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

Upper Endoscopy Results

aeryn

Recommended Posts

aeryn Rookie
aeryn
Posted

So a quick recap of what's been going on:

I went to my primary care physician about abdominal bloating and pain, excessive gas, and nausea when eating. (There are a lot more symptoms, but just trying to keep this brief.) She tested me for H. Pylori (negative) and Celiac (negative.) She prescribed taking an acid reducer for a month, and then to meet with her again after that. I took it for less than 2 weeks before I had to stop - it was making the nausea worse, and it was 24/7 instead of just when eating. I met the doctor again and she tested my thyroid (normal) and sent me off to see a gastroenterologist. I met with the gastroenterologist who told me that gas and bloating and very difficult to diagnose and that he didn't think there was really a problem. He said that he didn't feel Celiac is the issue since the blood test is "extremely accurate." He prescribed Levsin, recommended I see a gynecologist (to be tested for endometriosis) and only at my insistence scheduled an upper endoscopy.

I had the EGD last night, and he found gastritis at the entrance to the small intestine. He biopsied it, but it'll be a week before I get those results. His comments after the procedure were basically that I should just suck it up and live with it.

At this point I feel a bit jerked around by doctors, and am thinking I should just try the gluten free diet and see if it helps at all. You guys have more experience with this, what do you think?

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

suck it up and live with it???? OY VEY.. these docs ...good LORD...

1st, if you want to post your blood test results- we would all help explain if they're incomplete or not...

also- were you ingesting enough gluten before testing?

unless you have an ulcer- antacids can do more harm than good. it messes up your digestion in your stomach- and then your small intestine gets this huge load of undigested foods. plus if you're stomach doesnt work right, then your pancreas & liver wont get the right signals... all this can make you nauseaus.

there's more possibilities too that these docs never consider... like SIBO, or parasites... or other malabsorption issues.

you do not have to "suck it up and live with it"

Skylark Collaborator
Skylark
Posted

Ugh. Bloating and gas is usually celiac, lactose intolerance, or fructose malabsorption. You can post your celiac panel if you like, including total IgA. If you've had all the testing done, yes it's time to start working on your diet.

aeryn Rookie
aeryn
Posted
  • Author

I do have lactose intolerance, but I'm careful about what I eat for dairy products.

There really wasn't much for blood test results, but this is what there was (I requested copies of the results):

H Pylori IGG NEGATIVE

H Pylori IGA NEGATIVE

H Pylori IGM EQUIVOCAL

tTG AB IGA <3 U/mL Value explanation: <5 Negative 5-8 Equivocal >8 Positive

TSH 1.06 Normal range 0.35 - 4.95

Skylark Collaborator
Skylark
Posted

So no total IgA to know whether the tTG IgA was valid? Bummer. People who are IgA deficient need tTG IgG to diagnose celiac. Well, maybe there will be info in the biopsy. If you're not concerned about the blood work you can start the diet, but it would be nice to have all the rest of the tests run.

You're either going to want gluten-free, low FODMAP, or both. This tells a little about low FODMAP.

Open Original Shared Link

aeryn Rookie
aeryn
Posted
  • Author

I'm concerned about all of it, I just don't know what to do really. My PCP and the gastro obviously don't think there's an issue, and I don't know if I should insist on things from them that they don't want to do, or go find someone else who will do these tests. Then again, if I go shopping around and/or insisting on these tests, how is that going to affect my insurance? Will it cover it or not? Do I stop with the tests and go gluten free and see if it helps, and if so, gluten again and get more tests? Or just stay gluten free? But then will I be tempted to cheat, not having the tests to force me in line?

In case you can't tell, I overthink things a lot.

Skylark Collaborator
Skylark
Posted

OK. You've had the biopsy so that's done. What you might do if it's negative is go back to your PCP, and make sure there was a total IgA. If not, tell her that you still feel bad, you know she doesn't think you have celiac but could she please humor you with total IgA and tTG IgG to be sure the celiac panel was right?

Then go try the diet. ;)

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

Celiac.com Sponsor (A8-M):


Looking for answers Contributor
Looking for answers
Posted

Hi,

I have suffered bouts of severe gastritis, I mean so severe that it radiates to my back, I lose my appetite, wish I could have a stomach transplant kind of pain. gluten-free diet definitely helped, but I went through another severe bout a few months back, had an allergy panel ran, discoverd I was highly allergic to eggs and had to cut them out as well. Also turned out that I couldn't tolerate the psyllium husks I added to my smoothie each day and once I stop eating that, it cleared up and I'm as good as new.

My advice: Kick the antiacids. They only make your digestive track worse. When I need to calm my stomach I've found these things work much better: black licorice root by enzymatic (I believe that the name) was my savior during the tough times. Drinking aloe vera (available at health food stores) tastes decent and puts out the internal burn. Manuka honey works miracles...take a tablespoon every morning. L-glutamine powder helps repairs the damage tissue.

Here are two other things to consider: hpylori is sometimes hard to detect. My blood tests came back negative but stool samples should positive. Either way, I wasn't about to go under the crazy antibiotic regime required to get rid of it, so I started eating brocolli sprouts and taking oil of oregano, lots of probiotics and digestive enzymes. All help greatly. Also, when times were at there worse, I slept on a wedge pillow.

Sorry to ramble, but I can't suggest highly enough you try to figure out all the foods you are having issues with. You may consider staying on a very bland diet of rice, chicken and veggies for a week or so and then slowly adding food back in. I can tell immediately when I've eaten something I'm intolerant or allergic to - the gastritis fires right back up.

I literally feel your pain. Good luck and let me know if you need any additional informaiton.

P.S. Follow the advice above and get your IGAs tested. You should definitely finalize those tests.

aeryn Rookie
aeryn
Posted
  • Author

I'm not on any antacids currently. I'm keeping a food diary, though right now it's just serving to remind me how much less I'm eating compared to what I used to be able to eat. I'll wait for the biopsy results and then take it from there. I'll keep the bland diet in mind :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm not on any antacids currently. I'm keeping a food diary, though right now it's just serving to remind me how much less I'm eating compared to what I used to be able to eat. I'll wait for the biopsy results and then take it from there. I'll keep the bland diet in mind :)

You can go ahead and start on the gluten-free diet now that the biopsy is done. You don't need to wait for the results. Do keep in mind that there are false negative results with the biopsy as well as the blood tests so a trial of the diet is needed no matter what the results.

cassP Contributor
cassP
Posted

YES!!! Broccoli Sprouts prevent the H.Pylori from reproducing and setting up camp B)

Skylark Collaborator
Skylark
Posted

You can go ahead and start on the gluten-free diet now that the biopsy is done. You don't need to wait for the results. Do keep in mind that there are false negative results with the biopsy as well as the blood tests so a trial of the diet is needed no matter what the results.

Well, as long as you're not wanting any other tests. If you decide to go back and ask about the total IgA and anti-tTG IgG, you still need to be eating gluten.

And yes, you absolutely want to try the diet. Raven is so right about false negatives.

aeryn Rookie
aeryn
Posted
  • Author

I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

Skylark Collaborator
Skylark
Posted

I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

Sheesh. Well, good luck with the diet. I hope it helps.

cassP Contributor
cassP
Posted

I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

OMG! what a waste of time & money & endoscopy!!!!! geez ... no wonder our medical system doesnt work and costs so much... :angry: ridiculous

  • 2 weeks later...
CDFAMILY Rookie
CDFAMILY
Posted
I just got off the phone with the gastro - the only thing he checked for on the biopsy was H. Pylori! (Negative, which matched the blood test.) I'm fed up with doctors - time to go gluten free and hope for the best!

Oh this makes my blood boil! I am not sure but if he took biopsies for H Pylori then could he not go back and test those same biopsies for Celiac? I would demand he does because that is what YOU thought you were going in to be tested for. If he refuses maybe you should refuse to pay him. I am not sure this is great advice but it sure would be nice to start making doctors responsible for their actions and incompetence.

Maybe write to the doctors at Columbia U Hospital and see if they would check the biopsies for a second opinion. If your doc knew this was going to happen, he might just change his mind on checking for Celiac.

Archived

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

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


  • Member Statistics

    • Total Members
      126,209
    • Most Online (within 30 mins)
      7,748
    Ashley P.
    Newest Member
    Ashley P.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...