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

Got My Results...strange And Unbelievable!

madiva87

Recommended Posts

madiva87 Rookie
madiva87
Posted

So I had my testing (colonoscopy & EDG) done 2 weeks ago and was told in recovery that I had erosive gastritis and 4 polyps removed. They were to call me in a week with the biopsy results. Today I called them and said I never received a call with my results. A nurse gets on the phone and reads me my results. The polyps were pre-cancer as opposed to benign. And oh by the way your colon shows changes so you need to stop your excessive use of laxatives. What??? I've never used laxatives! Why would my colon show changes and what does that mean? She stutters and says "well I don't know". Have you ever heard of such a thing? I did tell the nurse that I've been gluten free for 2 weeks and the stomach pains have almost stopped. Seems like more of no one knowing what the problem is...... :(

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

So I had my testing (colonoscopy & EDG) done 2 weeks ago and was told in recovery that I had erosive gastritis and 4 polyps removed. They were to call me in a week with the biopsy results. Today I called them and said I never received a call with my results. A nurse gets on the phone and reads me my results. The polyps were pre-cancer as opposed to benign. And oh by the way your colon shows changes so you need to stop your excessive use of laxatives. What??? I've never used laxatives! Why would my colon show changes and what does that mean? She stutters and says "well I don't know". Have you ever heard of such a thing? I did tell the nurse that I've been gluten free for 2 weeks and the stomach pains have almost stopped. Seems like more of no one knowing what the problem is...... :(

Get copies of everything - the op or procedure report and the pathology reports. Read them yourself. What did they say to do about the polyps? My hub was told a repeat colonoscopy in 1 year. You should insist on a follow- up with the GI right away. To say your colon looks like its been abused has to mean something if you aren't doing anything. What were the results from the endoscopy. Make sure they really biopsied.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I agree with Karen. Get an appointment for a follow up visit as soon as you can. Have the Dr. explain what the findings were, and what your treatment plan will be.

Also, be sure to get copies of the reports. Keep a file of your medical info/test results. Sometimes we are told things by an untrained person who happens to answer the phone, that aren't true or are half true?

I had colo-rectal cancer and had to have a colonoscopy 1 year after surgery for a recheck. Thank goodness they found your polyps before they were cancerous.

They should tell you when to have a recheck. Don't freak out about it. That sort of cancer is slow growing, so if they keep an eye on things it's nothing to be fearful of.

Stay with the gluten free. It sounds like it's helping you?

madiva87 Rookie
madiva87
Posted
  • Author

I will definitely get the report. I do feel better gluten free so regardless I think that's the new eating. And I think I'm going to get a second opinion. I only hope they can read the results without another colonoscopy :(. The nurse said I would not need another for 3 yrs. but then she's the one who told me to stop my excessive laxative use! So frustrated that I've had issues for 20 yrs and I just keep getting the run around. First they take out my gallbladder telling me that was my problem. Then they say I have lupus.. No wait , maybe not. Then hastimoto, then osteopenia. Now this... Who knows what the real issue is at this point but the ten year rash on my hand is healing gluten free so if nothing else, that helped! Thanks so much !! I'm glad I found this website , it's been so helpful!

mushroom Proficient
mushroom
Posted

First they take out my gallbladder telling me that was my problem. Then they say I have lupus.. No wait , maybe not. Then hastimoto, then osteopenia. Now this... Who knows what the real issue is at this point but the ten year rash on my hand is healing gluten free so if nothing else, that helped! Thanks so much !! I'm glad I found this website , it's been so helpful!

All the things I have put in bold are indications that you are celiac, including the false diagnosis of possible lupus.

If you have osteopenia it is a good indication that you are not absorbing nutrients from your foods, and that those levels (vitamins and minerals, including iron/ferritin) need to be checked. Osteopenia is a sign you are low in Vitamin D. Did you learn this through a bone scan and did they give you supplements for it? The sooner you get a copy of all your lab results and pathology the better, and please tell us what they say. :)

madiva87 Rookie
madiva87
Posted
  • Author

Hopefully tomorrow they will give me the results. We have the wonderful benefit of an advocacy company thru our insurance. After that phone call today I called them. They will help guide me thru some of this ... Getting a second opinion, etc. I hate to feel like I'm a whiner but it's been going on too long. I was hopeful that when I gave in and did the "gold standard" test I would get an answer one way or the other. But what I got was I have changes to my colon from excessive laxative use! I'm just blown away by the comment, as if I would do this to myself! I'm so sorry for venting on you all, without this site I really would be thinking I was just a nut! It's so nice to have somewhere to go where others feel the same way and understand the physical side of it.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I will definitely get the report. I do feel better gluten free so regardless I think that's the new eating. And I think I'm going to get a second opinion. I only hope they can read the results without another colonoscopy :(. The nurse said I would not need another for 3 yrs. but then she's the one who told me to stop my excessive laxative use! So frustrated that I've had issues for 20 yrs and I just keep getting the run around. First they take out my gallbladder telling me that was my problem. Then they say I have lupus.. No wait , maybe not. Then hastimoto, then osteopenia. Now this... Who knows what the real issue is at this point but the ten year rash on my hand is healing gluten free so if nothing else, that helped! Thanks so much !! I'm glad I found this website , it's been so helpful!

You sound like so many of us here with the 20 years of no diagnosis/misdiagnosis. My Dr. had me pegged as a hypochondriac and kept telling me there was nothing wrong with me.

A LOT of your other issues go right along with Celiac disease. Most Dr.s don't even think to check for Celiac. Many still think of it as a rare disease.

Stay the course of gluten-free and your future health should improve.

Best wishes to you... :)

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

Celiac.com Sponsor (A8-M):


Ginger7 Rookie
Ginger7
Posted

Well, Madiva, I had a similar experience with my scope in December. It revealed "melanosis colo" which is a pigmentation of the intestines and supposedly related to laxative abuse. I was told the same thing, and I know my GI thought it was all in my head even though I had malabsorption, low WBC and many other symptoms I won't go into here. I had diarrhea sometimes ten times per day and was the main reason for seeing GI. To have him conclude that I'm a hypochondriac liar and tell me to take as many Imodium as I want per day, see you later. Yeah, thx, I won't be coming back to you. I don't take laxatives and this can't be the only cause of melanosis coli...

madiva87 Rookie
madiva87
Posted
  • Author

Well that makes me feel better that I'm not the only one. I definitely won't be back to those doctors. I take my husband along so we can ask the questions and this "PC" doesn't have a clue. I say what else can cause this and she says "hmmm.... well I don't know, but I wouldn't worry about it". Okay well you're not the one who has been having issues for 20+ years. I also notice on the biopsy report that the lab received an empty vital. They apparently called the OR immediately but....... So then we asked this PC about the pre-cancer polyps how would we know if we need to get re-checked before the 3 years and she says "well you already have abnormal bowel habits, stomach pains and blood in your stool, so hmmmm...I don't know maybe if you lose weight unexpectantly". So I say to her that I've gone gluten free and already the rash on my hand has cleared up and I don't have quite the pains in my stomach. We also asked about the erosive gastritis and she doesn't think that's anything either. She thinks it's just IBS, so 20+ years later without a gallbladder, 10 years of hashimoto and osteopenia we still don't have any answers other than precancer polyps, erosive gastritis and melanosis coli,,,,

Ginger7 Rookie
Ginger7
Posted

Should have said melanosis coli above, not colo. Anyway, there are a lot of us "IBS" patients and I like what I read on one of these boards that says IBS stands for I Be Stumped!

madiva87 Rookie
madiva87
Posted
  • Author

Too bad we suffer because they aren't sure...

Ginger7 Rookie
Ginger7
Posted

Yep, I'm with you, over 20+ years of symptoms though only aggressively pursuing reason for last 5 years. I think I just accepted it as normal or normal for me since I had IBS. But when it impacted my second and third pregnancies with complications, I knew something was wrong. Thankfully, my kids are healthy, and I'm slowly getting better now that I'm gluten free. I saw a difference during my first week gluten free!

Archived

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

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


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.