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I Need Verification If Correctly Tested For celiac disease

nb-canada

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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

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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.

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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 :(

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