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

Good News - Bad News

Claire

Recommended Posts

Claire Collaborator
Claire
Posted

This post could have gone under Doctos as well but hope you all find it here. It is relative to doctors as well as to tests common for celiacs.

I had a colonoscopy and endoscopy yesterday. The colonoscopy was negative - the good news.

The endoscopy results will be back in 10 days. These tests were done by my new GI, He passed the initial interview test with flying colors. Read on to find out how he did after that.

The bad news: the endoscopy revealed gastritis. The WORST NEWS - the doctor failed to take a biopsy of the stomach lining so the type of gastritis could be identified. There are several types - different treatments.

I am MAD and frustrated. I was given a prescription for a med. - but that is ridiculoius. He has no idea what type of gastritis I have. How can he know what to prescribe? Absolute lunacy. He was right there taking a biopsy of the small intestine - a breeze to take a stomach lining biopsy at the same time.

The med he gave me is the same one given to my daughter who has acid reflux. They didn't take a biopsy for her either. Turned out as she keep getting worse, I told her that the symptoms for too much acid and too little acid were almost identical. The med was given to reduce stomach acidly. She stopped the med and improved immediately. No way am I taking that med if they don't know what type of gastritis I have. There is an autoimmune type, common in people with autoimmune diseases. Given my history, that seems the most likely but I will never know unless I have another endoscopy. Insurance wouldn't cover another one for at least a couple of years!

Lesson learned - you tell the doctor if he finds anything at all amiss - take a biopsy! You should not have to tell them to do the obvious - but it seems you must.

As gastritis is a likely problem for those with celiac, I will post some info on the subject under another topic.

Claire

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Gosh Claire, thanks for the heads up. Sorry the doctor didn't go the extra step to find out what you are dealing with. I was found to have gastritis, too during my endo. No other info, and I have terrible reflux. I seem to do better with digestive enzymes--as usual I found that out through trial and error. I'll look forward to your info on this.

let-the -sun-in Newbie
let-the -sun-in
Posted

Hi Claire

when i had my endoscopie i too had gastritus and they took loads of biopsys to make sure it wasnt stomache cancer . I was given acifex for the stomach and it did help but i do still get this frequantly. what was the med he gave you? .

I dont understand why he wouldnt take biopsys thats crazy. my gi told me everything was fine but i got a copy of the results and in black and white she had written that she surspected celiac diease but didnt do anything more. I wouldnt have known if i hadnt got the report. good luck

corinne Apprentice
corinne
Posted

My doc. found gastritis too when he did the endoscopy and he said there was no need to look at it further since I was young and work in a stressful job and it would go away when things calm down. :angry:

Claire Collaborator
Claire
Posted
  • Author
My doc. found gastritis too when he did the endoscopy and he said there was no need to look at it further since I was young and work in a stressful job and it would go away when things calm down. :angry:

Hopefully he is right - that it will go away. I will be posting some material on the subject. Claire

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Claire -- I am so sorry. What a jerk. When I had my endoscopy, the GI doc said that I had mild inflammation, but it wasn't anything to worry about, and didn't need further follow-up. He also told me that, given the meds I had been taking, it was an appropriate amount.

I think that guy should have at least taken 1-2 samples -- he was RIGHT THERE. Those kinds of "blow-off" indicents give doctors the reputation that they don't care. Did he mention his initial impression of the intestinal villi? I'm sure he would have been able to at least see if they were flattened, plump, etc. ..

I'm hoping you'll get a definitive result -- in the meantime, take care of yourself. You deserve better than how you were treated. (((HUGS))), Lynne

Claire Collaborator
Claire
Posted
  • Author
Claire -- I am so sorry. What a jerk. When I had my endoscopy, the GI doc said that I had mild inflammation, but it wasn't anything to worry about, and didn't need further follow-up. He also told me that, given the meds I had been taking, it was an appropriate amount.

I think that guy should have at least taken 1-2 samples -- he was RIGHT THERE. Those kinds of "blow-off" indicents give doctors the reputation that they don't care. Did he mention his initial impression of the intestinal villi? I'm sure he would have been able to at least see if they were flattened, plump, etc. ..

I'm hoping you'll get a definitive result -- in the meantime, take care of yourself. You deserve better than how you were treated. (((HUGS))), Lynne

Thanks, Lynne. I was waiting for you to drop in. I really believe when the doctors do a half dozen or more of these procedures in a morning that they don't know one patient from another - you are just another bare arse on the table! If he had really remembered our office conversation then he would have registered 'autoimmune history' and would have taken a biopsy to check if it was an autoimmune gastritis. Too late now. It will be at least two years before insurance will cover the procedure again. Of the possible causes (types) stress related or autoimmune are the most likely. I certainly have been stressed out since 1996 when a negligent eye surgeon permanently damaged my vision. Then this past two years the ataxia has been an additional issue.

The endoscopy report will be back in 10 days. I expect it will be negative but I really almost hope I am wrong about that. I really need to get something nailed down. Thanks - hugs I need. Claire

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

Celiac.com Sponsor (A8-M):


tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Claire

I almost hope that your celiac biopsy is positive, too. I hate to say that, though. At least you would get some definitive answer. Did you read about the MR Spectroscopy in gluten ataxia patients? It was really interesting. It said that, even though they did not show significant cerebellar degredation on a traditional MRI, this test showed marked decreased signal and decreased activity almost throughout the cerebellum -- all due to the gliosis and the destruction of perkinje cells. It was on one of the Neuro forums . . . I'll try to pull up the site.

I think the only question would be, where in the US do they have a MR spectroscopy machine??? :huh:

Sending you many more ((((((HUGS)))))) and I hope you start recovering from what sounds like a disappointing and borderline traumatic experience. Take care of you, Lynne

Claire Collaborator
Claire
Posted
  • Author
Hi Claire

Sending you many more ((((((HUGS)))))) and I hope you start recovering from what sounds like a disappointing and borderline traumatic experience. Take care of you, Lynne

Thanks again. If you can find the article I would like to see it. Claire

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
    5. trents
      - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.