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

New Here...and Nervous


Brit

Recommended Posts

Brit Rookie

OK so I am new on here and to start off my name is Brittany. I have my endoscopy on August 1st and I am really nervous. My brother had one and he said it wasn't bad but then I talked to my friends and they all said that it hurt a lot and they like couldnt eat at all. So I was just wanting some feedback on what its like! :D

Other stuff is I haven't had any symptoms so far but on Sunday I was really sick and I tried throwing up and that didn't work. The pain was so bad I couldn't find any posistion that was comfortable. Like it hurt to stand up, sit down, and lay down. Has anyone ever had symptoms like that before? Is joint pain a symptom for celiac disease?

I also have a rash on my stomach and not sure if it is DH. Does anyone have DH? If they do what does it look like? The doctors say it is an allergy to nickel but I haven't been wearing any jeans or anything that has metal on it and it is getting worse and they doctors keep telling me that it is an allergy to nickel and I don't believe them. Does anyone have DH??


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



Celiac.com Sponsor (A8-M):



skoki-mom Explorer
OK so I am new on here and to start off my name is Brittany. I have my endoscopy on August 1st and I am really nervous. My brother had one and he said it wasn't bad but then I talked to my friends and they all said that it hurt a lot and they like couldnt eat at all. So I was just wanting some feedback on what its like! :D

Other stuff is I haven't had any symptoms so far but on Sunday I was really sick and I tried throwing up and that didn't work. The pain was so bad I couldn't find any posistion that was comfortable. Like it hurt to stand up, sit down, and lay down. Has anyone ever had symptoms like that before? Is joint pain a symptom for celiac disease?

I also have a rash on my stomach and not sure if it is DH. Does anyone have DH? If they do what does it look like? The doctors say it is an allergy to nickel but I haven't been wearing any jeans or anything that has metal on it and it is getting worse and they doctors keep telling me that it is an allergy to nickel and I don't believe them. Does anyone have DH??

Hello Brittany,

Welcome. I can't comment on your symptoms because I'm an asymptomatic person, never been sick a day in my life (at least not with celiac disease). However, I have undergone 2 endoscopes. The first was a breeze. I had Fentany, Midazolam, and hurricane spray. The second sort of sucked. They were running late so I let a different dr from my own do it instead. I let them talk me out of hurricane spray on the guise they would use "more sedation". I could feel the scope poking me on the way down, it was pretty nasty. When I woke up I read my chart (I'm a nurse) and all they used was Midazolam, which has no analgesic properties, it's purely a sedative. I was pissed. Anyhow, even at that, it wasn't *horrible*, but if I have to do another one, I will be telling them to give me the freaking Fentanyl this time!! Just make sure you are getting analgesia PLUS sedation and you should be ok.

Rikki Tikki Explorer

Welcome to the boards Brittany. I don't have DH so I am afraid I can't answer your questions about that. I am thinking that if you have a positive blood test, it's also possible you don't have the damage to your villi when they do the biopsy, so it could still be that you have it. Maybe someone else can help out here.

Also, the endscopy (biopsy) does not hurt at all, they knock you out for it, and I was not sore at all afterwards.

Anyway, welcome!

Lymetoo Contributor

I had one 30 yrs ago with NO MEDS at all. I'm not kidding! It wasn't THAT bad....but 3 yrs ago I had one WITH meds and it was breeze....don't remember a thing....no soreness or anything.

Good luck and welcome!! :)

elye Community Regular

Yep, ditto with the no-problem endoscope for me. The spray freezes the back of your throat, which feels unusual but certainly not painful, and there is absolutely no pain during the process. I was given the option of sedation, and I said, "yeah, but just enough that I'm really relaxed". It was fine!

dlp252 Apprentice

I've had three endoscopes since April and didn't feel anything on any of them except for a slight sore throat afterwards...I mean slight too. I can't remember a single thing about any of the three procedures except being wheeled into the room and then waking up in the recovery area. The worst part of the whole thing for me was the needle prick for the IV...and that was just a needle prick. The first scope I was sedated heavily because they also did a colonoscopy at the same time; it took a long time for me to come out of it, but the last two (endoscopes only) I came out quickly (according to my mother who has had the pleasure of being there with me all three times, lol).

Where is the pain you feel? I had pain in my knees for several months which improved a LOT after going gluten free...I now only ocassionally have a pain in the knee, whereas before going gluten/dairy free I had it every day. I get a pain in my abdomen from time to time which is excruiating where no position helps. My doctor couldn't find anything during the colonoscopy so determined I have IBS, lol.

Brit Rookie

Yeah! Thanks everybody for your responses it has helped a lot! But I have pains in my knees constantly! And I am big on extreme water sports so that doesn't help at all! But I do get pain in my abdomen from time to time also and there really is no posistion! I'll ask my doctor about IBS! Thanks everybody...gotta run and go babysit!


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



Celiac.com Sponsor (A8-M):



Guest Robbin

Britany, joint pain is very common. Many of us on here suffer from it. I get worse when glutened. Take care that you stay gluten-free so it doesn't turn into fibromyalgia. I firmly believe it is caused by long term undiagnosed celiac. I also had the rash, it was itchy as all get out. My dr. said it was an allergy too. WRONG!! There are a lot of informative rash threads on the dh site. I know a lot of people get rashes that don't seem to be dh, but are related to gluten. It went totally away when I was gluten free for about a month and a half. You will notice a difference once you are gluten free for awhile.

kabowman Explorer

I have had 2 and made sure I told the nurse and the doc that I wanted to be put out - no problems, afterwards, of course I was starved and went home to EAT. No problem.

I also have problems with sore joints when my food gets off - not nearly so bad now though.

taz sharratt Enthusiast
OK so I am new on here and to start off my name is Brittany. I have my endoscopy on August 1st and I am really nervous. My brother had one and he said it wasn't bad but then I talked to my friends and they all said that it hurt a lot and they like couldnt eat at all. So I was just wanting some feedback on what its like! :D

Other stuff is I haven't had any symptoms so far but on Sunday I was really sick and I tried throwing up and that didn't work. The pain was so bad I couldn't find any posistion that was comfortable. Like it hurt to stand up, sit down, and lay down. Has anyone ever had symptoms like that before? Is joint pain a symptom for celiac disease?

I also have a rash on my stomach and not sure if it is DH. Does anyone have DH? If they do what does it look like? The doctors say it is an allergy to nickel but I haven't been wearing any jeans or anything that has metal on it and it is getting worse and they doctors keep telling me that it is an allergy to nickel and I don't believe them. Does anyone have DH??

hey brittany, welcome, i have my endoscopy on the 1st august as well, im nervouse too. the way i look at it is thateveryone has different pain levels ( ok, mine is zero- im a baby) and you may have a hight threshhold for pain a lot more than others you know who have has the procedure done. i have a friend who said it was just uncomfortable so im going with that, i dont wanna think too much about it as i think you can make yourself ill over worrying about it. you will deff find lots of info on this sitthat will help with all your ?s. good luch for 1st august.

Sierra Newbie

I had my endoscopy just last week (July 25). I was very nervous going into it, but really, it was a breeze. Mine was scheduled for 4pm, so my last meal was breakfast before 8am, then only clear fluids until noon, then nothing at all after that. I was mostly hungry leading up to the endoscopy, but also nervous. It didn't help that my doc was over an hour late, so it didn't even start until about 5:20 when I got taken into the room and they started giving me some meds. They gave me 3 shots into my IV. I don't know what they were, but i know was was to kill pain and one was to relax me. They also said they did the spray in my throat, but frankly I don't remember that. I don't remember anything after they said they were putting in the third shot. :) I woke up later in the recovery room. I was wheeled out to the car by 6:30pm, so at the most I was out of it for about an hour. Went home and ate and watched a movie and ate popcorn. Felt fine - nothing at all. The next morning I had a slightly sore throat but that was basically gone by about 1:00pm. Oh, and the only info I got from the doctor immediately after the endoscopy was that I had "mild scalloping" of my intestine. I have my real follow-up appointment next week so I expect to get real info then when he'll have the biopsy info.

FYI, I went gluten-free the day after my endoscopy and I feel so much better now! It's only been a week, but it's made a difference.

Sierra in Tigard OR

Rachel--24 Collaborator

Hi Britanny,

Welcome to the board! :)

Just an echo of whats already been posted...the endoscopy was a breeze for me. Totally dont remember any of it....it felt like a really great nap. Nothing painful about it whatsoever. Some people do get a sore throat afterwards but I didnt experience that. I was just a little "loopy" from the drugs....talking alot and making no sense. :rolleyes:

I'm betting the rash, whether its DH or not, will go away once you're off gluten. Also the joint pain ( a very common symptom) should improve as well. Good luck to you!! Dont worry about the Endoscopy...it really is a piece of cake. ;)

Archived

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

  • 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. - Borky posted a topic in Dermatitis Herpetiformis
      0

      Gluten food test strips

    2. - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    3. - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,268
    • Most Online (within 30 mins)
      7,748

    Cookie Monster13
    Newest Member
    Cookie Monster13
    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

    • Borky
      I just recently saw something on this.  Has anyone tried test strips?  Which brand is better?  Not sure how they really work and if they really do work.  Thank you, Nancy (aka Borky)
    • Wheatwacked
    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
×
×
  • 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.