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 Our Content
    eNewsletter
    Donate

Rating How You Feel On A Scale Of 1 To 10


TracyB

Recommended Posts

TracyB Apprentice

I was talking to my DH last night regarding the possibility of celiac. He has told me many times that I ought to get checked and he can't for the life of him understand why I haven't/won't.

The only way I could explain it to him is this:

I was hospitalized at age 3 with extreme abdominal pain - they didn't find the cause and so diagnosed "nervous stomach" (IBS).

So I've lived with how I feel basically all my life - so to me, this means that my scale of discomfort is MINE and can't really be compared to anybody else - I don't KNOW how anybody else feels. I've just plugged along all my life (literally) not ever really feeling good but not knowing how one is SUPPOSED to feel. Does that make sense? So my scale of discomfort might be a 5 most times, but to somebody else, if they had to feel the way I do, might scream a 10.

So the reason I haven't actively pursued this with a doctor (I think) is because this is MY NORM and I can't really compare it to anything or anyone else. BUT, every once in a while I get fed up and this is usually when the D gets so bad, is daily for several weeks and I feel so awful that even I have to sit up and notice that it's probably not normal.

Problem is, I eventually go back to "normal" and then I don't think about getting tested until the next round of severe D.

Now that it's about my son and not just me, the Mommy Bear is coming out and I'm more determined than ever to find out what the heck is going on.

I'll call to make an appt. with my doctor today - but I can tell you I am anxious about it. What if I get complete rejection, even scorn? Should I arm myself with information - esp. about not being skinny and the possibility of celiac? Are there accredited medical articles that I could arm myself with before seeing her?

Thanks for listening again,

TracyB


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Tracy....I know exactly how you feel. From my first time having intercourse it hurt. But I thought that was normal. Then it continued to hurt EVERY TIME for 3 years. It was all I knew and I thought it was "normal". In those 3 years I never saw a doctor because even though I felt pain with it, it wasnt so bad to stop me and I thought it was how every woman felt. Till I said to a friend one day what a pain in the butt sex was. And how it hurt and I didnt see why anyone wanted to do it. Well she actually ENJOYED doing it and told me something was terribly wrong. So I finally went to a doctor. I was scared for sure. But turned out that I had abdominal adhesions from an appendectomy surgery many years before. They went in and cleaned everything up in there. I can still remember how good it felt after that procedure. Hey this DOES feel good. :)

So even though you do not know what you are missing, it is still worth trying. It might jut be the best thing that has every happened to you.

missy'smom Collaborator

I felt much like you do. I would bring things uo to a doctor every once in a while and be dismissed. I thought that what I felt was "normal" for a new mom, or a woman with 2 jobs, etc. I would see women on TV who cleaned their house everyday and think how on earth could they do that? But now I could if I wanted to. I also thought at some point that this is just how I would feel the rest of my life, that I was just not someone who could...(fill in the blank) or just not someone with a strong constitution or just not destined to have a happy, healthy fulfilling life etc..

My sister went through hell with doctors and seizures and by the time I was getting better and trying to convince her to get tested, she sounded alot like you. Take it one step at a time. Come back and report back here and we'll hold your hand if you need to.

If you have celiac disease and get treated(gluten-free diet) it may be a life changing experience. I feel that I have gotten a second chance at life. My sister is seizure free.

Make sure you continue to consume gluten if you are going to get tested. It is worth it for some. For various reasons, I encouraged my sister to get tested, even though I haven't been. If all else fails though, a dietary trial may be diagnosis enough, it was for me. Contact a local celiac disease support group if there is one. If you need help finding one ask us. I found one for my sister in another state, through this forum. Ask the support group for recommendations for a doctor who is knowledgeable about celiac disease.

I wasn't able to articulate to the doctors how I felt and didn't realize that some of the things I was experiencing were symptoms. The Celiac Sprue Association website has a checklist of symptoms. You may want to print it out and check them off to show the doctor. Open Original Shared Link

TracyB Apprentice
Tracy....I know exactly how you feel. From my first time having intercourse it hurt. But I thought that was normal. Then it continued to hurt EVERY TIME for 3 years. It was all I knew and I thought it was "normal". In those 3 years I never saw a doctor because even though I felt pain with it, it wasnt so bad to stop me and I thought it was how every woman felt. Till I said to a friend one day what a pain in the butt sex was. And how it hurt and I didnt see why anyone wanted to do it. Well she actually ENJOYED doing it and told me something was terribly wrong. So I finally went to a doctor. I was scared for sure. But turned out that I had abdominal adhesions from an appendectomy surgery many years before. They went in and cleaned everything up in there. I can still remember how good it felt after that procedure. Hey this DOES feel good. :)

So even though you do not know what you are missing, it is still worth trying. It might jut be the best thing that has every happened to you.

Shay and Missy's Mom - thanks for your replies. I will make a call this afternoon to my doctor. I did find some reputable sites for medical documentation so I'll print those out to show her should I meet with any opposition. She is an excellent doctor and has never poo-poo'ed me before - but I do have this faint memory of a past conversation with her about Celiac and I THINK she may have said something like " you don't fit the normal criteria for celiac" or something like that. I'm not sure if it even was her that said that - I don't go to the Dr.often at all - ALWAYS behind with paps, etc. and get calls to book in....

It's good to know that others know what I mean about rating discomfort/pain - the medical profession are always asking you to gauge things on a scale of 1-10 and sometimes it doesn't make sense!

Thanks again,

TracyB

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Suze046 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Reintroduction of Gluten

    2. - oyea replied to Lions31's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      33

      Neuropathy still after 4 months gluten-free.. help

    3. - barb simkin posted a topic in Related Issues & Disorders
      0

      celiac, chocolate and alcohol

    4. - dixonpete commented on dixonpete's blog entry in Pete Dixon
      3

      Hookwormed status report

    5. - Jmartes71 replied to numike's topic in Food Intolerance & Leaky Gut
      9

      is my celiac disease gone?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,311
    • Most Online (within 30 mins)
      7,748

    James Forkovitch
    Newest Member
    James Forkovitch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Suze046
      Hi, so just to put you in the picture, I’ve had lots of digestive issues over the past 6 months, diarrhoea, constipation, gut ache, cramps, head aches, lost 2 stone in weight am perimenopausal.. need I go on. I know some of this is caused by stress and I’ve always had to watch what I eat so noting too processed of fatty and rich. I’ve had blood tests, stool tests gall bladder scan, repeated tests and nothing showed up (which is good) I tested negative for celiac back in March. I’ve just done 6 weeks gluten free and I have to say things got better. My doctor told me to reintroduce it so I did this 9 days ago but gently and I’m still keeping some gluten out of my diet. My question is how long can it take for a reaction because my diarrhoea constipation and cramps are back but only in the last 4 days and it started with a slight unsettling tum feeling first like it might kick off but not sure. So I’m wondering if this is just a coincidence or if it can take your body that long to react? Anyone else been through this? Advice needed! 
    • oyea
      I was not diagnosed with celiac disease, but am gluten-intolerant. I have been gluten free for almost 10 years. In April of this year (2025), I got a steroid shot. I have been able to eat sourdough bread before with no problems. After the steroid shot, I developed gluten-neuropathy, and I could no longer eat sourdough bread, and now the neuropathy returns with small amounts of gluten.  I also get POTS (Postural Orthostatic Tachycardia Syndrome) when I eat gluten. My heart beats so fast in the middle of the night I can't sleep. I'm usually up for hours. 
    • barb simkin
      Anyone bothered  by chocolate and alcohol.  Found I cant drink  alcohol or eat chocolate  Anyone else
    • Jmartes71
      This is my current exhausting battle with the medical field. As Ive mentioned in past I was diagnosed in 1994 by colonoscopy and endoscopy and was told i was celiac and to stay away from wheat and Ill be just fine.NOPE not at all in fact im worse thanks to being disregarded and my new word that was given that fits perfectly medically gaslight for over 30 years.I was not informed by anyone about the condition other than its a food allergy. Long story short if it wasn't for this website.I would be so much worse. I have been glutenfree since 1994 and was diagnosed with many other foods in 2007. I have stayed away from those items, except dairy sometimes I'll cheat when I know I'll be home a few days.My work history is horrible thanks to my digestive issues. I had my past primary for 25 years and everything im going through, he danced around celiac disease. My last day of employment was March 08, 2023 I was a bus driver and took pride in that.I get sick easily and when covid hit me and I stopped taking tramadel to push to give my bloated body a break, I haven't " bounced " back.Though not that well before but worse now.I applied for disability because yet again I was fired solely on health, which by the way seems to be legal because no lawyer wants to help.I was denied and my primary stated let me fluff it up a bit.FLUFF IT UP A BIT?He has been my doctor for 25 years! All that Im going through was basically ignored and not put together. I switched primary doctor and seeing new gi and its EXTREMELY EXHAUSTING because they are staying all my test came back clean, good, its normal. Except THANKYOU LORD JESUS HLA DQ2 is positive that Itty bitty tiny little test of positive FINALLY VALIDATION RIGHT.No, Im still struggling and fighting its not fair
    • Joel K
      Since medical insurance is not affected directly by celiac disease on an ongoing basis (i.e. medication, medical devices, daily monitoring, home care nursing, etc), I rather doubt anyone would be denied a policy for having it as a pre-existing condition. I’ve certainly never been and I have two pre-existing conditions that are managed with diet alone and both are long-well-known by my doctors and via medical testing and procedures. Insurance is all about risk management, not health. 
×
×
  • Create New...