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

Just Lucky Or Are The Doctors Coming Around?


OptimisticMom42

Recommended Posts

OptimisticMom42 Apprentice

Good Morning All,

I'm wondering if anyone else has had an experience like the one I had this morning. I took my 18yr old son into our local Dr.'s office to request a letter stating that DS needs to maintain a gluten free diet. I took two books and a ziplock container of old pill bottles to prove our case. The P.A. said, "No need, The Dr. already suspected celiacs on your last appointment. I'll have the letter ready for you in about 72 hours." No fuss, no need for further testing.

My own diagnosis was just as seemless even though I had a different Dr. He asked why I thought I might have it. I explained, he confirmed. No fuss, no further testing.

Is this getting easier or am I missing something?

After reading "Too Good to be True? Nutrients Quiet the Unquiet Brain" by David Moyer, LCSW, I was really worried. If you haven't read it, the author's son and father were both bi-polar and suspected celiacs. Each time that either of them were institutionalized they would be taken off their medicine and gluten free diet. My son is bi-polar and gluten gives him "D". He has been hospitalized once and jailed twice (once for being violent during a manic episode, once for driving home after drinking at a senior party). All three times he was fed a high gluten diet and was very sick. So I spoke with his lawyer, a correctional officer and now our G.P.'s office and all have said that a letter stating that a gluten free diet must be maintained to prevent chronic "D" is all that we needed to get DS (still dear to me dispite his illness) a special diet tray if he should be institutionalized again. There are a lot of successful bi-polar people in this world and I hope that my son will be one of those but should his life be a struggle I intend to protect him to the best of my ability.

If any of you have a been through this and have cautionary tales you think I need to hear please post them. Thank you


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



Celiac.com Sponsor (A8-M):



freeda Newbie
Good Morning All,

I'm wondering if anyone else has had an experience like the one I had this morning. I took my 18yr old son into our local Dr.'s office to request a letter stating that DS needs to maintain a gluten free diet. I took two books and a ziplock container of old pill bottles to prove our case. The P.A. said, "No need, The Dr. already suspected celiacs on your last appointment. I'll have the letter ready for you in about 72 hours." No fuss, no need for further testing.

My own diagnosis was just as seemless even though I had a different Dr. He asked why I thought I might have it. I explained, he confirmed. No fuss, no further testing.

Is this getting easier or am I missing something?

My doc is also an agreeable sort. He'll give me any tests, any medicines I think will be productive as long as there's no reason not to. He trusts me and my ability to research and decide what direction I want my care to take. I love him. Fortunately, I also have good insurance.

However, sometimes I wish that it wasn't so self-directed. It often feels like I'm the one doing all the work and he's the one getting all the money! But I'll take the deal I've got.... it's not like I can write my own lab orders.

Rondar2001 Apprentice

I think doctors are starting to improve. We have one of the city's top pediatricians for my daughter and he admitted to us when she was being tested, that even 2 years before that he never would have thought to test her for Celiac. At her last appointment I mentioned that my tip off that she has been glutened is her sleep walking, he replied that he found it facinating and because he knows us so well, he knew that this was a true response. He also mentioned that most other doctors would have brushed this off as our imagination as it isn't a typical reaction.

OptimisticMom42 Apprentice

Thank you Freeda and Rondar for responding. I'm glad to hear that the word is getting out and that dr's are responding positively. It gives me hope that my son's illness will be recognised and treated appropriately should he ever be placed in a hospital or correctional setting again. No one should have to be mentally ill and have the runs!

I worked as a guard for several years in an institution that housed over 500 inmates. I don't recall even one being on a gluten free diet. Statistically there should have been 4 or 5 at all times. The inmates who did receive special diets were given milk, bread, lunch meat and condiments before bed for acid reflux.

  • 2 weeks later...
TotalKnowledge Apprentice

I think you are just lucky. After asking my doctor about testing, and opting to try gluten free, he seems completely unimpressed with my improved condition and told me I should still get tested to "make sure" since a gluten free diet is more expensive and hard to follow.

<_<

Serversymptoms Contributor

Well I haven't met one doctor like such in my city, which has one of the worst health care systems in my opinion. They are doing little about my symptoms, and completely over look everything and are only looking at anxiety and depression. I went from a counsler, to phycologist, and not I'm being referred to a physiatrist... I confirm that I do have candida, and think I also may have a thyroid problem along with other issues due to my intestine being damage, like malnutrition. It's all horrible since I expected this to be taken care of by now, though I do have some relief knowing that for college and future after I plan to reside elsewhere.

Also self diagnosed as celiac

mushroom Proficient

There is a distinct subset of doctors (mostly male) who believe that 99% of the problems which bring a woman to a doctor's office are in her head. I even had a female physician who belonged to this group. You can't do anything with them, just avoid them.


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



Celiac.com Sponsor (A8-M):



beanpot Apprentice

I so hope the doctors are coming around! I'm not sure if my doctor has improved because I'm avoiding my yearly check-up. I went gluten free in March and I'm dreading being looked at with amusement when I tell him. I live in Boston which is supposedly the center for medical resources and progress, and yet about celiac I have always encountered paternalistic attitudes. I have it in my family, have symptoms and still in the past they always resisted the idea. I insisted on the blood test years ago, but it was negative, I never actually tried the diet until this year. I have made my own mind up now, based on my response to the diet.

Best of luck to you with your son, that sounds heartbreakingly difficult. I have 2 teenage sons myself.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.