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

Not Sure If My Symptoms Are Celiac Or Gluten Intolerance

lovechild

Recommended Posts

lovechild Rookie
lovechild
Posted

Hi there,

 

I am new to this forum. I been having issues with my health for the past few years and my doctor has done almost every test under the sun. The past couple of months I finally got fed up with how crappy I felt and went to my doctor asking him if I could have a test for celiac disease again. He told me that since I had a test two years prior that he didn't want to do another one because that test came back negative. He told me that if I wished I could eat a gluten free diet if I thought it would make me feel better! Nice! 

 

Since I feel like I won't be getting anywhere with this doctor I decided to go strictly gluten free for a few months to see how I feel. I mentioned to my doctor again that I am trying the gluten free diet and he said that likely I am not celiac because my recent blood work all came back normal. My iron is up as well as my vitamin B12. Can you still have celiac or gluten intolerance and have normal bloodwork?

 

Here are the symptoms that I have been having which sounds a lot like gluten intolerance to me (or possibly celiac??). I know that if I eat something with gluten in it I don't feel well shortly after eating it so there must be something going on there.

 

-extreme fatigue (most weekends spent sleeping during the day)

-waking up feeling exhausted after sleep 8 hours a night

-weight gain (can't lose weight in stomach and legs despite trying)

-a lot of water retention/bloating in stomach

-headaches, diarrhea or sometimes constipation, upset stomach shortly after eating anything with gluten)

-tingling and pins and needles from my mid-face to my toes on both sides (tests done to rule out other causes)

-brain fog

-my entire body hurts (joint and muscle pain)

-lower back pain

-panic attacks and anxiety at bedtime

-stuffed sinuses

 

For the past week I have been strictly gluten free and I am starting to feel better already. I have lost 3.5 pounds and my energy and brain fog has already improved. I am still having body pain, back aches and tingling. 

 

Should I maybe go to another doctor for a second opinion which of course would mean I would have to go back to eating gluten again? 

 

Thanks for your help.

Carrie

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

Celiac.com Sponsor (A8-M):


Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Hi lovechild, welcome to the forum

That is a very familiar looking list of symptoms.

If you do want to change Dr, if you tested very quickly you could try and minimize how long you need to eat gluten for a blood test. It might take longer to get a biopsy done.

Do you have a list of the tests you had done? You will find the recommended panel on the board, or someone will pop by with it soon.

Sounds like you have taken the first steps to finding out if gluten is your problem. You are in good company, ask lots of questions

Kaukaukka Newbie
Kaukaukka
Posted

Hi Lovechild-

Doctors dont take it as seriously as they should. My Dr. at the time said you most likely didnt have it. I asked for the test when my aunt came to me as said 4 aunts have it, an several cousins. Turned out, I did.  I recommend being persistant its your heath. In the mean time go gluten free, it wont hurt you.  Do it long enough....may take some time to see a real difference. I am not to sure about some of the symptoms, like high iron, usally its lower with Celiac (anemia and all) and lhigh b12...your are vitamin deficient with Celiac.  it can be super frusterating when your not well and you cannot understand why. I felt the same.  I cam here all those years back and it helped me so much.  GOOD LUCK!

 

Rebecca

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

The stuffed sinuses sounds like dairy but the rest could be gluten.

 

You should ask the doctor for a copy of your past Celiac test.

If it was just a tTG test it's not enough.

A panel covers more bases.

 

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG

 

But you have to be eating gluten to do the test.

lovechild Rookie
lovechild
Posted
  • Author

Hi lovechild, welcome to the forum

That is a very familiar looking list of symptoms.

If you do want to change Dr, if you tested very quickly you could try and minimize how long you need to eat gluten for a blood test. It might take longer to get a biopsy done.

Do you have a list of the tests you had done? You will find the recommended panel on the board, or someone will pop by with it soon.

Sounds like you have taken the first steps to finding out if gluten is your problem. You are in good company, ask lots of questions

 

Thanks for your message. I unfortunately don't have a list of tests that I have done to detect celiac disease. I believe my doctor only tested for one antibody and that came back negative. I can't really remember if I was eating much wheat back then anyway as I usually don't eat a lot of wheat anyway. I am hoping after I have been off the gluten for a while and I start to notice big differences in my symptoms only to go back on gluten and have all mty symptoms return that my doctor will take me seriously. Either that or I will have to find another doctor.

lovechild Rookie
lovechild
Posted
  • Author

Hi Lovechild-

Doctors dont take it as seriously as they should. My Dr. at the time said you most likely didnt have it. I asked for the test when my aunt came to me as said 4 aunts have it, an several cousins. Turned out, I did.  I recommend being persistant its your heath. In the mean time go gluten free, it wont hurt you.  Do it long enough....may take some time to see a real difference. I am not to sure about some of the symptoms, like high iron, usally its lower with Celiac (anemia and all) and lhigh b12...your are vitamin deficient with Celiac.  it can be super frusterating when your not well and you cannot understand why. I felt the same.  I cam here all those years back and it helped me so much.  GOOD LUCK!

 

Rebecca

Thank you very much Rebecca. How long before you started to notice your symptoms diminishing once going gluten free?

lovechild Rookie
lovechild
Posted
  • Author

The stuffed sinuses sounds like dairy but the rest could be gluten.

 

You should ask the doctor for a copy of your past Celiac test.

If it was just a tTG test it's not enough.

A panel covers more bases.

 

Total IgA

Transglutaminase IgA tTG-IgA

Deaminated Gliadin IgA DGP-IgA

Deaminated Gliadin IgG DGP-IgG

 

But you have to be eating gluten to do the test.

I actually don't eat a lot of dairy for that exact reason (like 2-3 times a week max and no milk) and I still am stuffed up. Thanks for your message. I will see if my doctor will give me my test results as I think he only did one test and not the panel.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,610
    • Most Online (within 30 mins)
      7,748
    Dayna cerminata
    Newest Member
    Dayna cerminata
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Alibu
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Alibu · Posted

      I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive.  I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms. Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either. I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac? I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.
    • trents
      Found coffee or coffee pods that contain gluten

      By trents · Posted

      Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing?
    • linnylou73
      Found coffee or coffee pods that contain gluten

      By linnylou73 · Posted

      Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten
    • KimMS
      Helping child go strict gluten-free and concerns about growth/height

      By KimMS · Posted

      Thank you! Very helpful.
    • Scott Adams
      Helping child go strict gluten-free and concerns about growth/height

      By Scott Adams · Posted

      This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
×
×
  • Create New...