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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,984
    • Most Online (within 30 mins)
      7,748

    MARYANN RICHARDS
    Newest Member
    MARYANN RICHARDS
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.