• 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.

Confusing Comment From Gastro
0

5 posts in this topic

Recommended Posts

Eclara    1

I had a negative biopsy last December after an 8 week gluten trial that triggered a whole host of new symptoms for me. I went to see a new gastro last week because I'm still having so much stomach pain and he was the absolute worst. He made some confusing comments to me that I was hoping for some insight on.

 

Me: "What should I do about the stomach pain? I never, ever had upper stomach problems before the gluten trial."

Him: "Well, you absolutely don't have celiac but you've changed the way your digestive system works."

Me: "What?"

Him: "Maybe you just can't eat quite as much gluten or other foods as other people can."

 

He said a lot of ridiculous things during our appointment and went on to diagnose me with IBS (shocking!), but I was really baffled by the "you've changed your digestive system" comment. Is that a legitimate claim? What does it mean?? I couldn't get him to clarify...

Share this post


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


emaegf    7

No not a legitimate claim. He couldn't clarify because it was BS, he didn't know what he was talking about. It's common for a doctor to diagnosis IBS when it's really Celiac but the tests come out negative. Diagnosis is three fold for Celiac and all steps must be considered before making a diagnosis. Testing should occur BEFORE patient does even a short gluten free trial or false negatives can and do result. Steps for testing for Celiac 1- Blood testing checks for antibodies in your blood;  2- Intestinal Biopsy; 3- Gluten free diet trial. If 1 and 2 are negative but patient responds to diet trial patient could be Celiac but test results are false negative (happens a lot), patient could be nonCeliac gluten intolerant, or gluten sensitive. All require the same treatment - a gluten free diet. Do tests yet for the nonCeliac gluten intolerance but sensitivity may show up on allergy testing.

 

You went gluten free for 8 weeks before doing testing? You got inaccurate results. Or you ate gluten for 8 weeks before testing?  If you'd been gluten free for a while then wanted to do testing you need to eat gluten daily for 12 weeks minimum before testing for it to be accurate. And even then your results could be false negative.

 

If you did well off gluten go back off and see how you're doing. If you were gluten free then ate gluten again for the testing you did damage to your system and need to reheal again. Some have luck while staying gluten free they include probiotics daily, tonic water seems to help for the stomach problems, eliminate dairy and oats even gluten free ones for a while so your system can heal then reintroduce them in six months. And stay away from clueless doctors.

Share this post


Link to post
Share on other sites
Brandiwine    16

Dud you have any improvement on the GFD? You may still have a gluten intolerance and now gluten-free are still consuming foods that bother you. Dairy is usually at the too of the list, but we all have different issues with different foods.

No I don't think you "changed how your digestive system works" whatever that means! How do these people get through med school?!

Share this post


Link to post
Share on other sites
Eclara    1

Thank you for your replies! I thought it was an odd thing for him to say.

 

I probably should have been more specific. I am completely gluten-free! I was gluten-lite (not outright eating gluten but not avoiding cc and still consuming questionable foods like soy sauce) for two years before the gluten challenge, during which I ate a loooot of gluten and got veeery sick. It's been about five months completely gluten-free since then and my symptoms have improved a lot, especially when I took out dairy, soy, fructose and grains. I still suffer from stomach pain and unhappy bowel movements that interfere with my quality of life a lot and I have trouble finding things I can eat, which is why I went in to see if a different gastro had any other recommendations for me.

 

Apart from suggesting I had somehow modified my intestines (and have I considered going on anti-depressants?? He HIGHLY recommends I talk to my PCP about that!!), he was not very helpful.

Share this post


Link to post
Share on other sites
Brandiwine    16

I would find a better Dr. Some one you trust and who takes you seriously.

Share this post


Link to post
Share on other sites
Ads by Google:


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
      107,912
    • Total Posts
      938,647
  • Member Statistics

    • Total Members
      65,835
    • Most Online
      3,093

    Newest Member
    Shirley Ann
    Joined
  • Popular Now

  • Topics

  • Posts

    • It's unfair to make such a general statement about ER's and hospitals.  Unfortunately, I've been to the ER several times and hospitalized three times in the past few years.  The staff took me seriously when I told them I had celiac.  Popsicles and drinks were checked for gluten, and a good laugh took place when a nurse came in to remove the cheesecake that was brought to me when the staff found out it was our anniversary. Dietary services were called and Lucy's gluten free cookies were given to me instead. Once admitted to the hospital, a dietician was sent to my room to discuss meals and she checked back with me a couple of times.  The only mistake made was the dairy free protein shakes that were delivered daily and left untouched.  When dietary called my room to ask why I wasn't drinking them, my husband had to inform them to read the label as it was clearly labeled containing milk products.  
    • Here is more information about testing family members. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/  
    • Hello, I have been dealing with a mysterious rash for the past ten years that I am slowly beginning to think is DH.  It comes and goes, is itchy as all get out and shows up in all the areas that DH appears (elbows, back, torso, knees and base of neck).  It comes and goes over the years which has thrown me a little, but from what I can tell it can happen with DH? Anyways I went to an allergist, he was a jerk and told me it was not an allergy and to get a biopsy (which was done ten years ago when it first happened, but okay).  Me being at my wits end I called up a local dermatologist and got an appt for a biopsy.  I went in armed and ready with the info I have read here about the correct biopsy etc.  Well of course the dermatologist wouldn't give me the time of day Would not listen to the past history of the rash or look at photos, was in and out within five minutes and insisted on a scratch biopsy instead of a punch biopsy.  She simply said she would be highly surprised if it was DH.  I try to respect doctors so I pushed but I did not push hard enough.  She did the scratch biopsy against my recommendations.  So that brings us to today when I received a message that the biopsy showed an allergy and that they could either give me an order of prednisone or refer me to an allergist.  Now if you remember my local allergist sent me away and said it wasn't an allergy.  I am so done and I refuse to just keep medicating myself, I need to find the root cause.   So I have a physical tomorrow night with my regular doctor and I am tempted to just insist on a punch biopsy next to the rash for a proper biopsy.  Couple questions for you guys though.  If a scratch biopsy came back as an allergy could that possibly lead to gluten allergy (I know it doesn't prove that, but could it mean it could be gluten?).  Should I keep pushing for a punch biopsy? I am planning to go gluten free after this appointment anyways but I keep eating it to try and get a proper diagnosis.  I feel I should get a proper diagnosis, one to keep me on track, one to make sure that is what it is and also I did try gluten free for 30 days before and it didn't seem to help the rash.  But from what I have read that could have been to short of a time.  I feel I need a proper diagnosis to help me stay with it and keep on the right path.   Lastly, the rash definitely went through stages and is at an end stage, still itches like crazy but isn't as bad looking as when it started.  Does it matter when you take the biopsy as long as there is a rash it will potentially show?  I hope all this makes sense.  I am tired of being told I am crazy from doctors.  If they could find the solution I wouldn't be looking myself.  I would be very happy to be proved wrong but so far that has not happened and I just want an answer! So tired of being itchy!! Thank you very much for your help and listening!!!
    • I'm sorry I don't have much advice for you but I can relate in some ways. I've took generic Zoloft for about 10 years. When I was diagnosed celiac I worried about and researched my medications and am confident that they are safe for me. I have spent many years fighting depression and anxiety and have tried different meds but finally accepted I need the Zoloft and Xanax probably for life. I will say that most of our serotonin is in our stomachs and any time I switched meds or had to withdrawal my stomach issues were the worst. So please be careful with switching or stopping ( never cold turkey) any psychiatric medication. Also you could be sensitive to other grains. Gluten free bread does not like me. Also so far I have not found any one in the medical field that takes celiac seriously. I have been laughed at even and most don't have a clue what problems gluten does to us mentally and physically.
    • When does it matter if its gluten-free? ( likely is)  but she isn't eating it. She isn't 2 and put her fingers and paint brush in her mouth.  Are you or your son going to lick the glass?  Of course not.    Any paint can be be scraped off glass with a razor blade.  Some people use dry erase markers
  • Upcoming Events