Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Guidelines For Gastroenterologists


mmaccartney

Recommended Posts

mmaccartney Explorer

I saw my GI doc yesterday, who at first didn't know much about celiac, but has been doing some research and educating himself. I give him some credit, he is now testing many more people for celiac after my mystery case! He mentioned 15 people last week he tested whereas before me he rarely tested anyone!!!

Anyhow, he gave me info on a guidline published by the World Gastroenterology Organisation.

Open Original Shared Link

Click on the "Practice Guidelines" in the left menu bar, and then the Celiac link will be listed in the table to the right!

The Celiac Guidlines are available in several languages. There is even what they call "Graded evidence" that links to Meta-analyses, Systematic reviews, Practice guidelines, Clinical Trials, and other useful reading.

This should be considered a legitimate source for GI docs. Perhaps some information to print and take to those ones out there that still think Celiac is extermely rare, and that we don't actually have it!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

That's really good. I have gotten to the point that I take information that I have printed from the internet (all valid research) and hand them to my doctors. They ask me if that's for them, and I say "yes". I highlight areas that I want them to read, and I point it out to them -- and have them read it while I'm there. At least, that way, for a small moment in time they're thinking about it! It's to the point that one of my neuro docs has gotten Peter Green's book! He has started testing for Celiac in his ataxia patients -- he has caught it early in two different ones, and they are much more functional than I am . . . one doesn't even have to walk with a walker! Thanks for the heads up . . . . Lynne

JenAnderson Rookie

I have read several posts where people have referred to Green's book, and I was wondering what the title is. The only books I have read have been by Jax Peters Lowell.

jerseyangel Proficient
I have read several posts where people have referred to Green's book, and I was wondering what the title is. The only books I have read have been by Jax Peters Lowell.

It's called--"Celiac Disease--A Hidden Epidemic". It's by Peter H.R. Green, MD and Rory Jones. :)

mamaw Community Regular

Isn't it a shame that these doctors make millions and we have to provide them the correct info about celiac's!!!! Something doesn't seem right here...... Maybe they should pay us with a free visit for the great info we provide to them......I agree alot are brain dead when it comes to celiac's. Most of all this is really sad.......

mamaw

mmaccartney Explorer
Isn't it a shame that these doctors make millions and we have to provide them the correct info about celiac's!!!! Something doesn't seem right here...... Maybe they should pay us with a free visit for the great info we provide to them......I agree alot are brain dead when it comes to celiac's. Most of all this is really sad.......

I do agree, but I do feel good that at least this doc is more aware now, and is now screening more people for Celiac then he used to. He has ALOT of patients, so the impact will be there!

I'll be curious when I see him again in August how many people he has had come up positive!

jerseyangel Proficient
Isn't it a shame that these doctors make millions and we have to provide them the correct info about celiac's!!!! Something doesn't seem right here...... Maybe they should pay us with a free visit for the great info we provide to them......I agree alot are brain dead when it comes to celiac's. Most of all this is really sad.......

mamaw

mamaw--You said a mouthful there! It's a darn shame :angry:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



corinne Apprentice

Finally, something to show my doc. I actually have collagenous colitis. My mother is celiac. In spite of many people with collagenous colitis responding to a gluten free diet, my doc insists that collagenous colitis is not related to celiac and that anti-diarrheal meds or steroids are the best treatment. This article clearly states that collagenous colitis is related to celiac disease.

elye Community Regular

How's this for scary...we all know the connection between various autoimmune disorders, particulary type one diabetes and celiac disease. My wonderful endocrinologist who I have had for twenty-five years looked quite puzzled last summer when I told him my GP had run the blood work for celiac because my iron was low, and that it came back positive so I was going for the endoscope. He asked if I had any "real" symptoms of gluten intolerance, like bloating, abdomonal pain, diarrhea. When I said no, he scoffed, "well, you do not have it then. It is a very rare condition, and if you have been feeling well, then it just doesn't make sense". HA! And this is a DIABETES specialist, who has never known the connection between celiac and diabetes!! (fifteen percent of all type ones also have celiac disease, or will). Unbelievable....

So, I visit him next month and will take him a copy of Dangerous Grains. WAKE UP, DOCS! AND ESPECIALLY ALL YOU SPECIALISTS!!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...