Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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.

Had My Endoscopy- So Confused
0

11 posts in this topic

Hello all. A little recap to my story- went to a new doctor last month, mentioned I stopped eating gluten a few months prior. He ran bloodwork (assuming it would show nothing) and was surprised to find really high antibody levels (endomysial, gliadins) as well as B12 deficiencies and almost non detectable levels of vitamin D. He told me point blank I had celiac and to eliminate all gluten from our home, but wanted me to have an endoscopy to assess the damage and evaluate my esophagus.

I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?

0

Share this post


Link to post
Share on other sites


Ads by Google:

If your diagnosed celiac you can not eat any gluten. It is autoimmune and by continuing to eat just a little will keep the antibody reaction happening. Your GI is stupid to say that a little would be fine.

0

Share this post


Link to post
Share on other sites

If you have celiac, you cannot have gluten, period. You could call the GI back for clarification, but his statement, taken as-is, is wrong.

0

Share this post


Link to post
Share on other sites

Wow. I am sorry for the confusion your endoscopy caused. You can not have a little gluten without causing further damage. I agree call your GI and have him explain the statement.

You were deficient in nutrients and you had positive antibodies even after removing gluten - the antibodies would likely have been much higher had you been tested before removing gluten. Remain gluten-free compliant and re-test your nutrients and celiac panel at either three or six months from the last blood work - your antibody numbers will likely decrease and your nutrients will improve - nutrients can take longer to bounce back - you may need to supplement.

That your villi is not completely flat is great news - either you have been healing or the damage was not yet severe or possibly a combo of both.

0

Share this post


Link to post
Share on other sites

And I would report that nurse's comments to the nursing supervisor - she needs additional training on many levels. How dare she say that you are wasting their time. I've had endos twice since diagnosis at my doctors request and will likely have more in the years to come - at least until my small intestine shows improvement - that nurse has no idea what she is talking about. :angry:

2

Share this post


Link to post
Share on other sites




I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?

No, you can learn from even bad experiences.

Your antibodies should drop on a gluten free diet, but... it takes time, and there is NO guarantee that they will drop completely in six months, especially if you are a newbie and not used to ferreting out cross contamination. False positives are rare. Damage from reflux is a symptom of celiac. Celiac auto immune reaction damages the lining of the intestines so the little points that are supposed to stick up end up going "flat." Not completely "flat" is good. If even the GI doctor after the scope and before they look at the slides for the biopsy says you have visible to the naked eye damage and that you have celiac.... you have celiac. Positive blood test and positive biopsy = standard diagnosis criteria by many. A little gluten is not "fine." Eliminating as much gluten as humanly possible from your diet is your goal, so you are exposed to as small amount of parts per million (microscopic amounts) as possible.

People vary in sensitivity. Some people can tolerate more potential of cross contamination than others, for example, they can eat something made in a facility which processed wheat or was tested to 20ppm gluten free, other people have to avoid much processed food, even if gluten free authentic, and do better with that which tests 5 ppm or less, in order to heal up. Others have to go further and get rid of gluten bearing cosmetics and toiletries, for example, I had to ban gluten containing lotion from the house, because I was getting served a glass of ice water which had been bare - handed by my spouse who had just used lotion after a bath, and there was enough residue to get me. I also got rid of shampoos and conditioners with wheat and oats, and changed to a mineral make-up, because I don't want the residue all over my skin and towels, and I fiddle with my hair a lot, and I have very, very sensitive skin. Coconut oil makes a great conditioner, if you are just now thinking "oh, no!"

Who knows what the GI doctor actually meant as it is not clear whether he meant potential cross contamination is "fine" or a small serving is "fine," either way, gluten, for you, is not "fine," anymore. :unsure: Your primary care physician is correct, no gluten.

Nurse has a bad attitude and should be re educated, but I wonder how many patients this doctor has made sick, or delayed healing of, if he's telling them a little gluten is okay. :angry:

2

Share this post


Link to post
Share on other sites

If you are still going through testing, you need to continue eating gluten. The testing is to find damage caused from eating gluten. It is not worth going through testing procedures when you are on a gluten free diet. IMO Some patients with Celiac do continue having endoscopes to monitor damage. (there is a condition, "Celiac sprue" where damage has never fully healed from the gluten free diet)

There seems to be medical professionals who believe that fully gluten free can not be managed by most patients. This may have led to the confusing statement from your doctor. You need to avoid gluten for the rest of your life. Cross contamination, and accidents will happen during times. You have to make the best decisions on where and what to eat, because you do have to eat something.

You may now find that you have a severe reaction when getting small amounts of gluten, even if you had no symptoms before.

0

Share this post


Link to post
Share on other sites

I am glad that you got such a definative answer with antibody and biopsy agreeing. I hope your worst health fears won't come and you will be healed. I hope you will absolutely have no gluten and your family will rally with you.

Diana

0

Share this post


Link to post
Share on other sites

Your bloodwoork was positive. Your endoscopy still showed some flattened villi even after 6 mos gluten free. You can't get much more positive than that.

Your GI is a dope however. You can not eat any gluten. None nada zilch. Ok?

0

Share this post


Link to post
Share on other sites

Thank you for the replies. I have no intentions of eating any gluten at all, ever! I am just so floored that a GI doctor could be so uneducated! I will not be going back to this office and I plan on talking to my primary care about everything that happened. I am taking this seriously because I have two young children that need a healthy mommy! I am having bloodwork done to re-check my antibody and vitamin levels in a few weeks and my primary care said we'll see where we go from there.

0

Share this post


Link to post
Share on other sites

If you have not already done so, I would get copies of the endoscopy report and read it for myself. There are some people here who can help interpret if you felt like sharing it.

The doc saying the "intestine was not completely flat" is not very useful except to acknowledge that there IS some damage! If you have damage, and you have antibodies, there is no doubt that you have celiac.

The doctor who told you a "little gluten is fine" is an absolute moron. As another poster said, even a little bit of gluten sets off an autoimmune reaction (NOT to be confused with allergy) that can last for MONTHS.

Then there is that nurse who said you were wasting her time. What a piece of work! She should be reported to superiors. Arrgghh.

Hope you'll be feeling really well soon!

Ugh. Dumb doctors.

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
      103,342
    • Total Posts
      917,393
  • Topics

  • Posts

    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined