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

Is My Doctor Clueless (new To The Forum)

DelphicDragon

Recommended Posts

DelphicDragon Newbie
DelphicDragon
Posted

Hi all-

I've been having a lot of the problems described here (fatigue, foggy mood, digestive issues, sensitive stomach, etc). I've been pretty much having constant stomach pain since I was 8 (22 now) and after switching from a pediatrician to a General Practioner, I was told that I needed to have the stomach pain checked out. I went to a GI who did a celiac panel and one of the tests came back positive (she won't tell me which one). I thought, from researching celiac, that if one test was positive, I had the disease, but my GI says not to worry and to continue to eat gluten and take a digestive enzyme as my problem is lactose intolerance. (I did test borderline at age 8)

I don't really know where to turn and am getting nowhere with the doctor as I keep calling and getting the runaround because no one wants to tell me which test is positive because I'm "not qualified" (I'm a biochemist, so I think I'm inherrantly qualified, but that's beside the point.)

Any thoughts? Anyone here have a single positive test?

I'll post more when I know more. Thanks for the support.

Sara

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

Celiac.com Sponsor (A8-M):


hannahsue01 Enthusiast
hannahsue01
Posted

It's the law.....they HAVE to give YOU the test results!!!!!! Well in the US anyways!

chrissy Collaborator
chrissy
Posted

tell them you want a copy of your medical test. if it is the anti-gliadin that is positive, it can be caused by other things than celiac-----but i can't imagine what that would have to do with lactose.

did you test borderline lactose intolerance or borderline celiac when you were 8?

LKelly8 Rookie
LKelly8
Posted
I went to a GI who did a celiac panel and one of the tests came back positive (she won't tell me which one).

Any thoughts? Anyone here have a single positive test?

Hi, DelphicDragon. :) I had my blood panels (done years apart) twice and both came back negative. I was positive on biopsy only.

As far as your test results (I don't know what the laws are outside the US) those tests are YOUR property, they must comply and give you copies. I don't think I'd feel comfortable going to a doctor who "wouldn't tell me", yikes! :o

Just FYI - They can charge for copies of x-rays, mine cost 12$ a "negative".

CarlaB Enthusiast
CarlaB
Posted

Sara, I would insist on getting the test results ... all of them, not just the one. It's your right!! I also would suggest finding a new doctor.

Yenni Enthusiast
Yenni
Posted

Sounds like your doctor is like the ones I have met. After spending some time reading about gluten intolerance I felt I knew more than they did. Some of them told me the weirdest things.

My blood test came out negative twice (10 years apart). Now I got positive on Milk and gluten from EnteroLab.

In Sweden (where I am from) it is illigal to keep the test results from the patients, like in the US.

To tell you the truth my doctor do not want to give me my latest test results either. I was curious what they were (even if they were negative- I had also been gluten free for 3 weeks when they were taken and the doctor told me it didn't matter) but they were not given to me. I got this very vague "they were negative anyways.." kinda mumble. They also didn't want to have anything to do with EnteroLab. And even if I felt better after stopping with gluten I was still told it couldn't be.

I am not fond of doctors after many years of this stuff... :P

GFBetsy Rookie
GFBetsy
Posted
Hi all-

I've been having a lot of the problems described here (fatigue, foggy mood, digestive issues, sensitive stomach, etc). I've been pretty much having constant stomach pain since I was 8 (22 now) and after switching from a pediatrician to a General Practioner, I was told that I needed to have the stomach pain checked out. I went to a GI who did a celiac panel and one of the tests came back positive (she won't tell me which one). I thought, from researching celiac, that if one test was positive, I had the disease, but my GI says not to worry and to continue to eat gluten and take a digestive enzyme as my problem is lactose intolerance. (I did test borderline at age 8)

I don't really know where to turn and am getting nowhere with the doctor as I keep calling and getting the runaround because no one wants to tell me which test is positive because I'm "not qualified" (I'm a biochemist, so I think I'm inherrantly qualified, but that's beside the point.)

Any thoughts? Anyone here have a single positive test?

I'll post more when I know more. Thanks for the support.

Sara

If I were you, I'd tell the doctors office that, if they are unwilling to accede to your request, you will be putting them in contact with your lawyer. I'm not a real fan of lawsuits, but this office needs to know that they are putting themselves in danger of legal action. Besides, I wouldn't be surprised if the threat is enough to make them reconsider their position.

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

Celiac.com Sponsor (A8-M):


DelphicDragon Newbie
DelphicDragon
Posted
  • Author

Thanks for your support. In response to the questions- I tested positive for lactose intolerance when I was 8, no other testing was done then.

I am in the US and I know that they have to give me results and/or copies of my blood work, but getting that is like pulling teeth. Apparently, because there was a positive result only the doctor can talk to me about the results... (I don't know why but that was the response I got when I called back)

Thanks again- wish me luck tomorrow.

Sara

lawstudent Rookie
lawstudent
Posted

The posters above are correct; you do have a right to a copy of all of your test results, though they may have the right to charge you a nominal fee, depending on your state.

When my blood test results were in, the assistant/secretary at the GI's office told me by phone that the results were negative, but when I asked for the exact numbers, she said one test was "borderline", but she had a tough time reading me the numbers. I went to their office two days later after not hearing from the doctor to explain the results (as was promised) and told the front desk I wanted a copy my results now. I was asked why, because they had called and told me that they were all negative results. I told them that was untrue, there was a borderline. After some hem-hawing about how my file could be 3 floors down, they finally decided they had it but told me in a "threatening" tone..."you'll have to sign a release to get it", as if that would deter me. I told them to hand the release over, finished it in two seconds, and got my copy of the test results!

When I got the copy, I saw that there were 3 negatives and 1 POSITIVE (flagged as HH from the lab). Granted the amount was the lowest positive possible, but it was still positive and that is not what I was told.

At least you can talk to your doctor...I got only the secretary who couldn't pronounce the name of the tests and gave me inaccurate numbers over the phone This same secretary called an entire week later and said that the doctor decided I did have celiac and wants to schedule an endoscopy. I have an appointment tomorrow to see my GP and discuss my results with him and decide how to proceed, but it will not be with that GI!

I would advise you to find a new doctor as well. You are the only one looking out for you!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. RMJ
      - RMJ replied to Xravith's topic in Introduce Yourself / Share Stuff
      1

      Do Gluten Enzymes actually work?

      If you successfully digest gluten with enzyme supplements so it won’t give you side effects, your challenge won’t be worthwhile because the digested fragments of gluten also won’t stimulate antibody production or cause intestinal damage.
    2. FannyRD
      - FannyRD replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      Thanks for the resource! I will check it out!
    3. Scott Adams
      - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      You can search this site for 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"...
    4. Scott Adams
      - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten ...
    5. trents
      - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748
    Eldret419
    Newest Member
    Eldret419
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • RMJ
      Do Gluten Enzymes actually work?

      By RMJ · Posted

      If you successfully digest gluten with enzyme supplements so it won’t give you side effects, your challenge won’t be worthwhile because the digested fragments of gluten also won’t stimulate antibody production or cause intestinal damage.  
    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      Thanks for the resource! I will check it out!
    • Scott Adams
      Gluten free phosphate binders for dialysis patients

      By Scott Adams · Posted

      You can search this site for 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
      Symptoms

      By Scott Adams · Posted

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Symptoms

      By trents · Posted

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
×
×
  • 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.