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

Doctors, Celiac/gastroparesis....and Ibs Ugh!

Jaimepsalm63

By Jaimepsalm63
in Coping with Celiac Disease

Recommended Posts

Jaimepsalm63 Rookie
Jaimepsalm63
Posted

OK, first I'm going to apologize...this is a major whining moment for me, but I post it here because no one else understands or gets it including most doctors!

I have Celiac...that's a given on this forum. I have gastroparesis, bummer, but I'm learning not to eat my food and to drink most of it instead.

I'm so sick and tired of getting sick to the point of needing to be rehydrated in the ER and the doctor there telling me I have irritable bowel syndrome or stomach flu. It's getting old! My husband saw me at 1:30 in the morning listening to some no nothing doctor tell me that I had stomach flu, with me kindly saying it's been like this for 4 years, only to have him then tell me it must instead be IBS.

Can someone tell me why when we people who live with the problem like celiac and/or gastroparesis are given a blanket answer of IBS? Am I alone on this? I was diagnosed over 10 years ago with IBS only to have my new GI doctor say I didn't have it and was diagnosed with it because the other doctor didn't know what else to do and didn't want to hear me anymore. I was then given a new set of tests over 4 years ago and behold....CELIAC and then the gastroparesis over a year ago.

Jake, my husband, listened to me just cry on the way home telling him I'm tired of feeling sick all the time. I'm really tired of doctors telling me it's IBS. I'm tired of my friends looking at me saying I look fine, so what's the problem. I'm tired of waking up at all hours of the night and all hours of the day running to the toilet to throw up. I'm tired of being afraid of now leaving the house because I'm never sure if I'm going to throw up (I actually carry a bag next to me in the truck). I'm tired of this stupid thing not being on a schedule! It comes and goes....and it's not the lower end I have problems with....it's just keeping food down.

Ok, whining moment done.

Thank you for letting me whine and vent.

Jaime

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Oh, I do feel so sorry for you. You're right, there is no one else to tell except the good folks here on this forum how much you are suffering. No one else gets it! Thank goodness we have this place to let off steam and vent our frustrations. This IBS b*##^@*t has got to stop. There is no such thing!!! I "had" that diagnosis for more years than I can count, only it is NOT a diagnosis and someone should tell these doctors that.

Hope you find a real answer soon. :wub:

Jaimepsalm63 Rookie
Jaimepsalm63
Posted
  • Author

Thank you mushroom!

I already know what the problem is and know that nothing at this point is going to help me....except the drugs that cost $25 a pill after the insurance is applied and was told I could take it every 4 hours. So, with that costing so much (and it doesn't work anyway), guess how much I take because I have three boys to feed.

Just to have this forum is a blessing. I don't feel like a freak of nature or someone who's "seeking attention". (I've heard that one too when I was little and always complaining of stomach pains.) I had one doctor tell me it was all in my head.....I'm thankful (kind of) that I had to throw up at that point. He changed his mind and said he thought there might be a problem. Of course it was the usual IBS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I HATE that dx!!!!!!!!!!!!!!!!!!!!!!!!! Can you tell?

Ok, whining has turned into anger when mentioning those 3 letters put together.

Thank you again mushroom....I knew someone here would understand.

Jaime

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,627
    • Most Online (within 30 mins)
      7,748
    Tawnya Constable
    Newest Member
    Tawnya Constable
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
    • Scott Adams
      mystery gluten?

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  I didn't notice any gluten ingredients in Kirkland Almond non-dairy beverage, however it does contain Locust Bean Gum. Some gums may cause IBS-type issues in some people with celiac disease or gluten sensitivity:    
    • trents
      Struggling to get into a good pattern

      By trents · Posted

      Have you had B12 levels checked?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      For the past few months, I've been taking several supplements (a multi-vitamin, an iron supplement, a vitamin C supplement, and a magnesium supplement), all of which state that they are gluten free on the label.  
×
×
  • Create New...