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

Positive Blood Tests - Why Is My Gp Sending Me To A Rheumatologist First?

Sunflower Girl

By Sunflower Girl
in Doctors

Recommended Posts

Sunflower Girl Newbie
Sunflower Girl
Posted

Has anyone had a similar experience?

After experiencing some symptoms and hearing that there can be a link between Hashimoto's (which I have) and celiac, I asked my PCP to test me for celiac. A few days later, I received a call from his office that my celiac blood tests were positive, and that they are now working on a referral for me to see a rheumatologist. My doctor has left for a vacation, so I can't follow up with him to find out why my next step is not a biopsy? (As I have now read over and over is the norm.)

If you've been through this, would you please share some insight with me? I would really appreciate some info. to calm my nerves a bit!

I noticed others on these boards post their test results and other related information to paint a complete picture, so I will, too.

TEST/// RESULT/// REFERENCE INTERVAL

Deamidated Gliadin Abs, IgA/// 25/// Weak Positive 20 - 30

" IgG/// 30/// Weak Positive 20 - 30

tTG IgA/// 20/// Positive >10

tTg IgG/// 8/// Weak Positive 6 - 9

Endomysial Antibody IgA/// Positive Abnormal/// Negative

Immunoglobulin A, Qn, Serum/// 211/// 70 - 400

My paternal grandmother and my father had hypothyroidism; my sister has both Hashimoto's and celiac, so there are definitely genetic factors at work here. I've had five negative biopsies on nodules in my thyroid.

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

Celiac.com Sponsor (A8-M):


Jenniferxgfx Contributor
Jenniferxgfx
Posted

Ugh. Honestly I think your GP just might not know that a GI is better informed than a rheumatologist when it comes to celiac. (actually I think a car mechanic is better infOrmed about medicine than a rheumatologist, but I'm a bitter angry girl!)

If you only want confIrmation of celiac, you might call back and assert yourself by Insisting on a GI doc. I bet with a history of AI disorders in your family, your GP assumed a rheum would be fine. A GI doc is who'd do a biopsy anyway, so why waste time with a rheum if you don't need to yet?

Good luck.

Skylark Collaborator
Skylark
Posted

I'm guessing your doc is thinking a rheumatologist because they specialize in autoimmunity. You are right that what you need is a GI for a biopsy.

I've read a lot of medical literature, and everything I've read suggests that you're definitely celiac with the positive endomysial antibodies and deamidated gliadin. There are some articles that argue that a biopsy is not even necessary with such clear test results. If you do want the biopsy you need to keep eating gluten to get an accurate test. I think it would also be reasonable to accept a celiac diagnosis, decline a referral, and stop eating gluten based on the blood tests.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

I agree with skylark! While a biopsy/endoscopy isn't the worst test in the world, it's really knd of redundant in this case. Unless you have concerns about diagnosing ulcers or h. pylori.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Oh and I forgot to say mine gave me nightmares even though I was sedated. I wouldn't suggest if if you can avoid it. :/

cassP Contributor
cassP
Posted

ya, i agree... i think the biopsy is pointless. you're positive enough. plus u have Hashimoto's.. u need to avoid gluten anyways. you're totally positive in my opinion. if i were in your shoes, i wouldnt need any more proof.

the big question is why she's sending u to a rheumi?? unless she wants to cover all the basis and test for ALL the AI diseases... but that's not very common in this country for them to be so thorough and on top of things. and all your test results were Celiac tests... i didnt see anything on there that would suggest to look for other diseases. do u have any other weird symptoms & questions that would point to looking at other things???

ya i agree with everyone above- and i would call and ask why she's sending u to a Rheumi... maybe she just had a little brain fog that day :blink:

cahill Collaborator
cahill
Posted

Has anyone had a similar experience?

After experiencing some symptoms and hearing that there can be a link between Hashimoto's (which I have) and celiac, I asked my PCP to test me for celiac. A few days later, I received a call from his office that my celiac blood tests were positive, and that they are now working on a referral for me to see a rheumatologist. My doctor has left for a vacation, so I can't follow up with him to find out why my next step is not a biopsy? (As I have now read over and over is the norm.)

If you've been through this, would you please share some insight with me? I would really appreciate some info. to calm my nerves a bit!

I noticed others on these boards post their test results and other related information to paint a complete picture, so I will, too.

TEST/// RESULT/// REFERENCE INTERVAL

Deamidated Gliadin Abs, IgA/// 25/// Weak Positive 20 - 30

" IgG/// 30/// Weak Positive 20 - 30

tTG IgA/// 20/// Positive >10

tTg IgG/// 8/// Weak Positive 6 - 9

Endomysial Antibody IgA/// Positive Abnormal/// Negative

Immunoglobulin A, Qn, Serum/// 211/// 70 - 400

My paternal grandmother and my father had hypothyroidism; my sister has both Hashimoto's and celiac, so there are definitely genetic factors at work here. I've had five negative biopsies on nodules in my thyroid.

were these the only tests you had done?? did your doc run an ANA also??

If you had a positive ANA that would be a reason for your doc to send you to a rheumatologist.

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

Celiac.com Sponsor (A8-M):


Sunflower Girl Newbie
Sunflower Girl
Posted
  • Author

were these the only tests you had done?? did your doc run an ANA also??

If you had a positive ANA that would be a reason for your doc to send you to a rheumatologist.

Thank you to everyone who responded; I sincerely appreciate it. This is just the information I needed.

As far as I know, I did not have the ANA test (I'll have to google that one to see what that is) as there was no mention of it on the lab results.

luvs2eat Collaborator
luvs2eat
Posted

It was a mildly elevated ANA that sent me to a rheum. several years after my celiac diagnosis. It's a LUPUS marker. I was blood tested every 6 months for almost 2 years and examined by the rheum. doctor. My blood level never changed and I had no symptoms so I didn't need to go any longer.

cassP Contributor
cassP
Posted

It was a mildly elevated ANA that sent me to a rheum. several years after my celiac diagnosis. It's a LUPUS marker. I was blood tested every 6 months for almost 2 years and examined by the rheum. doctor. My blood level never changed and I had no symptoms so I didn't need to go any longer.

i went to a Rheumy for 2 years too- when i was a teenager- for my elevated speckled ANA... just wanted to specify that it's just a marker for Autoimmune Disease.. not specifically Lupus. they thought i had lupus too- cause i had a butterfly rash, and the positive ANA. they also tested me for Sjorgens- i think because the way it looks- if it's speckled or not can point to different AI diseases.

unfortunately- even tho i was NEGATIVE for both- they just decided to leave it an EFFING MYSTERY- when they could have picked up the Hashimoto's i believe. i dont think my Grave's or Celiac abs were up yet... but i really hate our medical system. it's designed to keep us sick and guessing :angry:

if i was born in Italy- they would have told my mom before i left the hospital that i had 2 Dq8s...

im so over it

Skylark Collaborator
Skylark
Posted

Thank you to everyone who responded; I sincerely appreciate it. This is just the information I needed.

As far as I know, I did not have the ANA test (I'll have to google that one to see what that is) as there was no mention of it on the lab results.

There is no reason to do ANA (antinuclear antibodies) with a celiac panel. That one is run if you have symptoms of other autoimmune diseases like lupus, rheumatoid arthritis, or Sjogren's syndrome.

cahill Collaborator
cahill
Posted

There is no reason to do ANA (antinuclear antibodies) with a celiac panel. That one is run if you have symptoms of other autoimmune diseases like lupus, rheumatoid arthritis, or Sjogren's syndrome.

I agree that there is no reason to do an ANA with a celiac panel but with a diagnoses of or symptoms of autoimmune diseases ( such as hashimoto's and celiac's) some doctors will run an ANA as a precaution.

My endocrinologist does an ANA as part of the initial workup on new patients ( along with celiac panal,RA,hashimotos,vitamin D Levels,renal function ect...

Gemini Experienced
Gemini
Posted

i went to a Rheumy for 2 years too- when i was a teenager- for my elevated speckled ANA... just wanted to specify that it's just a marker for Autoimmune Disease.. not specifically Lupus. they thought i had lupus too- cause i had a butterfly rash, and the positive ANA. they also tested me for Sjorgens- i think because the way it looks- if it's speckled or not can point to different AI diseases.

unfortunately- even tho i was NEGATIVE for both- they just decided to leave it an EFFING MYSTERY- when they could have picked up the Hashimoto's i believe. i dont think my Grave's or Celiac abs were up yet... but i really hate our medical system. it's designed to keep us sick and guessing :angry:

if i was born in Italy- they would have told my mom before i left the hospital that i had 2 Dq8s...

im so over it

I don't think they automatically do DNA testing in Italy. I read and heard from Italians that they test kids under the age of 5 IF there is Celiac in the family or they have symptoms. Their medicine is no better than ours. It's also socialized medicine so testing is not done so routinely. I really don't think it matters where you are...doctors only ever look for cancer and if you don't have that, you'll have to figure out your problems on your own because they won't do it for you! Europe may be more savvy regarding Celiac but that doesn't mean the diagnosis rates are much better than in other parts of the world. Plus, there is just too much resistance from people when it comes to changing their diets a bit.

love2travel Mentor
love2travel
Posted

I don't think they automatically do DNA testing in Italy. I read and heard from Italians that they test kids under the age of 5 IF there is Celiac in the family or they have symptoms. Their medicine is no better than ours. It's also socialized medicine so testing is not done so routinely. I really don't think it matters where you are...doctors only ever look for cancer and if you don't have that, you'll have to figure out your problems on your own because they won't do it for you! Europe may be more savvy regarding Celiac but that doesn't mean the diagnosis rates are much better than in other parts of the world. Plus, there is just too much resistance from people when it comes to changing their diets a bit.

When we were recently in Italy we were told by a medical professional that it is mandatory for everyone to be tested for celiac disease by the age of 5.

cassP Contributor
cassP
Posted

I don't think they automatically do DNA testing in Italy. I read and heard from Italians that they test kids under the age of 5 IF there is Celiac in the family or they have symptoms. Their medicine is no better than ours. It's also socialized medicine so testing is not done so routinely. I really don't think it matters where you are...doctors only ever look for cancer and if you don't have that, you'll have to figure out your problems on your own because they won't do it for you! Europe may be more savvy regarding Celiac but that doesn't mean the diagnosis rates are much better than in other parts of the world. Plus, there is just too much resistance from people when it comes to changing their diets a bit.

i believe it's Finland where the diagnosis rate for Celiac is around 70%. that's certainly better than our 2 or 3 %. it's all about money really- and Big Pharma doesnt make money off us- that's why it's not a priority here. there's pros and cons to all the different "1st world" countries no doubt. and while im very proud of how America makes it possible for us to be cutting edge sometimes... our health care system is really designed to keep us sick.

  • 3 weeks later...
Krystalcatt Newbie
Krystalcatt
Posted

Hi;

About the rheumatologist - for me she's a blessing. I go to a naturopath who ran a urine test and that came back suggesting celiac. Last year's food allergy test came back avoid grains etc. So I went to my MD. He's good too, but busy. Was willing to run a celiac test, but only ran (I believe it's called) EMA which he called me and said it's negative. End of story - with him.

Luckly I had a coming appoint with my Rheum. and I asked her to run a celiac panel and a few more that I found mentioned here (thank you) Not only did she run H pylori, vit d, cal, mag, etc.... she ran a host of others I didn't come up with.

I went back to my naturopath and asked her to run a pancrea test and CA marker. (I think if I would have asked my Rheum she might of run these also)

I am thankful my Rheum is/was so willing to run the blood work. I have started no gluten/dairy/eggs/grains (started again - showed on the original year ago allergy test) as I did feel better when I was on it. No matter what the rest of the blood work comes back, I know I'm better off without it. And considering I am sero-negative RA, I could possibly be sero-negative celiac.

Glad to have found this site - thank you for all your help!

Krystalcatt

Archived

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

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


  • Member Statistics

    • Total Members
      132,563
    • Most Online (within 30 mins)
      7,748
    Bob Madden
    Newest Member
    Bob Madden
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.