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

What Else Are They Missing?


bartfull

Recommended Posts

bartfull Rising Star

I have read story after story on this site about doctors who know nothing about celiac. Now, I know that doctors, like teachers and just about anyone else in technical fields, must partake in continuing education. And celiac has been such a "hot topic" for a while now. Yet so many doctors STILL know nothing about it.

 

I'm just wondering, if they haven't updated their learning on celiac, what else are they still ignorant about? How could I trust a doctor who knows nothing about celiac to treat my other ailments? If these doctors are still stuck in the twentieth century, I'm sure they can't provide the lastest and best treatments for anything!  

 

End of rant.


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



Celiac.com Sponsor (A8-M):



SkyBlue4 Apprentice

I hear you! I just went through a discussion with my kids' pediatrician that left me angry. He refuses to test my children for celiac disease because ~wait for it~ they don't suffer with diarrhea.  <_<

frieze Community Regular

make sure you get that refusal in writing..

IrishHeart Veteran

I hear you! I just went through a discussion with my kids' pediatrician that left me angry. He refuses to test my children for celiac disease because ~wait for it~ they don't suffer with diarrhea.  <_<

That's absurd. Relatives of diagnosed celiacs should be screened. In fact, they should be tested every few years.

Bring him the latest info from the U of Chicago Celiac research center that says this is HIGHLY recommended.

Or get a new pediatrician.  IMO

SkyBlue4 Apprentice

Or get a new pediatrician.

I'm thinking about it but my options are limited and not necessarily better.

This morning I was able to get the office to agree to test one of my kids (b/c she's always constipated) but I still have to fight for my other kids b/c they don't present with "symptoms". What a joke. 

kwylee Apprentice

Bartfull, your rant is right on the money, totally agree.  You call to mind that the days are over where doctors are panoptically lauded as some sort of information gods. Yep, I grew up that way back in the 60's - your medical doctor had all the answers and whatever they said was taken as gospel. Until I saw enough of them in the 21st century who denied simple logic or brushed off my intelligent observations about my own body or what I was experiencing, merely because they had not read the symptom or disease in a medical book that could have been written eons prior.  Or worse, because they were afraid to go against the medical establishment.  After countless visits to the doctor without answers, I made the gluten connection on my own, and then pursued testing.  While in the meantime, doctors were still stuck on the useless "stress, hormones or menopause" schtick some go to when they can't admit they haven't a clue.

 

But hey, I'm not anti-doctor.  I am convinced there are good ones out there, the best of which no longer subscribe to their own hubris as substitute for effective medical detective work that keeps up with the times.  Those are the gems.  And hypochondria aside, it's up to us to know to keep looking when our gut tells us the doctor may be totally off-base.  While I understand that doing your own internet research on health symptoms can yield cholera in the face of only a rapid heart rate, we should get used to the garbage-in/garbage-out method of taking responsibility for our own health and well-being, and get yourself to a humble doctor when you need a similar resource....or to stitch you up when you split your lip.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748

    AlissaW
    Newest Member
    AlissaW
    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 black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.