• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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

Recommended Posts

Momma Bear    1

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?

Share this post


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


Roda    186

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.

Share this post


Link to post
Share on other sites
tarnalberry    314

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.

Share this post


Link to post
Share on other sites
GottaSki    459

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.

Share this post


Link to post
Share on other sites
GottaSki    459

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:

  • Upvote 2

Share this post


Link to post
Share on other sites
Ads by Google:


Takala    413

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:

  • Upvote 2

Share this post


Link to post
Share on other sites
mommida    158

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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

Share this post


Link to post
Share on other sites
MitziG    94

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?

Share this post


Link to post
Share on other sites
Momma Bear    1

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.

Share this post


Link to post
Share on other sites


Ads by Google:


beachbirdie    43

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.

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
      107,891
    • Total Posts
      938,513
  • Member Statistics

    • Total Members
      65,802
    • Most Online
      3,093

    Newest Member
    Mary 4605
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am so sorry that you are sick.  I think you have to decide if you want to get back on a gluten free diet and get tested or remain gluten free and seriously eat as if you had celiac disease or NCGI.  That means following celiac cross contamination protocol.  Like not sharing toasters (unless you use toaster bags), condiments  (unless squeeze bottles), etc.  NO dining out until you are seeing significant improvement.   Each time you dine out it is like playing Russian Roulette.  Go when you have mastered the diet and can afford to take a hit.   Here is the deal.  Celiacs all react differently.  If they get "glutened" it can generate symptoms swiftly or it can take a while for those antibodies to ramp up and you will not feel the effects for a day or so.  It can take weeks, months or years for antibodies to stop attacking your body.  A few gluten exposures, antibodies ramp up, you feel awful, start to recover and then you take another hit from gluten.  It can be a vicious cycle.  Many celiacs take a long time to recover, but the learning curve to the diet is steep.  I think you realize that now.  I won't get into developing other concurrent AI issues after repeated glutenings.   Your doctor does not sound celiac-savvy.  Not that all GIs need to be experts, but they should keep up on research and follow protocol as recommended by the GI Association.  Consider a new GI. Can you do this diet without a diagnosis?  Yes.  While I was formally diagnosed four years ago, my hubby went gluten free 16 years ago per the poor advice of two medical doctors.  He refuses to do a challenge now because we know that gluten makes him sick.  So, he is just as careful as I am.   Consider getting another family member tested who may have celiac symptoms.  This is a genetic related disease.   The pill camera can catch celiac disease, but not always because villi are microscopic.  I imagine it mostly catches severe damage that affects the actual structure of the small intestine.   At least you might have ruled out Crohn's.  The GI might have missed areas if damaged.  The small intestine is a very long tube and if stretched out larger than a tennis court!  Get all copies of your test results from your doctor.  You need to keep advocating and having those records in your possession is priceless.  Take care.  
    • I suffered with rashes on my elbows knees and has of spine for years. The itching was intense and made me totally miserable. Rash started as large blisters which eventually popped and scabbed over.. Doctor prescribed every cream known to man and none worked. In the end I saw a new doctor who knew immediately what it was. One visit to the hospital and biopsies on the rash area revealed DH. I am registered Coeliac and now never eat  gluten and I never have problems.   
    • No, my kitchen is NOT Celiac safe/friendly. Although I do maintain a gluten free diet and use only gluten free products in my cooking/backing, there is high risk for cross contamination with toaster use, other appliances, butters, sauces, etc. Same goes for the rarer occasion that I'll dine out - I eat gluten free & only from a gluten free menu, but I don't only eat at places with Celiac friendly kitchens/prep space.   From what I can remember, I'd like to say I have been woken up with issues just a few times though, and not anything significant. I won't dispute the probability I have IBS, however, I think there is more going on, too.     Thank you for your kind words & well wishes.
    • I run into many parents who are in quite a quandary about instituting a gluten-free diet for their child. A typical scenario is that one of the parents is gluten intolerant and is highly suspicious that their child is as well. Due to the child being 'relatively healthy' the non-gluten intolerant spouse suggests that the child be able to 'live a little' and enjoy the cake and pizza that is so prevalent during children's parties and sporting events. View the full article
    • I am so sorry you have been suffering so much for so long. Yes you do need to eating gluten for celiac related testing. There is a lot we have to do to be safe. While gluten free have you been using things like a seperate toaster, dedicated condiments, butters,jams etc? have you been baking with wheat flour for others? What is your diet typically like? I ask because your doctor is woefully ignorant of the diagnosis process for celiac so he may also not have told you what you need to do to be safe.  The Newbie 101 thread at the top of the Coping section has a lot of info. I hope you get some answers soon. One more thing. Are you being woken up at night with D? That is a good sign that you don't have IBS. IBS D hits when folks are awake.
  • Upcoming Events