is NOT normal. Try not to doubt yourself. You have definitely discovered that you have a gluten intolerance, now you just need to get blood tests to determine if it is celiac disease or the more common non-celiac gluten intolerance (NCGI).

Best wishes.

  • 2 weeks later...
NotMollyRingwald Apprentice
NotMollyRingwald
Posted

I go back and forth everyday...one minute thinking, "gluten is absolutely, without a doubt, 100%, poison to my system," and then an hour later, I'm thinking, "it's all in my head, I'm making things out worse than they are..." Blah blah blah blah blah. Ive always been a "innocent until proven guilty" kinda girl, so maybe this is my brain giving gluten the benefit of the doubt until I have more tests? Or maybe it's just good old fashioned denial. ;)

Hope you get answers soon!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I wasted 9 years 'mostly wheat free'. I had a hunch it might be gluten, but didn't research it or try the diet because it looked hard.

I still even get the odd stray thought maybe it's not gluten, despite a gluten challenge where I thought I might die, and a life totally transformed by being gluten-free.

All my doctors told me I was tired because I have young children. Except my current one, who tested me.

Gluten can affect the brain and moods too, so that may be affecting you. Does brain fog sound familiar?

The fact your brother is affected makes it more likely that you are too.

It's not so bad, honestly. My joints are way better now, and all kinds of symptoms have vanished.

Stick around and ask questions

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. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    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

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.