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

Celiac3270's Endo

ryebaby0

By ryebaby0
in Coping with Celiac Disease

Recommended Posts

GEF Explorer
GEF
Posted

Good luck, celiac3270! I hope so much that you get some answers to your continued symptoms.

I'll be thinking about you!

Gretchen

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

Good luck, celiac3270 and Stacie. I will be praying for both of you.

kalo Rookie
kalo
Posted

I obviously missed the beginning of this. Sorry to hear that celiac3270 will be undergoing this. I will add you to my prayer list and echo the other sentiments. :)

astyanax Rookie
astyanax
Posted

hey good luck, i hope everything works out ok

celiac3270 Collaborator
celiac3270
Posted

Yes! I've been trying for half an hour to get in....my internet connection was really screwing up for me. It's 7:30 in NYC now.....I had told you before that they wanted me at the hospital by 9:30 for an 11:30 endoscopy. Now, they want me early--8:30 at hospital for 10:30 endoscopy......

Anyway....it's the big day :).....I'll post when I get home, whatever -- unless the internet messes up on me, again.....

Thanks again

-celiac3270

celiac3270 Collaborator
celiac3270
Posted

Hi,

The endo. ended a few hours ago, but I couldn't get on here until now to tell you. As I said, I had been having trouble with my internet connection. In my first endo, the doctor only took "one biopsy" of the intestines. This time I had a lot more samples taken....the doctor said that he took a few extra samples to check for any problems with lactose.

Obviously, it'll take awhile to get the official results of everything and get the testing of the samples done, but based on what he could see, the doctor said that the intestines were smooth without any "scallop marks". My stomach, however, looked red and irritated (red spots all over the inside of my stomach. We'll try to find out what's causing that irritation. There are no ulcers and nothing wrong in terms of appearance (besides redness and irritation in stomach).

I didn't feel that well coming out of it. Because it was a longer endoscopy, the nurse said that I probably got a lot of air into my stomach and therefore, abdominal pains, gas, and bloating would be perfectly normal. Additionally, I could experience nausea from the anysthesia. I have been nauseaous since I woke up and have had abdominal pains. The doctor actually thinks that the abdominal pains may be due to gas based on how I described them feeling, where they're located, and how I cope. Rocking back and forth dislodges the gas, curling over or putting a pillow over my gut are both methods of kind of squeezing it and therefore, pushing out the gas, and when it gets really bad, I often extend my bottom up into the air (sorry to get so detailed :D ), which the doctor said is the easiest way to get gas out. Anyway, it was a very imformative day, though I'm feeling the effects of the endo.. Last time I had no nausea, pains, vomiting, or anything and could have even gone for a run or something after. This time I didn't feel that good and it turned out that I had to wait three hours after getting to the hospital, so I ended up starting at 11:30, anyway, even though I arrived an hour earlier as they had directed due to someone else cancelling.

Oh, the doctor said that when the villi don't heal completely due to length of time with celiac disease and without treatment, sometimes the enzymes are damaged, as well....I can't explain it very well, but it could be that my intestines can't handle.....say, sugar...so he's going to find out about that when he reviews all the stuff......(you can't see the villi while doing the endo.)..........

Anyway, thank you for your support. I'll let you know when I get the official results back and until then, I think I'll just try to rest up and feel better.

-celiac3270

gf4life Enthusiast
gf4life
Posted

Hi celiac3270.

Thanks so much for the update. I sure hope you start feeling better soon, you should feel back to "normal" by tomorrow, but your "normal" has not been that great. We all want to see you feeling great. Certainly something is causing the irritation in your stomach. Hopefully the doctor can help you figure out what it is.

Get some rest and feel better.

God bless,

Mariann

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Hi celiac3270,

Thought about you today at work, hoping all was well.....

I know results won't be for awhile, but I am glad you have it over with.....

Karen

Guest jhmom
Guest jhmom
Posted

celiac3270, I thought of you today too. I am sure you are glad that's all over with, now you just gotta wait on the results which sometimes can be the hardest part.

Take care of yourself and feel better!

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Awww, celiac3270!

I am glad it is over with and maybe you will start feeling betterfrom the procedure.

celiac3270 Collaborator
celiac3270
Posted

Thank you :D ....just vomited, but cramping and nausea are now gone....it's 9:06 and I have to go study for two tests.....thanks

plantime Contributor
plantime
Posted

Hey, celiac3270. Just take it easy and rest now. Let us know what the results are.

kalo Rookie
kalo
Posted

Hi celiac3270. I'm glad it's over as well. will be interesting to see what they find out. Never heard of just red spots all over the stomache. As one who had the stomache flue comming out both ends 24/7 for 3 weeks at a time every year growing up I DO HOPE you'll FEEL BETTER SOON!!!!!!!!!!!!!!!!!! ;)

celiac3270 Collaborator
celiac3270
Posted

Thanks, everyone. I got my results! And I haven't been sick since the biopsy and that was from the anysthesia (yay! knock-on-wood). The doctor just called and said that:

- The villi are looking good! :D Healed and grown back

- No additional intolerances or allergies. :D

- Stay away from complex sugars and tomato sauce just to be safe, since I've been doing better without them.

- No ulcers

- No cyclic vomiting, cause the symptoms had been coming every few days instead of once a week -- very good.

- It's just a matter of a little more time. It's like a car at a high speed. The gluten-free diet puts the brakes on, but it still takes a little while to stop completely. I'm finally coming to that stop.

- The gluten-free DIET IS WORKING!

-celiac3270

Guest barbara3675
Guest barbara3675
Posted

Just couldn't resist a chance to talk with the famous celiac3270. My name is Barbara and I have been lurking around the boards for a few weeks now. I just did the complete Enterolab thing today and sent it off. I have been eating gluten-free for about 6 weeks now and am just now thinking it is working. I had such tummy tenderness and pains in my stomach at times and that is just now going away. I have a granddaughter that is six who has confirmed celiac disease....she was so sick when she was one and just a healthy little specimen now. Her folks are very vigilant about what she eats and she is so brilliant about it too. Her mom is the one who suggested that I might go gluten-free and be tested because of some of the problems that I am having. I did have a blood test at the doctor's office which came back negative, but I certainly don't trust that. I have a son with ADD and I have fibromyalgia and I am convinced that there can be a connection between the two. I also think I may have a lactose intolerance as well as a gluten intolerance. I just don't want to get celiac disease so I think I will eat gluten-free to prevent that. I anxiously await the results of the Enterolab test....I bought the good one with the gene tests too.....hope I am not a sap. I did hear of a lot of people on these boards that used that lab before I went ahead and used them. I am the cook in our own restaurant which presents it's own challenges, but now I don't do any "picking" because all that food is "tainted"!!!!!!!! I do have some fries, occasionally, the day the oil is changed and before anything else is cooked in it....for a little treat. And here is the best thing, I am losing weight. My body really seems to like this way of eating. Before I was such a carboholic and now I just don't crave food that much....I am so much better in control of my eating habits and eating healthier. Best wishes to you, celiac3270, on your testing. I will keep up with you and this board. I am 59 years old and they say that fibro and gluten intolerance can set in during these years....Barbara

tarnalberry Community Regular
tarnalberry
Posted

congrats on the fabulous results! :-)

ryebaby0 Enthusiast
ryebaby0
Posted
  • Author

Wow! That's WONDERFUL!!! I'm so excited for your good news -- and no new allergies, too! A good day, indeed.....

Joanna

Canadian Karen Community Regular
Canadian Karen
Posted

Hey celiac3270!

That is amazing news!!! I had a really rough day today so hearing some good news lifted my spirits a bit!!! I am so happy for you!

One day at a time, and slowly but surely the gluten-free diet will heal your body.....

Karen

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. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748
    Cici123
    Newest Member
    Cici123
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.