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

Egd Results

gabyy

Recommended Posts

gabyy Rookie
gabyy
Posted

Hi everyone,

I just got partial egd results and already have some questions!

To recap my stroy, I have had severely low ferritin levels for years. My PCP ran the celiac blood panel on me last year - it was negative. When my ferritin levels dropped again this year after being on iron supplements, I was referred to a gi doctor. The only stomach sI have are bloating and occasional heartburn.

The gi doctor decided to do an egd and colonoscopy. He wanted to rule out celiac, chron's, and ulcerative colitis. Right after the egd/colo, he told me that everything looked normal except for some mild gastritis, and the appearance of the intestinal tissue was normal. He told me that it would take three to four weeks for the final pathology on the intestines to be in, and to schedule an appointment for next month. He also told me that if the biopsy was negative, he would refer me to a hematologist.

Today I got a phone message (I always miss the important calls!) from my gi doc's nurse that my biopsy results were in and that they were abnormal. The nurse then said that they were abnormal due to inflammation. She said she was sending a lab slip in the mail because I would need additional blood work. She also said I needed to come in for an appointment next week. So I of course called back, but was only able to leave a message for them to call me back.

I looked on the internet and found that celiac disease can cause inflammation that then leads to destruction of the villi. Also, I found that for Chron's disease the main symptom is inflammation. So I guess my quesrtion is has anyone been told that the biopsy was positive for inflammation and what did that mean? Is inflammation enough to diagnose celiac? Does anyone here have Chron's also? (I have NO symptoms of chron's disease).

I guess I will find out more if I get a call back, and will definately know more when I see the doc! But the waiting is already difficult and its only been a few hours. If anyone has ANY info, I would really appreciate it!!

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

I am no help... but please keep us posted when you get the consult with the doc...

Wishing you the best.

ravenwoodglass Mentor
ravenwoodglass
Posted

Inflammation and some changes in cells can indicate celiac. When my DD had her biopsies done they found inflammation and what the GI doctor called early celiac changes in her mucosal lining. While I can not of course tell you with certainty that that is what was found in your biopsies it is a common finding for us.

As for the Chrons issue, it is highly unlikely with no GI symptoms other than the ones you mentioned that you have Chrons. Chrons is generally a very painful disease, to my knowledge, there may be exceptions to this but I haven't heard of 'silent' chrons, 'silent' celiac is not uncommon especially when you consider that in our society 'tummy' problems are considered normal and part of our life. Just look at the pharmacopia of tummy meds you can get over the counter. I considered myself to have a normal GI system until I had been gluten-free for a while. I thought gas, bloating, and occasional C or D were normal for everyone when I was younger. It is not.

I hope you get things figured out and that you get your report from the doctor soon. If you are not working you may want to ask to be put on the 'cancelation list' so that if someone else cancels an earlier appointment you can slide in that day.

Meanwhile have you given the diet a strict try? Now that you have had blood work and biopsies done by the doctors it may be the time to let your body tell you what it needs. A couple of months on a strict gluten-free diet and then a short challenge may tell you all you need to know. Also be sure to get blood work done on a regular basis, every 3 to 6 months, once you are on the diet to check and see if those levels go up.

gabyy Rookie
gabyy
Posted
  • Author

Hi Everyone,

Thanks for your replies, I appreciate it.

I was able to speak to my doctor's nurse today. She read the biopsy results to me "inflamatory changes to the small intestine, consistent with Celiac disease". She then said that only the doctor could officially diagnose me, but it sounded like I had Celiac disease. The doctor also ordered a CBC, ferritin, celiac panel, and I think folate, b12, and calcium levels to be done before my appointment. My actual appointment is not for two weeks due to my schedule. So I will continue to eat gluten until I get my bloodwork done, and may contine to eat gluten until my appointment. This will be hard for me. I love gluten, and since I don't have many gi symptoms, I probably won't feel much different once I stop eating the gluten. Its going to be hard to stay on the diet.Thanks for your help, I will continue to post here for support.

Erin

Gemini Experienced
Gemini
Posted
Hi Everyone,

Thanks for your replies, I appreciate it.

I was able to speak to my doctor's nurse today. She read the biopsy results to me "inflamatory changes to the small intestine, consistent with Celiac disease". She then said that only the doctor could officially diagnose me, but it sounded like I had Celiac disease. The doctor also ordered a CBC, ferritin, celiac panel, and I think folate, b12, and calcium levels to be done before my appointment. My actual appointment is not for two weeks due to my schedule. So I will continue to eat gluten until I get my bloodwork done, and may contine to eat gluten until my appointment. This will be hard for me. I love gluten, and since I don't have many gi symptoms, I probably won't feel much different once I stop eating the gluten. Its going to be hard to stay on the diet.Thanks for your help, I will continue to post here for support.

Erin

Erin.....I think once you find out how easy it is to find replacements for most all of the gluten-free stuff you eat, you'll find it very easy to adopt this lifestyle. It's really not a diet, it's the correct way to eat.

I also think you may not realize how many symptoms you really have that are attributable to gluten. I had weird things happening that I never connected to celiac disease and they have disappeared for good. There's many an epiphany moment during the healing process.

I made eggplant parmesan and calzone for dinner the other night and my gluten eating husband raved about it. There isn't much I haven't been able to replace.

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,869
    • Most Online (within 30 mins)
      7,748
    Stacy W
    Newest Member
    Stacy W
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.