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

Vent


leadmeastray88

Recommended Posts

leadmeastray88 Contributor

Sorry about the venting but I have nowhere else to go...

My surgeon decided to stool test me for parasites and (something else antibiotic related, can't remember what it's called) starting last Monday, the 9th, and see what the results for that are before sending me for scopes.

I had a rough week this week, lots of bad cramping and abdominal pain and fatigue and all that kept me going was telling myself "It's okay, you'll see him on Monday (the 23rd) and you'll find out what's next"

So the receptionist calls me yesterday and tells me they have to bump my appointment to July 7th because someone overbooked him. "He has to take care of emergencies first".

My beef with that is my test results will be in on the 23rd yet I have to sit back for another 2 weeks to wait.

I called back and asked if I could just go and see my regular doctor to get the reuslts so I could have some peace of mind. The answer was no.

I understand that surgeons have to deal with emergencies first, I guess I'm just frustrated that my constant abdominal pain and suffering isn't enough of an 'emergency' and they make me tough it out for another 2 weeks while the results are sitting on a computer screen waiting to be read.

Again, sorry for the vent. Just needed to tell somebody.

Kim


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Those stool tests doctors do for parasites test for very few of them and will overlook most. Meaning, that they are quite meaningless for the most part.

When I got really sick, I was tested for parasites, too. Everything was negative. When I eliminated gluten, the D that I had for six months straight without letting up went away the next day!

And I did a parasite cleanse on my own recently, and there must have been millions of parasites coming out over the course of the 30 days. So much for not having any parasites.

Go to the doctor's office in person, so they can't just ignore you, and DEMAND a photocopy of your results. Tell them you are very ill, and need to know what is going on and can't wait around for another two weeks.

Let us know what the test results say. If it looks like it all came back negative, ask to get your scope scheduled as soon as possible, even before you see him. It all sounds like arrogance to me, and I would not let them get away with it if I was you.

And as soon as you had the scope, without waiting for results, you should go on the gluten-free diet. Even if all your tests are negative, you can still have celiac disease, as they aren't all that reliable. Trying the diet is still the best test of them all.

leadmeastray88 Contributor
When I got really sick, I was tested for parasites, too. Everything was negative. When I eliminated gluten, the D that I had for six months straight without letting up went away the next day!

And I did a parasite cleanse on my own recently, and there must have been millions of parasites coming out over the course of the 30 days. So much for not having any parasites.

Wow, are you serious???

That is crazy...and here I thought I was going to get answers on Monday. I guess I shouldn't be too disappointed.

What did you use for your own personal cleanse?

TipTip Newbie

healing thoughts being sent your way leadmeastray!

i'm sorry you're in so much pain, i remember those days all too well.

i agree with Ursa Major, i would go in person and ask for your results if you really want them. they can not withhold the results of a medical test from you (if you're in the US)...

or, another idea is to call in as an emergency to your surgeon or to go to your primary care as an emergency appointment. i've done the latter many times (mainly because i don't like going to my GI) and she acts as an intermediary - but i have a good relationship with her, i don't know your situation.

what i would say more than anything is that you are the patient and if you're in pain, you have a right to seek help - don't talk yourself out of getting help if you need it.

leadmeastray88 Contributor
healing thoughts being sent your way leadmeastray!

i'm sorry you're in so much pain, i remember those days all too well.

i agree with Ursa Major, i would go in person and ask for your results if you really want them. they can not withhold the results of a medical test from you (if you're in the US)...

or, another idea is to call in as an emergency to your surgeon or to go to your primary care as an emergency appointment. i've done the latter many times (mainly because i don't like going to my GI) and she acts as an intermediary - but i have a good relationship with her, i don't know your situation.

Thanks very much :)

I think I will go in and ask for my test results. You're right, they can't deny me that right.

I don't think calling in to my surgeon as an emergency is an option - as my reasoning is not considered an 'emergency' by their standards. That is why my appointment got bumped. He has been a very good surgeon to me - I don't want to ruin our good relationship. He's the one who cured my hernia problem.

My primary care physician won't give me my results - I called her this morning and she said that I have to get them from my surgeon because he's the one who ordered the tests. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,040
    • Most Online (within 30 mins)
      7,748

    Charity White
    Newest Member
    Charity White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
×
×
  • Create New...