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

Sort Of Diagnosed?


maggiesimpson

Recommended Posts

maggiesimpson Apprentice

Hi everyone, I'm new here and was hoping to get a little input on my test results and diagnosis.

After going to a holistic nutritionist to improve my overall health, we discovered that I am gluten intolerant. I went to my doctor to get tested for celiac disease. I know I am at an increased risk due to already having hashimoto's disease. I have a list of symptoms, most noteably excessive bloating and gas, floating smelling discolored stools that I can sometimes see my food in, not sleeping well, feeling hungry even after eating a meal, tired, achey, and fatigued muscles. I did the self-test for gluten intolerance and definitely reacted. I then had to load up on gluten for a few weeks before I could get my blood drawn for the medical tests.

My doctor ran the following:

Metabolic panel

sodium 139 range 135-145

potassium 4.0 range 3.5-5.0

chloride 105 range 98-107

co2, total 25 range 23-31

anion gap 9 range 5-18

glucose 83 range 65-100

clacium 9.3 range 8.5-10.5

bun 9 range 8-25

cratinine 0.78 range 0.57-1.11

bun/creat ratio 12 range 10-20

GFR >60 range >60

IGA tissue transglutaminase AB

<1.2 range <4.0

I know now that she should have run more tests instead of just this one. Anyway, when I got the results my gut feeling told me there was something more. I at least wanted to get checked for a wheat allergy or get a referal to a gastroenterologist after this. I told my doctor this and told her the reason was because I was feeling so crappy while eating all this gluten. All my symptoms came back. Plus, my stool became an obvious green color. It was slowly transitioning to a grayish greenish color already, but now it is bile green.

Anyway, my doctor's assistant got back to me today. I was going to just summarize what she said, but I decided I'll paste it here so you can see her actual words for yourself.

" I talked to Dr. xxx this morning and she said the test she ordered for celiac disease is about 80% accurate. She said the gold standard would be a tissue biopsy which she feels is not needed at this time. Considering your symptoms its pretty clear you do have celiac disease, which is the same as gluten intolerance. She recommends you cut out gluten products and you should start to feel a lot better."

I can't help but feel like I've been left hanging. I would feel better getting a definite yes/no answer about having celiac. For my family health history, and to know to what extent I need to avoid gluten. If I just have an intolerance I just won't eat it. But, if I have celiac I would be sure to avoid cross-contamination due to the possibility of getting damage done to my digestive system without any symptoms to make me aware. She won't order more tests. I just feel a little frustrated and am not sure I should even say I have celiac disease.

Could I get some input? Thoughts? Should I seek out further testing? What should I call myself- celiac or gluten intolerant?

Thanks.


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Celiac disease and gluten intolerance are NOT the same. Celiac is an autoimmune disease and puts you at risk for more autoimmunity and some cancers. You are absolutely right that the consequences for eating gluten are higher if you're celiac.

Your doctor is unusual in realizing that the TTG test only catches celiac 80% of the time. Many doctors don't know that. It means there is still a 20% chance you're celiac and the test simply missed it. You need more blood testing at a bare minimum because sometimes people will be positive on different tests in the celiac panel.

You need to ask for:

-Total IgA. None of the IgA tests are valid if you don't make normal amounts of IgA and low IgA is a risk factor for celiac.

-It would be good if your Dr. can get the lab to do TTG IgG if your IgA is low. This is called "reflex" testing and many labs will take reflex orders.

-Deamidated gliadin IgA and IgG. This is a newer test that is somewhat more sensitive than TTG.

-Possibly anti-endomysial IgA, which is another autoimmune test for celiac. Not all labs run it any more because it's an older test that is done by hand.

Some people have all negative blood tests and are still found to have celiac on biopsy. It's hard to get your Dr. to justify a biopsy without any positive bloodwork though.

Mnicole1981 Enthusiast

My creatinine and anion gap were a little high. Is that odd with celiac disease?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Oh my goodness medication causing pain !!!!

    2. - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    3. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    4. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,845
    • Most Online (within 30 mins)
      7,748

    Mack22343
    Newest Member
    Mack22343
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      I think I found a huge culprit for severe reactions to create worsening of my c symptoms. Do people with celiac have sensitivity and /or have opposite reaction to certain medications Where can I find a list ?  I'm new here I'm.wondering why I am getting worse when I take certain medicine...the burning feet.  Rebound muscle pain so intense  How many people get opposite effects or have a horrible attack after these meds
    • Colleen H
      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
×
×
  • 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.