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

Extreme Pain And Bizzare Symptoms!


num1habsfan

Recommended Posts

Fiddle-Faddle Community Regular
I haven't eaten anything out of the ordinary, that's for sure. My diet mainly consists of breads and pastas.

~ Lisa ~

I'm assuming you mean gluten-free breads and pastas??

That would give ME terrible tummy pains! Now that my intestines have healed, I can eat occasional gluten-free bread and pasta, but not a lot, or else it feels like I've swallowed a brick, which then seems to turn into glue inside me.

Is it possible that, in addition to likely gall bladder problems, your diet is screwing up your body? I don't mean to be pointing fingers of blame at you, I'm sure you just didn't know better, but a diet of gluten-free bread and pasta is nearly as bad for you as a diet of gluteny bread and pasta! THe whole point is that all those starches turn to glue inside your body, and you need fruits and vegetables. I know you wrote in your sig that you react to most vegetables and that is certainly possible, but the reaction could also have been from an unhealed gut.

You might want to PM Ursa Major, who has successfully dealt with an ENORMOUS number of additional food intolerances, and find out what worked for her. I remember reading that she was able to tolerate some specific veggies if they were cooked enough.

Are you able to have brown rice? That at least has some fiber in it, though it seems to me that I read that brown rice pasta, for some reason, does not have nearly as much as plain brown rice.

Please let us know how you are doing!!!!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 93
  • Created
  • Last Reply
2kids4me Contributor
Oh gees, that would be the last thing I need. I wish I could just phone home and ask the doctor myself what to do!!! Because if I went to ER here it may be like last time that I don't get out til tomorrow and don't get to eat or drink anything and can't take my meds. Think that would be worse.....do these extreme random issues EVER stop happening? Man i hate being unhealthy.

If I go to a doc I know the first thing they'll accuse of and test for: being pregnant :angry:

~ Lisa ~

White stool usually indicates a liver /gallbladder problem as stated in prior post.

Dont get so upset about them wanting to do pregnancy test. Dont receive it as an accusation! Do you know how many young women come to ER saying - I can't possibly be pregnant.. but they are, and have suffered an ectopic pregnancy that is bleeding or perhaps rutured. This is medical emergency that the woman will die if not diagnosed.

They run to test to rule out a pregnancy because that is good medicine...not becasue they think you are pregnant or lying about anything.

I suffered severe abdominal pain a couple of years ago - turned out to be a ruptiured cyst on my ovary...they still did a pregnancy test [and I have had tubal ligation done].

Sandy

Now get that white poop checked out...

Link to comment
Share on other sites
num1habsfan Rising Star

OK guys, i'm definitely NOT feeling any better, in fact worse here, so I'm going to the office now in a few minutes.....this could be an interesting day. Send me lots of luck....

~ Lisa ~

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

Luck, good vibes, and prayers sent your way!!!!!!

Link to comment
Share on other sites
ravenwoodglass Mentor
Luck, good vibes, and prayers sent your way!!!!!!

Ditto Please let us know how your doing when you can.

Link to comment
Share on other sites
jerseyangel Proficient

Ack! I'm just seeing this now--hope it went ok and I'll be waiting to hear how you did.

Link to comment
Share on other sites
num1habsfan Rising Star

Finally home, got out of hospital 2:30 am....to exhausted, gonna have some tea and food then sleep. I'll post details tomorrow. All i'll say for now is the only relief I got is some tylenol and am still clueless to what the problem is. *cries*

~ Lisa ~

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

(((((((HUGS))))))))

I hope they figure this out soon. They hopefully at least did some blood work.

Link to comment
Share on other sites
Glutenfreefamily Enthusiast

Im sorry! Did they do an u/s on you?

Link to comment
Share on other sites
jerseyangel Proficient

Oh Lisa--I'm sorry :(

Link to comment
Share on other sites
Offthegrid Explorer

How awful! I'm thinking about you ...

Link to comment
Share on other sites
num1habsfan Rising Star

Here's the details:

1:30pm got to walk-in clinic. Only had to wait 30 mins to get in to see a doc. He felt my stomach and when he pressed on the side around gallbladder I said "that really hurts". He said I definitely am tender on the gallbladder. He then sent me to the lab which is in the same building for bloodwork and to give a urine sample. He said wait there for results. I came back to his office and he wanted to do an ECG on me because of the chest pains I talked about. Went back to his office and he said he's not quite sure what it is but to go to ER. Apparently something showed up in the urine. He asked me which hospital I live the closest to.

This is where the day goes from bad to worse: He called there to ask for a specific doc who could see me immediately because he didn't want me waiting, since he wanted more tests done and to see them ASAP. He gave me a copy of the bloodwork/urine samples and put it in an envelope with the docs name. WELL they said I couldn't. I sat there for 2 1/2 hours then told them AGAIN I'm supposed to see that certain guy and finally I got the answer to why I haven't been called in yet: they said I can't see anyone specifically because they are just a general doc and I have to wait just as everyone else. Next time I go home to Canora I'm going to the gov't office and reporting this. If I had things arranged to see someone IMMEDIATELY that means taking it seriously. Now I don

Link to comment
Share on other sites
JNBunnie1 Community Regular

I think you should inform the walk-in clinic doctor of how you were treated at the hospital and also, make him tell you what in your urinalysis made him send you to the ER in the firstplace. What tests do they have at the ER that the walk-in clinic doc didn't have?

Link to comment
Share on other sites
num1habsfan Rising Star
I think you should inform the walk-in clinic doctor of how you were treated at the hospital and also, make him tell you what in your urinalysis made him send you to the ER in the firstplace. What tests do they have at the ER that the walk-in clinic doc didn't have?

Yeah I'll tell him when I go take back a stool sample. He wanted me to have an ultrasound...and I was supposed to be put on IV too. It's what he told that guy I was supposed to see..

~ Lisa ~

Link to comment
Share on other sites
Darn210 Enthusiast

Yep, I would contact the walk-in doc. Maybe he can get ahold of your x-rays and bloodwork that were done yesterday and interpret them . . . he had something in mind when he sent you.

I'm sorry you didn't get your answers. I hope you will get them soon and get some relief!!!

Link to comment
Share on other sites
Ridgewalker Contributor

This is where the day goes from bad to worse: He called there to ask for a specific doc who could see me immediately because he didn't want me waiting, since he wanted more tests done and to see them ASAP. He gave me a copy of the bloodwork/urine samples and put it in an envelope with the docs name. WELL they said I couldn't. I sat there for 2 1/2 hours then told them AGAIN I'm supposed to see that certain guy and finally I got the answer to why I haven't been called in yet: they said I can't see anyone specifically because they are just a general doc and I have to wait just as everyone else. Next time I go home to Canora I'm going to the gov't office and reporting this. If I had things arranged to see someone IMMEDIATELY that means taking it seriously. Now I don

Link to comment
Share on other sites
Glutenfreefamily Enthusiast

That is crazy that they didnt do an u/s on you! Xray is not going to show if your gallbladder is acting up. I would call the walk in doc and tell them how you were treated and if they cannot get the testing done make an appointment with your primary dr to thoroughly get it checked out. I never got anywhere with the ER either.

Some insurances are a pain in the arse about gallbladder removal. If its your gallbladder you might need tests to show how much functioning you have left in it. Some insurances require it to be below a certain percent of function before they will take it out which is what I think Ridgewalker is talking about. I was very very lucky that my insurance didnt require it, even the nurse at the office was shocked. If it is your gallbladder you need to get these tests underway and set a baseline for function levels if they make you wait. Gluten causes gallbladder problems too so it might be damage throughout the years.

Please pursue this and dont let this setback stop you.

Link to comment
Share on other sites
Phyllis28 Apprentice

Lisa,

Definitely make sure the Dr. explains your test results. According to my doctor when the gallbladder is "sick" the liver and pancreatic enzymes can be elevated. That is why they suspected gallstones with me. I found some relief from a very low fat diet and using a heating pad where the pain was until I was able to have the gallbladder removed.

Also, if you are not feeling well enough to fight your way through the health care bueracracy (sp??) you might want to find someone (friend, teacher, school staff ect...) who can assist you, the kind of person who won't take "No" for an answer. It is tough enough just being sick.

Hope you get better very soon.

Link to comment
Share on other sites
elye Community Regular

(((((((HUGS)))))))))))))))))), Lisa!

I know you're Canadian, so you don't need to worry about insurance coverage, but this is a perfect example of how "univeral" health care just doesn't cut it anymore!

Keep fightin' like the amazing Roughrider fan I know you are! :):)

Link to comment
Share on other sites
newceliac Enthusiast

Some bloodwork and tests don't detect a gallbladder problem if you don't have gallstones.

Ask the doctors to do an ejection fraction test on your gallbladder. I had my gallbladder removed several years ago and the problem showed up on an ejection fraction. This test measures the pressure and frequency of bile injecting from through your gallbladder. If it is too low, it indicates a problem.

I did not have gallstones but when the removed the gallbladder, the lining was thick and velvety green.

Gallbladder problems can cause intense pain.

Hope you get to feeling better.

Link to comment
Share on other sites
num1habsfan Rising Star

Yeah once I get my stool sample I'll ask to see that same guy at the walk-in. I realized an easier way to file my complaint -- get that phone # for the Regina health region. Would be better than filing the complaint locally..

The doc in the walk-in is the one who said I was supposed to be on IV and get an ultra-sound so I hope there's a way I can get one of these done.

I forgot to mention that the doc at ER gave me the phone # to find a family doctor here in the city, so once I get back to having cell minutes in a few days I'll give it a call and find one.

Thanks everyone for your hugs and supports. I will continue to need you for the next few days...

~ Lisa ~

Link to comment
Share on other sites
ravenwoodglass Mentor

We are all here for you to the extent that we can be. It sounds like a real nightmare experience. I hope your pain is relieved soon. It does sound like it could be gallbladder or liver problems and the way you were treated was terrible. I would try to use a payphone or a freinds phone to get ahold of a doctor rather than waiting till I had minutes. If you can call without waiting please do so.

Link to comment
Share on other sites
num1habsfan Rising Star

Oh gees. Now i have my time of the month AGAIN even tho it just finished about 2 weeks ago. So now the stool sample will have to wait til its over, meaning so will my visit with the doctor have to wait :(

~ Lisa ~

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

If you have the name of the doc at the walk-in clinic, maybe you can send him a registered letter? Tell him everything that has happened since you left his office, and repeat what his instructions (IV and unltrasound) were and the fact that those things never happened. Send a registered copy to the hopsital where the ER was as well and keep a copy for yourself.

The fact that the letter is registered mail might motivate SOMEONE to do something for you. Sometimes just documenting things is enough to scare people into thinking a lawsuit is coming, and then they scramble to cover their tushes.

You have had such LOUSY medical care for so long. From now on, I suggest you keep copies of absolutely EVERYTHING. IF the walk-in clinic doc gives you a letter with recommendation for ultrasound and IV, make a copy of it or ask the receptionist to make a copy for your records.

Hope you feel better soon!

Link to comment
Share on other sites
num1habsfan Rising Star
If you have the name of the doc at the walk-in clinic, maybe you can send him a registered letter? Tell him everything that has happened since you left his office, and repeat what his instructions (IV and unltrasound) were and the fact that those things never happened. Send a registered copy to the hopsital where the ER was as well and keep a copy for yourself.

The fact that the letter is registered mail might motivate SOMEONE to do something for you. Sometimes just documenting things is enough to scare people into thinking a lawsuit is coming, and then they scramble to cover their tushes.

You have had such LOUSY medical care for so long. From now on, I suggest you keep copies of absolutely EVERYTHING. IF the walk-in clinic doc gives you a letter with recommendation for ultrasound and IV, make a copy of it or ask the receptionist to make a copy for your records.

Hope you feel better soon!

I'm not quite sure of his name :huh: I remember his last name, but I don't know the address or whatever. I'll hopefully be going back soon...I'm still so cranky from this, more than you can probably imagine. Today again I broke out in tears just from not being able to handle pains jabbing me in two places...

~ Lisa ~

Link to comment
Share on other sites

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. - Scott Adams commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      26

      Safe Gluten-Free Halloween Candy & Chocolate List

    2. - Sarah Grace replied to Sarah Grace's topic in Related Issues & Disorders
      7

      Sarah Grace

    3. - glucel replied to Sarah Grace's topic in Related Issues & Disorders
      7

      Sarah Grace

    4. - glucel replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      abnormal weight loss

    5. - knitty kitty replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      abnormal weight loss



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,077
    • Most Online (within 30 mins)
      7,748

    Graleymary24
    Newest Member
    Graleymary24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Sarah Grace
      Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post. Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present! I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂
    • glucel
      OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
    • glucel
      Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi may be healing and methyl helping although also eating potato chips every few days so that is probably helping too.  Taking 100 mg of b1 along with complex. I took all thiamine maybe 100 or so tablets. Brain fog diminished some and it seems swallowing trouble also diminished. Stopped taking it couple months or so ago and did not notice any reversals. I think I will finally look into bentofothiamine. Also eat 1/2 ounce liver every morning for additional v b support.                                  
    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
×
×
  • Create New...