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Rating How You Feel On A Scale Of 1 To 10

TracyB

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TracyB Apprentice
TracyB
Posted

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

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ShayFL Enthusiast
ShayFL
Posted

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
missy'smom
Posted

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
TracyB
Posted
  • Author
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

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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