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

Endoscopy Thursday

TooManyHats

Recommended Posts

TooManyHats Rookie
TooManyHats
Posted

Hi everyone. After 2 1/2 months of D that I could not make stop, I finally went to the doctor who ran standard blood tests and stool cultures and ordered an ultrasound (suspecting my gallbladder). All were negative, so I was sent to the gastro who immediately asked me if I were of Irish decent. She suspects celiac and after poking my nose around here and other sites seems to make the most sense to me too. It certainly would explain years and years of digestion issues for me.

I've never had a test like this before and I must say I'm pretty nervous. Biopsies of your small intestines? That's gotta be unpleasant. I've been off gluten for 2 days (I know, I know--back on the bad stuff starting Saturday). I'd just like to know what to expect.

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

Celiac.com Sponsor (A8-M):


windee Rookie
windee
Posted

Hi everyone. After 2 1/2 months of D that I could not make stop, I finally went to the doctor who ran standard blood tests and stool cultures and ordered an ultrasound (suspecting my gallbladder). All were negative, so I was sent to the gastro who immediately asked me if I were of Irish decent. She suspects celiac and after poking my nose around here and other sites seems to make the most sense to me too. It certainly would explain years and years of digestion issues for me.

I've never had a test like this before and I must say I'm pretty nervous. Biopsies of your small intestines? That's gotta be unpleasant. I've been off gluten for 2 days (I know, I know--back on the bad stuff starting Saturday). I'd just like to know what to expect.

I asked to be put to sleep and they did. It was not bad at all.

luvs2eat Collaborator
luvs2eat
Posted

My Irish descent was a clue for my doctor too. Please don't be afraid of the endoscopy! It's absolutely the easiest test I've ever had. You'll lie down on a gurney w/ nice warm blankets. They'll put in an IV so they can give you the anesthesia thru it. They'll shoot some lovely sleep medicine in there and you'll wake up when it's over. You might have the tiniest bit of a sore throat from the tubing going down, but it's really nothing! You won't feel where they've taken biopsies of your small intestine and you'll might want to take a lovely nap when you get home. There's NO prep... just keep your diet light for a day or 2 before and eat nothing after the time they tell you.

TooManyHats Rookie
TooManyHats
Posted
  • Author

Of all the things the medical community can dream up to do to you, that doesn't sound terrible. Thank you for responding. I was anticipating feeling sore in the intestinal area. I must say I'm NOT looking forward to eating gluten again. I'm just sick and tired of being sick and tired.

I've got the best family in the world who have agreed to have the house be gluten free if this is positive. With 3 sons, there's too much chance for cc. I'm sure it wouldn't hurt my son, who has autism, to be gluten free. I've always shied away from this diet because it was such a large commitment and he showed no gastrointestinal issues (like so many of them do), but does have stained enamel on his teeth. Perhaps a clue? Only time will tell.

I forgot to ask, how long until I get results?

okieinalaska Apprentice
okieinalaska
Posted

Hi everyone. After 2 1/2 months of D that I could not make stop, I finally went to the doctor who ran standard blood tests and stool cultures and ordered an ultrasound (suspecting my gallbladder). All were negative, so I was sent to the gastro who immediately asked me if I were of Irish decent. She suspects celiac and after poking my nose around here and other sites seems to make the most sense to me too. It certainly would explain years and years of digestion issues for me.

Hi TooManyHats! Your story sounds like mine only I have to wait till end of January to get my endo. (and they didn't ask me about Irish although I am part) Let us know how it goes,

Best wishes,

Roda Rising Star
Roda
Posted

Make sure your doctor takes at least six samples from different areas in the small bowel. Damage can be patchy so multiple samples will help up the odds they get what they need.

amberlynn Contributor
amberlynn
Posted

I'm having an upper and lower endocopy on Wednesday, so we can feel nervous together! I've heard it isn't so bad, as everyone has stated - but I'm still nervous ;).

Mine is coming after years of issues, and I finally found someone to listen to me! A nurse practioner at a GI's office - and she thinks its possibly IBS, probably Celiac's and/or Crohn's. Yay...

Oddly enough, I'm VERY Irish. Like, 2/3rds Irish :0). Is this common among those with Irish descent?

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

Celiac.com Sponsor (A8-M):


TooManyHats Rookie
TooManyHats
Posted
  • Author

The lovely snowstorm we got here in the NE has postponed my colonoscopy, which was originally scheduled for tomorrow. Both will now be done on Thursday.

Could someone please tell me when I might expect to hear results on the endoscopy?

Either way I'm gluten-free starting Thursday. We're doing an overhaul of the kitchen next weekend. :rolleyes:

quakenbake Rookie
quakenbake
Posted

It sounds like we are in very similar situations- I have my endoscopy on Thursday too. I've been back on gluten after a 4 or 5 day hiatus for 2 weeks now, and it is miserable. In fact, I felt worse going back on gluten after being off for even a few days than I ever did just eating it solidly (that's finally starting to get better). However, if it means a good test result, then it'll be worth it in the end. I'm surprised you didn't have to start eating gluten sooner- I was going to have to wait until much later for my endoscopy had I not gotten back on the gluten right away. I only went off to see if that would help me get through finals and a wedding without being sick; it did. 4 or 5 days isn't enough time for any damage to heal, so that's why I'm still good for the test. I'm sure you'll do fine though, your doctor certainly knows a lot more than I do. I hope Thursday goes well for both of us- the sooner we get it over with the sooner we get to eat gluten free! I plan on celebrating with a big pan of gluten-free brownies

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. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    2. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    3. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    4. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
    5. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,300
    • Most Online (within 30 mins)
      7,748
    Philbin
    Newest Member
    Philbin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.