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

Rating How You Feel On A Scale Of 1 To 10

TracyB

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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

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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    4. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    5. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.