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
      132,921
    • Most Online (within 30 mins)
      7,748
    Rusty49
    Newest Member
    Rusty49
    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

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.