Jump to content
  • 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):

Endoscopy/biopsies Done On Monday... Just Now Starting To Feel Better From That Rough Go...


MsCurious

Recommended Posts

MsCurious Enthusiast

Hi everybody,

I had my endoscopy Monday, and it was pretty rough going. I figured my throat might be a little sore, but if felt like they jammed a knife down the right side and left it there. They had a tough time getting the scope going, and I remember having like "dry heaves" about 6 times and then they must have really upped the sedative because it knocked me out completely.I don't remember a thing after that. I think the doctor must have taken biopsies of my stomach and more than one in my esophagus area. Felt like I had a drill go through my insides in a few areas.... felt pretty beat up Tuesday, and had a fun time with diarrhea every hour on the hour for 6 hours. I don't know...maybe it was the sedation or something, that caused it, although I did eat wheat tuesday. Anyway, that's over and I'm starting to heal, but things are still tender.

When it was over, the doctor went out to the waiting room and told my husband (first thing out of his mouth) "she can't have ANY dairy, EVER.. for the rest of her life." I didn't find this out until we were out in the car on the way home, but after I was out of recovery, the doctor came and told me the very same thing. I tried to get him to tell me if he found anything, but about all he would say was "the procedure went well, and I'll let you know when the lab reports come back." He finally did say there was a lot of inflammation, but that's all he would say, so I don't know if he didn't see anything else, or if he just didn't want to say anything until he sees the lab results, before telling me for sure what's going on.

Then today I got an email from him that said, "you can start a wheat free, gluten free diet, and DO NOT eat any dairy/lactose. The lab tests will be in next week, and I'll call you with the results." So basically I'm still waiting, again... but at least I have the green light from the doctor to go gluten free now. Do you think he would tell me to go gluten free...if there wasn't some indication that it was necessary?

I'm looking forward to feeling better, but honestly... its a bit overwhelming. Things I assumed were okay... I went to make for dinner tonight and every single thing had either gluten or dairy in it in some form... except for the hummus and corn chips...so that was dinner tonight. Not very healthy, but at least no gluten or dairy. I'm going to attempt to do some grocery shopping tomorrow so I have a few things in the house. If anybody has suggestions for gluten free dairy free cookbooks or recipe sites... I'd be most grateful for the information. Thanks!


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

but at least I have the green light from the doctor to go gluten free now. Do you think he would tell me to go gluten free...if there wasn't some indication that it was necessary?

No, Ms. Curious, I think you can fairly safely assume that there was sufficient damage to the naked eye to indicate that you have a problem with gluten :) Sorry that you had a bit of a rough time with the endo, but now everything is done, all the i's are dotted and all the t's are crossed, and you can get on with a gluten-free life. Yes, I think a shopping list and trip are definitely in order.

goodnews Apprentice

Well I am sure you are glad that is over with! So glad you will be getting some answers soon. I can't imagine a dr. suggesting you go gluten free unless the saw something indicating it would be necessitated or beneficial. That really stinks about the dairy part too. My dr. seems to feel like it's all the gallbladder. Although he did tell me that some of his patients with IBS feel better after gluten free and they seem to have gluten sensitivity. But he still suggests getting the gallbladder out first and then seeing if I still feel sick at all before trying a diet that may not be necessary. I know on the 5 days I went gluten free before he gave me the results it completely fixed the constipation I was having and got significantly worse the day I went back on gluten.

There are a ton of good gluten free recipes out there on-line. Just search around. I am sure others have some suggestions as well. I noticed a lot of good gluten free products on Amazon too..which is nice because it showed you ratings as well. I am sure others have a lot more advice on this subject though. Good luck to you and hope you are feeling better soon!!

ravenwoodglass Mentor

Although he did tell me that some of his patients with IBS feel better after gluten free and they seem to have gluten sensitivity. But he still suggests getting the gallbladder out first and then seeing if I still feel sick at all before trying a diet that may not be necessary. I know on the 5 days I went gluten free before he gave me the results it completely fixed the constipation I was having and got significantly worse the day I went back on gluten.

This is some of us are saying to do the diet strictly before having the surgery. Nothing against your doctor but he won't make any money if you do the diet first and then the gallbladder issues clear up. I haven't had any gallbladder pain at all since I went gluten free. Don't know if that would be the case for you but IMHO it is worth a shot before getting an organ removed that will require you to be on a different restricted diet for the rest of your life.

ravenwoodglass Mentor

Glad you are finally feeling better and can now go full force into the diet. I agree with the others that the doctor likely wouldn't tell you to get on the diet if he hadn't seen strong evidence of the need for it. I hope you are feeling better soon.

goodnews Apprentice

This is some of us are saying to do the diet strictly before having the surgery. Nothing against your doctor but he won't make any money if you do the diet first and then the gallbladder issues clear up. I haven't had any gallbladder pain at all since I went gluten free. Don't know if that would be the case for you but IMHO it is worth a shot before getting an organ removed that will require you to be on a different restricted diet for the rest of your life.

I know I know. ;) If I was single or didn't have kids It would be so much easier to just start that diet. I also wish it would clear up quickly and my stomach would feel better quickly after starting that kind of diet so I wouldn't have to wait forever to see if it is working. Oddly enough in those 5 days my stomach felt a little worse then it feels now even though I wasn't constipated. Maybe that was just the start and it would feel better later. It's just so hard because I have still have no research saying the diet heals gallbladders that are failing. I just kind of think I need it out and then may need to start the diet in the future. But I am quite conflicted on the whole thing.

mushroom Proficient

I guess those of us who are suggesting you wait believe you will need to go on the diet anyway, and how much better to do it now and see if it will help your gallbladder than find out later you still have to do the diet and will never know if it could have helped the gallbladder. Dispensing with body parts should not be undertaken lightly, especially since not having a gallbladder will further restrict your eating options.


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



Celiac.com Sponsor (A8-M):



zimmer Rookie

mscurious - hope you feel better soon, and that you get some answers re your situation. I know you are glad to get your testing done finally!

goodnews - I have to chime in on the side of leaving your body parts where they are. Surgery is a serious thing - there are many dangers inherent in the procedure (anesthesia, infection, accidental damage to other organs, development of scar tissue that can cause problems, recovery time). Not to try to scare you, but a friend's father went in for gall bladder surgery one January,and he was supposed to be home the next day or two. But, they nicked his intestine, and it was July before he was aware of his surroundings again.

As for the difficulty of the diet - I have small children, large children, a husband, dogs... and we are making my diet work for the family. It's been a gradual process and not always easy, but it is certainly do-able. And we are all becoming healthier in the process.

goodnews Apprentice

Ms. Curious - Hope your upcoming trip goes well and you find some good gluten free food and that you are feeling some relief soon. Let us know when you get the other results from the doctor and what they say.

Mushroom and Zimmer - I agree that if I had to have my gallbladder taken out and go gluten free after anyhow that would be awful. Of course if I could go gluten free now for the rest of my life and save my gallbladder that would be okay, but still not my favorite option. My favorite option would be to just have it taken it out and feel much better and not have to go gluten free. The hard part is not knowing what would actually happen. I guess I see your point that there isn't a point in trying. If I go gluten free and am still having the gallbladder pain and it's not getting better....I will just have it taken out. I do have a consult with the surgeon on Monday...but not sure if the surgery is scheduled after that or what. The other reason I am not sure about what to do is that I work in schools and am getting laid off at the end of the school year...meaning I lose health insurance and we go on my husbands insurance which is not at all as good of a plan and involves a bit of a deductible. So if I am going to have to get it out...I kind of want to get this all done soon in some ways. Lots to think about ....maybe I will start going gluten free tomorrow. We will see. I have all the stuff since I went shopping before. I was planning on going gluten free for a while but when my symptoms got worse I didn't think I would make it without surgery. But honestly these last few days things have been a lot better (I also started taking something for the acid reflux type pain that was causing my esophagus to have painful spasms after swallowing). Thankfully those symptoms are going away. Also having a consult with my 3yo daughters doctor next week about her stomach pains and chronic constipation. If she is celiac that will make it a lot easier to have a gluten free household. I did mostly gluten free meals for the rest of the family last time I had my 5 gluten free days. It can be done and I cook a lot so am up for it if I need to be. But there are a lot more pans and dishes when some are gluten free and some are not Thanks for your thoughts again.

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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

    5. - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
×
×
  • Create New...