• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Got My Results...strange And Unbelievable!
0

12 posts in this topic

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...... :(

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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... :)

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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,,,,

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,397
    • Total Posts
      930,327
  • Member Statistics

    • Total Members
      63,814
    • Most Online
      3,093

    Newest Member
    MH0730
    Joined
  • Popular Now

  • Topics

  • Posts

    • I've given up on all those processed gluten free foods out there and have stuck to eating a whole foods diet. I have noticed such a huge, massive, difference in my energy, mood, sleep, and well being. Needless to say I've been doing a lot of cooking but have been leaving sugar out because I don't know the safe brands. I tried using Stevia in the raw but keep getting horrible headaches when I use it. I saw that the first ingredient is Dextrose so it's not "raw". Anyway, what are the safe brands out there as far as white and brown sugars go? I made saurkraut and pork chops last night and would've loved potato salad. Also while I'm on here, what about Mayo? What's safe? I saw Sir Kennsington was gluten-free Certified.
    • My Celiac disease presented as yours did: anemia, unexplained weight loss, aches and pains (due to vitamin and mineral deficiencies from malabsorption), the abdominal burning (whether I ate or not), decreased appetite, itching, the works. Plus I had a mood like a gorgon, which wasn't helped by my friends telling me "how slender!" I looked. My bones were basically all that was holding me up. I've had the blood panel too, which has proven very informative. I had a follow-up celiac panel after I'd been on the diet for over a year and it showed the diet was working. I also went through an anger phase because my (now former) doc (who is also my dad's doc and knows he has celiac AND knows we're related...) just wrote me a prescription for antidepressants, whereas I might have been spared years of feeling crappy (my late 30s!) if he'd just ordered a CBC and found the anemia. I'm a woman and I feel like sometimes whatever you say to a doc (even female docs!), all they hear is "psych symptoms". It really made me mad. But I've always pooped like a champ so I didn't exactly have typical symptoms either. Then I thought about how long it took my poor dad to get diagnosed (decades), which was before there was all this awareness, and I feel grateful for the fact that it took comparatively far less time for me to get my diagnosis and start feeling better. Don't worry about not finding stuff you like to eat: since gluten-free has become "the new thing" there are so many choices and the price has come down considerably since my dad got diagnosed (over 12 years ago). If your doc confirms celiac, then you'll be back on the (albeit gluten-free!) mac and cheese in no time, this time actually absorbing some of the mac and cheesy goodness! Feel better and take care.
    • If you are worried about your glycemic levels, then you should test with a glucose meter.  I have diabetes (insulin resistance/TD2) and rice and potatoes spike me like crazy!  I might as well consume ice cream!  But if you do not have diabetes, no worries!  
    • Thanks to both of you for your replies. I wasn't so much concerned about the arsenic (although that is an additional consideration) as I was about the glycemic level. I don't bake enough to make blending my own flour blends worthwhile, so I will definitely check out the links you provided, Ennis_TX. So far I'm tolerating oats and my gastro doc says I can keep eating them as long as they're certified GT. I just looked at some crackers I have for hummus and noticed their main ingredient is rice. I should probably just eat the hummus with veggies!
    • I agree with Ennis.  It sounds like she is getting access to gluten way too often to expect healing.   I had some pretty severe patches of intestinal damage when I was diagnosed.  Anemia was my symptom and I had no gut issues then.  So, just because she injests gluten and does not have some major symptoms right away, does not mean she is not building up antibodies.  Have those antibodies been re-tested to see if they are in the normal ranges now?  Missing patches of damage in the small intestine is possible.  Heck, the small intestine is the size of a tennis court (goggle it).  So easy to miss.  Also, your GI should have taken more than four samples?  How many were taken? (Forgive me, if I have forgotten.) Cross contamination in your house is real, especially if you have kids in the house.  Member Jebby, a preemie doctor who has celiac disease, was not getting well.  Turns out her four small and adorable children were glutening her.  She made her house gluten free.  Just something to consider.   You mentioned she had access to gluten at a party.  So, does that mean she caves in and eats it?  She needs to become a stakeholder in this diet.  
  • Upcoming Events