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

Frustrated


minton

Recommended Posts

minton Contributor

I am by no means a certified doctor, but I am also not an idiot. I have an eye appointment on Monday. Both my dentist and my regular doctor have requested that I get tested for Sjorgren's, which of course, my eye doctor could easily run the eye tests for at this appointment.

A little background info: I am 19 years old and have had over 80 dental fillings. At the moment, I am in the process of having ALL of my teeth replaced with crowns because if I don't do it NOW, I'll need dentures by time I'm 23. My teeth are horribly rotten, from a permanent dry mouth and from lack of nutrients prior to celiac diagnosis. I have dry itchy eyes all the time and wake up with the most disgusting thick filmy goop covering my eyes each morning. I have also suffered from vaginal dryness for at least 2 years. My aunt was also diagnosed with Sjogren's last year. Considering these symptoms, both doctors think Sjogren's is the likely culprit and want the stupid tests done.

Like any good patient, I called my eye doctor ahead of time and let her know that these tests were being requested. I also asked of course whether or not I would be able to drive myself home after these tests and all those safety questions. I got the brush off from my eye doctor though. She basically told me that while its fine that the other doctors want her to run the tests, she doesn't know if she will bother because the disease is so rare. When I offered to get her in touch with the two other doctors, the response was "Oh I'm too busy for all of that." I hope she reserves time on monday to argue with me...cuz if she decides not to bother running the tests, I'll get the doctors on the phone and argue with the eye doctor all day until she backs down and does the tests.

I don't know if I would be as cheesed off if it was just a whim of mine to ask for the tests, but I'm livid that she brushed off the tests after 2 other medical professionals ordered me to get them. I have been using the same eye doctor since I was 2 years old, and that fact is probably the only reason I'm not hunting for a new eye doctor. My mom is livid at the way this is being handled too, and she has a calmer disposition than I do.

This is not the first doctor that has acted this way towards me...I had a pediatrician tell me after I was diagnosed celiac that the disease DIDN'T exist, just to cite another example. Don't get me wrong, I like my regular doctor, the dentist I could do without, but she does her work well. But after my numerous "ignorant doctor" experiences, I'm starting to wonder...are these people really working for our best interest at all?! Some of them have even made me wonder if their degrees are fake. I'm getting so frustrated with doctors....


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

I know how you feel. I sometimes wonder what in the world are going to them for? I'm starting to think it is our perception of them though. We think they should be educated on any condition we throw at them, we think they should research any set of symptoms until the light bulb comes on and the dx reveals itself, we think they should be digging for the core problem of any symptom and not just giving us something to deal with the side affects of it. I don't think dr's look at treating us that way at all and I don't think they are taught to do so either.

It's a shame we have to shop around to dr after dr to find someone who cares.

When it was suggested my friend might have Sjorgrens, she was sent to an arthritis specialist not an eye dr.

homemaker Enthusiast

I also know how you feel...(I also feel a rant coming on...please forgive me).....I also have been treated very poorly by physicians...I also think that ang1e0251 is right however...We do expect our Dr's to treat us differently than they really do...not that our expectations are a bad thing....Unfortunately they are not taught that way in medical school...it seems like so many of our physicians are like walking robots under the influence of managed care...They have a line of patients in the waiting room, they are overbooked because many MD's get extra cash bonus for seeing more patients...they follow strict protocols which limit their ability to "get to the bottom of what is causing symptoms"...a.k.a. REAL diagnosing...

It is us, The Patients who have to scream loudly and be the "squeaky wheel" to get our medical needs met...we have to be advocates for ourselves...

I have to continually remind myself that I am the owner of my own body....I can make decisions that are right for me...

I am the one that employs my Doctor not the other way around....But it is hard...when as a patient you feel judged and

minimized or looked upon as some hypochondriac because they don't really know what is going on....

Don't get me wrong we need physicians...but somehow we must be confident in ourselves...which is not easy.....

as we sit in a cold examination room, with a humiliating patient gown, waiting for some harried Doc to come in and dismiss

your symptoms...give you a script and move on to the next patient not unlike a fast food restaurant line...

mushroom Proficient

I think that part of the problem with medical school training is that doctors are not trained to think of their patients as thinking human beings! They are told to "go see the gall bladder in Room 203", or "check the lungs in Room 99" without a thought that there are living, thinking, feeling human beings attached to these organs who have their own take on what is going on with their lungs and what their gall bladder is doing to them, and have good information to provide if they would but listen. And no, I don't know what can be done about it except stand up for our rights, demand that we be listened to, and walk out the door if we are not. In other words, KTSWAG..

ravenwoodglass Mentor

The test is very simple for heavens sake! It not like you doctors want her to do eye surgery or something they just want her to put a piece of paper in your eye and see if you are producing tears. If this doctor refuses to do so no matter how long you have been seeing her you need to find another doctor and report her for her negligence. Perhaps if you could drop by one of the doctors offices before the appointment and bring a written request on the doctors letterhead she might comply more readily.

Wolicki Enthusiast

I'm sorry for all of us in having to deal with doctors who do not understand our disease. And rather tahn admit that they dont know, they tell us it's in our head or there's nothing wrong. I really wish the AMA would make medical students read these threads as a part of their training. Grrr

Swimmr Contributor
I think that part of the problem with medical school training is that doctors are not trained to think of their patients as thinking human beings! They are told to "go see the gall bladder in Room 203", or "check the lungs in Room 99" without a thought that there are living, thinking, feeling human beings attached to these organs who have their own take on what is going on with their lungs and what their gall bladder is doing to them, and have good information to provide if they would but listen. And no, I don't know what can be done about it except stand up for our rights, demand that we be listened to, and walk out the door if we are not. In other words, KTSWAG..

There was an episode of Scrubs where one of the topics was to "Get to know the patient by reading the history before walking in and doing whatever needed to be done"

Turk was to operate on a man who's foot was being removed. He jokingly asked why, and an assistant said, "Diabetes." It hit home to Turk because he told his wife he had it so he could snap his fingers and get cookies or a sandwich whenever he wanted because she feared his drop in blood sugar. Therefore turk was able to snack all day every day.

It goes to show that knowing who's body you are working on really helps. Sometimes I wonder why they won't take a look in the mirror and say, "If the shoe was on the other foot..."


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
I really wish the AMA would make medical students read these threads as a part of their training.

I really think it would be an eye-opener for most of them :o

Mysh Rookie

As you can see in my signature - I've had all my teeth crowned due to emanel erosion. It gets very waring doesn't it? all the dental work along with celiac stuff.

I hope you will feel confident enough to insist on the proper tests. Would it help to bring someone with you? I go with my daughter (17) to her doctor and dental appts.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,555
    • Most Online (within 30 mins)
      7,748

    JMF
    Newest Member
    JMF
    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
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.