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

Whats The Deal With Drs?


crimsontopper

Recommended Posts

crimsontopper Rookie

i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

You were one of the lucky ones, first of all to know about celiac, and secondly to have a doctor willingly test you for it. Count yourself as fortunate :) .

OptimisticMom42 Apprentice

It was easy for us also. There are three of us in our house and we didn't have and problem getting the dr's to dx us.

Jestgar Rising Star

I had no problem getting tested, and even though it was neg (anti gliadin only was run) my doc feels that the improvement in my health is proof enough.

ENF Enthusiast

It seems that various states have different rules for allowing insurance companies to deny coverage for testing and other procedures. My state is pretty good in this regard, and I can usaually get whatever tests I want.

G-freegal12 Contributor

They are all so under educated it's crazy. :angry: I am gonna be a doctor so I can be educated and fix people :D ....why did everyone start screaming and running away when I said I wanted to be a doctor...? :P

GarBear Newbie
i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

Ugh! i went to my (mediocre) doctor yesterday to ask him for the lab slip to get tested for celiac (I've been gluten-free for three months now), and anyway... he was SO RUDE about it! I was really upset! He had originally told me that i had irritable bowel (which in my opinion is a total cop-out diagnosis and it just means that they have no idea what's wrong with you). It seemed like he was offended that i didn't agree at all with his original diagnosis.

Anyway... i've been rambling.. Took my blood tests this morning (anxiously waiting for the results! haha)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Ugh! i went to my (mediocre) doctor yesterday to ask him for the lab slip to get tested for celiac (I've been gluten-free for three months now), and anyway... he was SO RUDE about it! I was really upset! He had originally told me that i had irritable bowel (which in my opinion is a total cop-out diagnosis and it just means that they have no idea what's wrong with you). It seemed like he was offended that i didn't agree at all with his original diagnosis.

Anyway... i've been rambling.. Took my blood tests this morning (anxiously waiting for the results! haha)

IF you have been gluten-free for 3 months chances are the test will be negative. You need to be consuming gluten for the tests to be positive. If you need a doctors diagnosis you need to go back on gluten. If the challenge makes you very ill IMHO you have your answer no matter what the test results.

jkr Apprentice
i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

Yes, I had to have two endoscopies to prove it to the GI. When I first told him last year I thought I had celiac, he said to me "but you don't diarrhea." After the first endoscopy I told him I wanted the blood tests, then he took me seriouisly when they were very abnormal. Then he took the biopies for the second one. I know a lot of people would have switched doctors but I didn't want to go to another doctor and start over.

Good luck.

ang1e0251 Contributor

You're lucky because you had a clue to your illness. Those of us that are clueless go to our dr's with these seemingly random symptoms expecting our dr to put it all together. Many dr's are just undereducated about celiac disease and don't see the pattern. So we are stuck spinning our wheels while test after test is run with no results. Oh if I only could have had the knowledge to ask for a celiac panel....

GarBear Newbie
IF you have been gluten-free for 3 months chances are the test will be negative. You need to be consuming gluten for the tests to be positive. If you need a doctors diagnosis you need to go back on gluten. If the challenge makes you very ill IMHO you have your answer no matter what the test results.

Interesting.. Well thanks for the info =)

ann72601 Apprentice
i am new to the forum. i am currently exhibiting many of the symptoms most posters talk about. during my reading i have come across one thing that seems to be consistant throughout diagnosis and that is that drs easily dismiss celiac. why is this? i asked my dr to prefrom the test and after asking why they agreed easily.

It seems that if you are a woman, it's harder to be heard. If you're an uninsured woman, it's even harder. If you are alone........bring someone with you :lol:

Li'l Buck Newbie

At 40, my lifetime GP retired. My new doctor checked my history and had me tested almost immediately. I think he has celiac disease and so has a vested interest in learning about the disease. What kills me are the Drs in emergency (presumably they are supposed to have the most current medical info?) and paramedics who know nothing about it.

I think that most Doctors get their information (post medical school and perhaps even during) from the drug companies and since they don't have a drug to patent to cure us; they prefer to focus on the drugs to treat our symptoms... far more profitable for the drug companies.

ann72601 Apprentice
At 40, my lifetime GP retired. My new doctor checked my history and had me tested almost immediately. I think he has celiac disease and so has a vested interest in learning about the disease. What kills me are the Drs in emergency (presumably they are supposed to have the most current medical info?) and paramedics who know nothing about it.

I think that most Doctors get their information (post medical school and perhaps even during) from the drug companies and since they don't have a drug to patent to cure us; they prefer to focus on the drugs to treat our symptoms... far more profitable for the drug companies.

In my case, I had to kiss a lot of frogs before I found the prince. I use an MD and ND, both are older and wiser having experienced more than med school. It doesn't matter what there is in life to learn; there is nothing like experiencing it and this means doctors too. My thanks actually goes to the people here who have been there and done that. They've helped me know how to deal with docs and all the daily challenges that come with celiac. I love them!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.