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

Severe Intestinal Bleeding Warning Tmi

ravenwoodglass

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted

I haven't had a good glutening in a long time. I started getting ill at around 1 am night before last and within a couple of hours was passing startling amounts of blood and then started throwing up coffee grounds. This has happened before but never this bad. The bleeding D and vomitting finally stopped around 8 last night. I'm still real weak but feel better than I did.

I wasn't able to go to the ER, they think of me as a frequent flyer even though I have hardly been in there in the last 5 years. When this happened before I caught some of the blood, about a cup, and brought it in only to hear the doctor tell a nurse to throw the chiken blood out. Meanwhile I just layed there no tests, no meds, no care for over 5 hours then they told me to go home. I wasn't going to go through that again.

I will be calling my GI guy today at my DH insistence, and I know he's right. But I am terrified. I have no doubt about needing an upper and lower scoping but am afraid of what they might find.

I know I am grasping at straws here but does anyone else bleed badly when glutened? I'd feel much better if I knew this happened to others. Meanwhile I guess I will be on rice and applesauce for a few days. Like I need it I lost almost 7 pounds yesterday.

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted

Really, not so bad... but yes I get bleeding...just obviously not as bad as yours... hopefully that helps and you feel less like a freak :D

I know you had a much roughewr time pre-diag than me and stuff...Gosh I feel kinda selfish...sorta thinking glad its you not me...

Is that bad or is it just my "honest Aspie" side coming out???

Stop the coffee immediately though.... I would have thought or anything else thinning the blood!

<<<----CYBER HUGS---->>>

jerseyangel Proficient
jerseyangel
Posted

Ravenwood,

I haven't had the bleeding--just a little from the internal hemmorhoids.

I just want to say that I know you're scared, and I agree that you need to be seen by your doctor. It's always better to know what (if anything) you're dealing with.

I'll keep you in my thoughts, please keep in touch. :)

ravenwoodglass Mentor
ravenwoodglass
Posted
  • Author

Thanks guys. I called my GI guy and he is in 'surgery' today so I am waiting for a call back. I hope it's soon but am sure it will be today. Still pretty out of it and scared to eat anything but hopefully we'll have things figured out soon. Of course the biggest worry is the big C with my being misdiagnosed for so long but I believe I would bleed all the time if it was that. It is reasurring that it happens to others, hopefully you'll never have a day like I had though.

His office just called back and I am on my way in for scripts, blood work, stool samples and appointment.

gfp Enthusiast
gfp
Posted

I'm betting you just passed so much D it messed your insides up (like abrasion) but you should definately have it checked out...

I doubt your big worry is it... but it always pays to be safe! (Im no MD but the vomiting etc doesn't fit...) that said any internal bleeding is always best checked out...

What I'm trying to say is don't worry yourself into more D.... and vomiting... Get it checked out because its the right thing to do... and because its important your GI knows this but don't worry so much you give yourself extra D and a huge knot in your stomach...

This is much more conventional medicine than diagnosising celiac disease... I know you went through hell to be diagnosed but this is the bread and butter stuff of GI's...

ravenwoodglass Mentor
ravenwoodglass
Posted
  • Author
I'm betting you just passed so much D it messed your insides up (like abrasion) but you should definately have it checked out...

I doubt your big worry is it... but it always pays to be safe! (Im no MD but the vomiting etc doesn't fit...) that said any internal bleeding is always best checked out...

What I'm trying to say is don't worry yourself into more D.... and vomiting... Get it checked out because its the right thing to do... and because its important your GI knows this but don't worry so much you give yourself extra D and a huge knot in your stomach...

This is much more conventional medicine than diagnosising celiac disease... I know you went through hell to be diagnosed but this is the bread and butter stuff of GI's...

Thanks, yea I think this is going to be much easier for them to figure out. Oddly enough since my diagnosis I can be stressed as hell and not have my tummy act up, so much for the years of 'nervous stomach' diagnosis. My worry of course is C but my logical brain tells me it most likely has more to do with the diverticulosis. It could also have been food poisoning as my stomach stopped emptying the day before it started. I won't go into the particulars of how I know that but you have a good imagination. I am just glad the worst is over. I see the doc in a week and they drew lots of blood and sent me home with my little sample bottles to bring back so we'll see.

jerseyangel Proficient
jerseyangel
Posted

Ravenwood,

Glad they got you in so fast. I tend to think that because this was an isolated thing (as opposed to persistant bleeding over time), it's most likely not C but like you said, diverticulosis or some sort of erosive damage from the gluten and/or food poisoning.

I concur with the stress not causing stomach problems--that's how it works with me, too. All my life, people tried to label me the "sensitive" one. Yea, sensitive to gluten :D --not life!

I hope that you're feeling better soon--take good care, and I'll be anxious to hear about your appt. next week. :)

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

Celiac.com Sponsor (A8-M):


NicoleAJ Enthusiast
NicoleAJ
Posted

Good luck with all of your tests. I hope it goes well. I'm sure it's not a worst case scenario. I go through periods of severe rectal bleeding--to the point where I become anemic and sometimes all that comes out is blood. In the past, they attributed it to ulcerative colitis. But I was just hospitalized for a week in February, and after scoping me they said that I wasn't having an active outbreak and that I did not have internal hemorroids, so despite the fact that they found large amounts of blood in the samples, they have no idea what's causing it. I'm doing much better now, but I still have an occasional bloody day. I hope that they are able to come up with definitive answers for you and quick.

Archived

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

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


  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748
    Ozz lock
    Newest Member
    Ozz lock
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...