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Got My Results...strange And Unbelievable!

madiva87

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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...... :(

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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... :)

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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!

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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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