• 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.

Might Skip The Biopsy... Thoughts?
0

6 posts in this topic

Okay, so if you missed my story earlier, I have a long list of typical celiac symptoms, including depression, severe cramps, constipation, bloating, major constant gas, etc. (See "Should I Re-Test", same thread, for the whole story). I have weight gain instead of loss, but my stomach is firm to the touch as if constantly bloated. Blood tests came up negative (still waiting on my copy in the mail), so I went to a GI last week.

I am about to just give up on doctors entirely. I sat there for over an hour explaining all my symptoms to the nurse, then again to the PA. Then the doctor walks in and the first thing he says is "I'm not really going to look at your other symptoms, just the GI symptoms." He then tells me he's 95% sure I am not celiac and diagnosis me with IBS. He does not want to do any more testing, just meds and diet changes.

Shouldn't all symptoms be considered when making a diagnosis??

I insisted on the biopsy, but his office has not called me back yet to schedule it, and now I'm thinking I should just save my money (out of vacation and sick time for work already too) and just see a dietician and make the change to gluten-free. I haven't started the diet yet because I have an allergy test scheduled for the 19th. My boyfriend says I should get the biospy only after the allergy test, to see if I come up as allergic or sensitive to gluten, but to me it seems like a moot point.

Any thoughts on if I should proceed with medical testing or just trust my instincts on this?

0

Share this post


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


Well that is what one could call a wasted hour :P Anyone can pull the old IBS diagnosis out of a hat blindfold!! But there's not a soul here on this board who would do that to you. He was basically telling you he just was not interested.

Yes, of course all symptoms should be considered, but they very seldom are. Often you are rationed to the number of symptoms you can talk about in 15 minutes or less (and this includes the physical examination and the writing of prescriptions for conditions you do not have because he has not spent enough time finding out what you do have. We have our charming HMO's and time and efficiency study experts and bottom line people to thank for that.

It is certainly possible to have positive biopsy and negative blood, but more common to find both of them negative as in non-celiac gluten intolerance, for which the only test is to try the diet and see if it resolves the symptoms. If it does, BINGO! If it doesn't, time for further exploration. That's my take on it unless there is a compelling reason for an official diagnosis of something.

1

Share this post


Link to post
Share on other sites

With an idiot GI doctor like yours, I wouldn't bother with a biopsy. He probably doesn't know how many biopsies to take, where to take them from, and how to read the pathology afterwards. Besides, he's convinced you don't have celiac....so surely he'll find a way to match the test findings to his already lame diagnosis.

I'd simply switch to a gluten-free diet if I were you. You're a lot smarter than the doctor--go with your guts on this one.

1

Share this post


Link to post
Share on other sites

I agree with Rosetapper. I also had a negative blood test and no biopsy done, and my GI doc said he "presumes I do not have celiac, but am just sensitive to gluten". Anyway the treatment is the same... I do go through periods where I wish I knew for sure since intolerance does not necessarily damage the villi, but celiac does and I don't want to predispose myself to cancer. (in other words I would be a little more strict with the gluten-free diet if I knew for sure).

Oh well. I'm not about the gluten myself for 2 months just to get a biopsy done that may or may not be conclusive...

1

Share this post


Link to post
Share on other sites

If you are comfortable going gluten-free without a celiac diagnosis, i say go for it. I have half a dozen friends who are gluten-free due to non-celiac gluten intolerance and to treat other autoimmune problems. They don't have a specific, doctor given diagnosis either but they sure do feel better now.

On the other hand, if you need a diagnosis for insurance or financial reasons, you might want to do the biopsy. The biopsy might also be helpful to determine if something else is the cause of your symptoms (which are the same as mine except for the gas).

I would do the biopsy as soon as you can if you decide that is the route to go. The longer you wait, the more discomfort you have to endure while eating gluten. I don't think you need to be eating gluten for sensitivity testing, but 'm not sure of that.

It's a very personal decision. I wish you the best in what ever you decide.

1

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you everyone!! I think an allergy test should be sufficient, then I'll be going on to the gluten-free diet. Bought a cookbook for gluten-free comfort foods this weekend, so I'm ready! :) Thank you all for your advice. I am glad to be here!

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
      106,766
    • Total Posts
      932,288
  • Member Statistics

    • Total Members
      64,237
    • Most Online
      3,093

    Newest Member
    Pinkie
    Joined
  • Popular Now

  • Topics

  • Posts

    • Those cooked eggs are just fine!  If you want to insure that the frig is colder, add a bucket of ice.  Is used to travel without the benefit of a frig.  I just used a couple of ice buckets to chill milk, or whatever.  It worked.  If you want a hot meal, try Udi's frozen meals.   Not the best, but good for hotel cooking.  Several lunch meats are gluten free too at the market.  
    • I clicked it and got re-directed to c.com  but this time I got the article.  I shouldn't copy the whole thing but here is the conclusion - "In conclusion, in the right clinical setting, symptomatic celiac disease is treatable, but we do not recommend population screening. Further data on the clinical impact of a glutenfree diet on the microbiome and the long-term health consequences in those without celiac disease are needed. The entity NCGS closely overlaps with the functional gastrointestinal disorders, and new evidence suggests that at least in some gluten may not be the culprit despite symptom improvement after beginning a gluten-free diet.We do not recommend a lifelong gluten-free diet for individuals without celiac disease."   Celiac Disease and Nonceliac Gluten or Wheat Sensitivity The Risks and Benefits of Diagnosis Nicholas J. Talley, MD (NSW), PhD (Syd), FRACP; Marjorie M. Walker, BMedSci, BMBS, FRCPath, FRCPA
    • Thanks for the responses. As far as genetic testing goes I wasn't offered that as an option. They ran several labs and everything was normal. We were waiting on celiac to come back and when it did the one marker was high. Not sure who I would talk to about having a genetic test. I did a genesight test for medications and it showed folic acid was questionable. But nothing pertaining to this. Endoscopy is scheduled for Friday. 
    • Refractory celiac disease (RCD) is a rare manifestation of celiac disease that is difficult to treat, and often results in death from enteropathy-associated T-cell lymphoma.Doctors looking to treat RCD have found very limited success with a number of immunosuppressive medications (IMs), including azathioprine, systemic corticosteroids, or regular budesonide. A team of researchers at the Mayo Clinic recently set out to assess open-capsule budesonide (OB) treatment on RCD patients, including those who saw no improvement with previous IM treatments. View the full article
    • I'm on my first business trip since being diagnosed. I brought all kinds of food with me, as I'm in a Hilton hotel and I have a fridge and microwave in my room. I brought yogurt, cheese, eggs, fruit, bread, peanut butter, Terra sweet potato chips, Popcorn Indiana popcorn, snow peas. Does anyone have tips for me? Ideas for what I can eat, aside the things I mentioned? I made some hard boiled eggs before I left home but the fridge in my room isn't great and I don't know how cold they've been overnight so I'm not sure I'll eat them. I don't know how cold eggs need to stay. I'm in a small town but there are supermarkets. I'm just limited because I don't have a stove or much cooking space. 
  • Upcoming Events