Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Went To Internist (rude/skeptical) For Testing

averyannsmom

Recommended Posts

averyannsmom Rookie
averyannsmom
Posted

Hi All,

Sorry if something similar has been posted 1000 times before. Brief History: Had fibromylagia pains since 4, diagnosed at 21, IBS mostof life, weight gain that I can't seem to shed, sleeping difficulties. Had severe preeclampsia with birth of DD and delivered her 9 weeks early at 2.5 lbs. She has had reflux, and chronic diarrhea finally diagnosed as dairy protein/soy protein intolerant and put on elecare which is helping. The D started with her after feeding her oatmeal one day. DUring pregnancy midwife suggested eliminating wheat. DD, who is only 9 months old was tested for celiac and wheat, rice, soy, egg, dairy allergy. All came back fine....but she hasn't been exposed to any of those things but rice and the oats.

So, with my history, decide to get tested. I made an appointment with an internist (newly relocated and had to find new dr). Her medical student was great and made a statement that testing is pretty good and that Celiac is not as rare as once thought and they find people with it all the time now.

Doctor made some statements prior to handing me the lab request sheet that my symptoms aren't necessarily from celiac or wheat. She also questioned the authenticity of my fibromyalgia diagnosis. I guess once I gave her the name of my rheumatologist and the major hospital her works thru she believed me.

So I questioned which tests she was having the lab run. It's the IgA for Celiac. She said any other testing (such as for Wheat intolerance) would just be experimenting and that they aren't reliable. I don't really know what to think. On the lab form she DID NOT fill in the dot that indicates (IgG, IgA, IgM), rather she hand wrote: IgA tissue transglutaminase Ab (screen celiac tiissue).

Is this correct? Are there any other test they should run, or am I getting the right tests?

Thanks for your opinions!

Kara

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

That's all they ran on me, but it's not right. There should be five tests run, but I don't know the names of them. Maybe someone else can post them. I know that IgG and TtG are two of the ones that are important.

Are you currently gluten-free? If so, the tests won't be accurate.

averyannsmom Rookie
averyannsmom
Posted
  • Author

No, I am not gluten-free. I've actually been eating more wheat/gluten than normal for the sake of getting a proper diagnosis. I wonder if it's illegal to add stuff to the lab form :-) I haven't taken it in for the test yet. :-) I know some of the books I've been reading suggest several tests, but I didn't know if that was included in the "screen celiac disease"

That's all they ran on me, but it's not right. There should be five tests run, but I don't know the names of them. Maybe someone else can post them. I know that IgG and TtG are two of the ones that are important.

Are you currently gluten-free? If so, the tests won't be accurate.

CarlaB Enthusiast
CarlaB
Posted

If I were having the blood taken, I would request the proper tests, but the doc needs to do that. The IgA just doesn't give you enough info. I don't know if there's any way you can ask for more tests with your doc. I asked my ob/gyn to run some blood work on me recently and told him I just wanted to be sure everything was getting better. He was happy to do it, but I have a rapport with him as he's delivered several of my children and I've been seeing him for 15 years. In fact, we moved and I still go to Indianapolis to see him yearly. It's worth it for the rapport.

averyannsmom Rookie
averyannsmom
Posted
  • Author

I guess I'll take the list of tests, if someone tells me what they are (or I find them on the forum), and ask the lab tech if they are testing for all of them. If he/she doesn't know or says no, I'll ask them to call the doctor up and verify. I've had enough dealings with the medical community to get around. The best thing is to say "I'm requesting these tests. Are you refusing?" If they refuse you ask them to write in your chart that you specifically asked for A B & C, and that they are refusing....and then make sure you watch them write it in your chart. The big red lawsuit flag goes up when you do this and they generally will agree to the tests. It doesn't cost them anything so why should they care!

Thanks for your help!

If I were having the blood taken, I would request the proper tests, but the doc needs to do that. The IgA just doesn't give you enough info. I don't know if there's any way you can ask for more tests with your doc. I asked my ob/gyn to run some blood work on me recently and told him I just wanted to be sure everything was getting better. He was happy to do it, but I have a rapport with him as he's delivered several of my children and I've been seeing him for 15 years. In fact, we moved and I still go to Indianapolis to see him yearly. It's worth it for the rapport.
mle-ii Explorer
mle-ii
Posted
The IgA just doesn't give you enough info.

Right, lets say the person in question is IgA difficient.

jayhawkmom Enthusiast
jayhawkmom
Posted

I have my first set of test results in my hand. I had a "Celiac Panel" done.

That included:

Total IgA

tTg IgA

Gliadin AB IgG

Gliadin AB IgA

tTg IgG

EMA

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

Celiac.com Sponsor (A8-M):


averyannsmom Rookie
averyannsmom
Posted
  • Author

Thank you! Thank you! Thank you!! I will take that list with me and make sure they run all of those tests!

Kara

I have my first set of test results in my hand. I had a "Celiac Panel" done.

That included:

Total IgA

tTg IgA

Gliadin AB IgG

Gliadin AB IgA

tTg IgG

EMA

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you! Thank you! Thank you!! I will take that list with me and make sure they run all of those tests!

Kara

Also make sure they run a B12 and ferritin and folate levels.

averyannsmom Rookie
averyannsmom
Posted
  • Author

ok. Do those(b12, folate & ferritin) tell you if you are absorbing vitamins properly?? Or something else? I take a huge amount of B complex vitamin by order of my midwife (and I still take it for energy). Will that throw those off? If I stop taking it for a few days before the blood draw will it help the outcome of the test?

Thanks,

Kara

Also make sure they run a B12 and ferritin and folate levels.

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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,363
    • Most Online (within 30 mins)
      7,748
    NAC
    Newest Member
    NAC
    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
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...