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

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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,995
    • Most Online (within 30 mins)
      7,748

    Naner4
    Newest Member
    Naner4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • 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.