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

I Need Verification If Correctly Tested For celiac disease

nb-canada

Recommended Posts

nb-canada Apprentice
nb-canada
Posted

It has been a year since my 35 year old son was positively diagnosed with celiac disease - blood test, biopsy & DH was positive. I unfortunately had negative tests. I have been gluten-free for 7 months & feel great except for fatique & the occassional episode of accidental glutening. In my opinion, I have had celiac disease most of my life.

My question - did I get the proper blood testing? My family doctor says it was the best test and that it was sent to a lab in Toronto. I have a copy of the results and they were from another hospital in my province - therefore I don't have much faith in the results. :(

The test results are -

- Immunoglobulin IgG 6.84 (4.54 - 14.99 g/L)

- Immunoglobulin IgA 1.23 (0.32 - 3.40 g/L)

- Immunoglobulin IgM 3.83 (0.15 - 2.27 g/L)

As you can see the only test not normal is the IgM. But as far as I am concerned these tests are not the best tests for celiac disease. What do you think?

Also ony 3 samples from my endoscopy were biopsied. Results - small intestinal mucosa with mild lymphocytic infiltration; no pathological changes of celiac disease is identified.

I don't have a lot of faith in the GI either because his first comments to me were - "you are too fat to have celiac disease" and "you are too old". I should have walked out then because I think the whole thing was a waste of time. We have to educate these doctors!

Thanks in advance for your opinions! :D

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

Celiac.com Sponsor (A8-M):


Gerri Explorer
Gerri
Posted
It has been a year since my 35 year old son was positively diagnosed with celiac disease - blood test, biopsy & DH was positive. I unfortunately had negative tests. I have been gluten-free for 7 months & feel great except for fatique & the occassional episode of accidental glutening. In my opinion, I have had celiac disease most of my life.

My question - did I get the proper blood testing? My family doctor says it was the best test and that it was sent to a lab in Toronto. I have a copy of the results and they were from another hospital in my province - therefore I don't have much faith in the results. :(

The test results are -

- Immunoglobulin IgG 6.84 (4.54 - 14.99 g/L)

- Immunoglobulin IgA 1.23 (0.32 - 3.40 g/L)

- Immunoglobulin IgM 3.83 (0.15 - 2.27 g/L)

As you can see the only test not normal is the IgM. But as far as I am concerned these tests are not the best tests for celiac disease. What do you think?

Also ony 3 samples from my endoscopy were biopsied. Results - small intestinal mucosa with mild lymphocytic infiltration; no pathological changes of celiac disease is identified.

I don't have a lot of faith in the GI either because his first comments to me were - "you are too fat to have celiac disease" and "you are too old". I should have walked out then because I think the whole thing was a waste of time. We have to educate these doctors!

Thanks in advance for your opinions! :D

I didn't get to see my results. I was told to go on a gluten free diet indefinitely. Three weeks later and after some blood was done, I seen my GASTRO, she said that there was possible chance I was Celiac, as my blood work showed a great improvement. After having an endoscopy (no results yet). Gastro said I might only be gluten intolerant and what I have read that many gluten intolerant change to celiac. Blood test and endoscopy don't always confirm celiac.

I already had a doctor tell me that he would have diagnosed me with Celiac, without the endoscopy. As he was at Urgent care clinic and not family doctor, I don't know if that counts. Celiac you can gain weight, be constipated all the time. It is also know fact that biopies only taken from very small section on small intestine, and very frequently not taken from the damage area. Corn, gluten cause celiac problems different parts of the small intestine. I have major problems with corn, and products made with corn, as well.

If you feel better following a gluten free diet, you have your answer. I could not handle one more day of eating gluten, corn, and have really restricted my diet from these things, and feel much better. I believe I have been Celiac, and had signs since I was a toddler, and now 54. No one can pay me to go back on gluten or corn, no way no how.

I see you live in Canada (NB), I am in ON.

Hugs

Gerri

cat3883 Explorer
cat3883
Posted

It looks like you werent tested for TTG whatever that is. The other bloodwork that you you had came back normal for me. The TTG for me was at 59 with the normal range of 0-19. Anything over 30 shows strong positive. My GI then did the genetic test and I came back positive for both genes. My biopsy is this Wednesday. I cannot go gluten free until then and I cant wait. The doc knows I have celiac even before the biopsy. He is doing it just to see where I am at before I begin my new lifestyle. I am so fortunate to have the right Doc. Good luck to you.

Nancym Enthusiast
Nancym
Posted

Blood tests are negative sometimes when there isn't total villious atrophy. Also, blood tests don't tell you anything about gluten sensitivity without villious atrophy. For that, you'd need a test like Enterolab.com does.

nora-n Rookie
nora-n
Posted

Those are not celiac tests.

But, when testing for celiac, (ttg IgA ans antigliadin IgA and endomysium abs), they also run the total IgA just to check if the tests I listed are valid. In case of selesctive IgA deficiency (about 10% of the population have that) they ahve to run the IgG versions of those tests.

Again, they did not run any celaic tests on you. Shame on them. go back and inform them they did not run any celiac tests on you, just the rutine IgA test to see if the celiac tests that were not done, are valid.....I hope they do not do this stupid testing on all patients they think they are testing for celiac.

About the lymphocytic infiltration:

Some places will diagnose you with celiac with increased intraepitelial lymphocytes together with symptoms etc. Go find Dr. Lewey's website, there he explains how many of them are normal per villi tip and how many are abnormal. I have read in Don Wiss's postings on some other forums that some places will diagnose you toghether with some other info that points to celiac if you ask for a second opinion on the slide. I think it was the U of Maryland. Dr. Lewey is at www.thefooddoc.com

nora

  • 4 months later...
nb-canada Apprentice
nb-canada
Posted
  • Author
About the lymphocytic infiltration:

Some places will diagnose you with celiac with increased intraepitelial lymphocytes together with symptoms etc. Go find Dr. Lewey's website, there he explains how many of them are normal per villi tip and how many are abnormal. I have read in Don Wiss's postings on some other forums that some places will diagnose you toghether with some other info that points to celiac if you ask for a second opinion on the slide. I think it was the U of Maryland. Dr. Lewey is at www.thefooddoc.com

nora

Thanks Nora. I just seen your post today and I really appreciate your response. I checked out Dr. Lewey's site. Very interesting. I think I may print out the info and show it to my doctor. It does seem that my biopsy results could mean celiac especially with the results of a gluten free diet and my son's definite diagnosis. My family doctor has given me a diagnosis of Gluten Intolerant but it would be nice to have the Celiac diagnosis so I could claim the expenses on my Income Tax. Do you know how long a slide is kept in the lab? It would be nice to get a second opinion.

I have been diagnosed with Hypo Thyroid and had Shinges (for 5th time) since this post. Besides that I am feeling great....still gluten free :).

tarnalberry Community Regular
tarnalberry
Posted

(EDIT: doesn't apply to this thread, as the below is US, not Canadian, and I was a US-centric dork for not paying more attention earlier (which you'd think I wouldn't be, living all of three hours from Canada, but no... /facepalm :)). but I'll leave here for other reference use.)

you can only deduct the extra expenses of the cost of gluten free foods (like, how much more a loaf of gluten-free bread costs than equivalent regular bread) IF you can file medical deductions, meaning your medical expenses total 7.5% of your adjusted gross income. if your adjusted gross income is $40k, that means you have to document $3k of post insurance medical expenses. additionally, many accountants note that taking a deduction for the cost of food is likely to set you up for an audit, because that is a grey area - and it can be argued whether or not specialty products are necessary or a luxury.

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

Celiac.com Sponsor (A8-M):


maile Newbie
maile
Posted
(just want to clarify the tax thing...)

you can only deduct the extra expenses of the cost of gluten free foods (like, how much more a loaf of gluten-free bread costs than equivalent regular bread) IF you can file medical deductions, meaning your medical expenses total 7.5% of your adjusted gross income. if your adjusted gross income is $40k, that means you have to document $3k of post insurance medical expenses. additionally, many accountants note that taking a deduction for the cost of food is likely to set you up for an audit, because that is a grey area - and it can be argued whether or not specialty products are necessary or a luxury.

just a note, tarnalberry, your information is for US patients (eta, that sounded a little snippy, sorry tarnalberry, not my intention :blink: ), nb-canada is Canadian and the rules are somewhat different due to differing tax regimes. In Canada medical expenses:

Medical expenses for the taxpayer, the taxpayer's spouse or common-law partner, and dependent children under 18 are claimed on line 330 of the federal tax return. Only expenses in excess of the lesser of $1,925 (federal, for 2007) or 3% of net income can be claimed. The lowest tax rate is applied to the medical expenses to determine the amount of the tax credit.

the specifics on claiming for Celiac (for which you do require an official diagnosis) can be found here: Open Original Shared Link

tarnalberry Community Regular
tarnalberry
Posted

ooo! thanks! I'm apparently a little slow this morning. :D

curiousgeorge Rookie
curiousgeorge
Posted

I sent you a PM.

Those are not celaic tests by any stretch. I really hope you didn't pay for them :(

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. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    4. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    5. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    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
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • 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.