Jump to content
  • 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

Frustration Of Bad Advice


GlutenedGuy

Recommended Posts

GlutenedGuy Newbie

Hi Everyone.

After being diagnosed with celiac disease a few weeks ago I decided to make a trip to the pharmacist to see if there was an over the counter celiac disease blood test that I could recommend to my blood relatives to screen for celiac disease. I was told the following:

1


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast
Hi Everyone.

After being diagnosed with celiac disease a few weeks ago I decided to make a trip to the pharmacist to see if there was an over the counter celiac disease blood test that I could recommend to my blood relatives to screen for celiac disease. I was told the following:

1

Egaeus Newbie
Hi Everyone.

After being diagnosed with celiac disease a few weeks ago I decided to make a trip to the pharmacist to see if there was an over the counter celiac disease blood test that I could recommend to my blood relatives to screen for celiac disease. I was told the following:

1 – “Because we live in Nova Scotia and Celiac’s is not that common in our area I would not worry about being tested.” At this point I had not told her that I had already been diagnosed.

2 – After I told her that I had been diagnosed I was told “You should test yourself every few years to make sure that you still have Celiac’s Disease because it is something that can go away over time and you may be able to return to your normal diet”.

My main concern is what other “professionals” have given me bad advice. I can feel that I still have some source of gluten in my diet so I guess this means back to square 1 trying to figure out what it is. :angry:

GG

You're worried about bad advice? And you're here?

mushroom Proficient
You're worried about bad advice? And you're here?

I have found less bad advice here than anywhere else I've been. Here, you are just getting the opinions of those who have been here, done that. And most of them k.n.o.w!! And you're here??? :huh:

ravenwoodglass Mentor
You're worried about bad advice? And you're here?

This board has much less 'bad' advice than any other board I have seen. This board has a lot of knowledge to it and people who have struggled sometimes for many years to figure out what has caused their problems. Many of us have done a great deal of research in peer reviewed materials and share that research both in words and in links to the articles. This is often research that our doctors have 'missed'. Folks should always build their own knowledge base and this board is a great place to get help in doing just that.

Egaeus Newbie
This board has much less 'bad' advice than any other board I have seen. This board has a lot of knowledge to it and people who have struggled sometimes for many years to figure out what has caused their problems. Many of us have done a great deal of research in peer reviewed materials and share that research both in words and in links to the articles. This is often research that our doctors have 'missed'. Folks should always build their own knowledge base and this board is a great place to get help in doing just that.

I stopped by yesterday after getting the latest email from Mike Adams. I was appalled at the abundance of alarmist garbage and pseudoscience being promoted. I was curious as to just how bad the problem was. I saw almost nothing but bad advice. Acupuncture for allergies, recommendations of NDs, integrative medicine. Yes, that's all Bad Advice.

What I didn't see was any peer-reviewed anything. Just credulous people giving advice to other credulous people. It drives me crazy, and it doesn't do anything to help people who are dealing with celiac disease except give them false hope, and have them waste their money on things like sublingual allergy drops.

You want good advice? Here's some:

Dealing with any food sensitivity is easy. Learn to cook. Don't eat at restaurants. Learn how to identify trigger foods by using an elimination diet. Get a gastroenterologist who cares enough to help you figure out what your problems are.

Don't rely on a pharmacist for advice. Don't waste your money on alternative(s to) medicine. It's bunk. If it has been tested and shown to work, then it's medicine. Otherwise, it's a cup of tea and a nice massage. However, there are varying degrees of competence in any field, so if you GP doesn't know anything about celiac disease, find one that does.

Don't trust anecdotes, no matter how many you hear. Anecdotes, by their self-selected nature, are a very poor source of information. Learn how to read a research paper. There's an excellent article about it on sciencebasedmedicine.org, but they're having technical problems at the moment. Above all, remember that "the first rule [of scientific integrity] is that you should not fool yourself, and you are the easiest person to fool."

lovegrov Collaborator
You're worried about bad advice? And you're here?

Pretty full of yourself, aren't you? BTW, thanks for all that great advice and help you're given since 2007 -- all six posts worth.

richard


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
Don't rely on a pharmacist for advice. Don't waste your money on alternative(s to) medicine. It's bunk. If it has been tested and shown to work, then it's medicine. Otherwise, it's a cup of tea and a nice massage. However, there are varying degrees of competence in any field, so if you GP doesn't know anything about celiac disease, find one that does.

Unfortunately, there is not money, time, and interest to test everything. So, while thousands of years of anecdotal evidence may show that something works (yoga on depression and back pain, for instance (1)), it hasn't been studied. And when there is finally some small amount of money to study something "alternative", it is often (certainly not always) shown to be effective (St. John's Wort on mild to moderate depression, for instance (2)). And in some cases, while the answer isn't clear cut, there is evidence to suggest that it's at least not bunk (acupuncture for fibromyalgia and some elements of pregnancy, for instance (3)).

And after all the reading that I've had to do about "medicine" in a healthy pregnancy, well... I can assure you that even the western medical community often ignores it's own studies about the methods they use being NOT beneficial (episiotomies, epidurals, val salva maneuver, lithotomy position, time restrictions, food/beverage restrictions, etc. (4)) as evidenced by DIRECT contradictions between outcomes in studies and advice given from the "medical professional".

1, 2, 3 - References about on simple pubmed searches, which I presume, given the tone of your post, you know how to do. I am not going to take the hour it would take to link even half of them.

4 - way too many references to list here, though "The Thinking Woman's Guide to Labor" is a good printed version, and the Cochran Database is a good online search option that does thorough metaanalysis of data in the published (and occasionally unpublished) realm.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    5. - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,830
    • Most Online (within 30 mins)
      7,748

    WyoGal
    Newest Member
    WyoGal
    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

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.