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missyg
Joined: 18 Jul 2008
Posts: 2
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 Posted: Sat Jul 19, 2008 7:23 am Post subject: New and needing help to understand test results |
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Hi everyone,
I'm new to this forum. My name's Missy and I and thought to sign up because my 9 year old son's been having trouble with bowel movements since he was just a little tyke. Originally I thought he just didn't want to potty train, but obviously we're past that age now :wink: and something is still wrong. I'm at my wits end in trying to get help for him - every doctor I see seems to just say it's a behavioural issue and that it will change eventually...
He suffers with constipation and sticky poos and can go a really long time between bowel movements (sometimes up to a week and a half, and even then it is not all out) (isn't it glorious what we can discuss these days!)
He has a few other health and diet "problems" like sometimes being rather lethargic and tired, he's kind of slim but big in the belly and he also seems to get non-specific stomach uncomfortableness - I'm not sure what causes this. He doesn't like eating fruit at all and is not all that fond of vegetables. He craves wheat based products like bread, biscuits, crackers and pasta.
I have seen a naturapath who said she thought he had potential for a normal bowel. The chemist gave us stool softeners and suppositories but these have not resulted in a long term change.
Last year we tried an elimination diet and I **think** he may have improved a little when not eating salycilates (in fruit and some vegetables) but I'm not all that sure.
This last week I had him tested for CD (my sister is coeliac) and I have the test results back, but even after trawling the internet, I'm still not sure what it all means.
Is there someone out there who could decipher it for me please??? I would appreciate it so much as our follow up dr's appointment isn't for weeks yet...
[quote]
Coeliac Disease Antibodies:
Gliadin IgG Abs - 4 units - <20
Gliadin IgA Abs - 7 units - <20
Comments:
AGA has high sensitivity (>85%) and specificity (>85%) for coeliac disease (CD). The AGA IgG is useful in patients in whom AGA IgA are not reliable such as in children <2 years and in patients with either partial (<50% of reference range) or absolute IgA deficiency. CD should be confirmed by histology. AGA results from 20-30 units are considered borderline.
IA
Tests Completed: Gliadin abs
[/quote]
Does anyone have any suggestions about what might happen from here on in? Any ideas about action I could take to help my son? I would be so grateful.
Eventually I want to try him on a gluten free diet regardless of what happens with the doctors, but I'm not starting that yet as I understand that if any more tests are required he will still need to be earing gluten for them to work.
Thank you so much for your help, I really appreciate it so much as I hate to see my son so miserable about something that should be a lot easier.
Missy |
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cruelshoes
Joined: 23 Sep 2005
Posts: 3556
Location: Washington State
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| Posted: Sat Jul 19, 2008 8:43 am Post subject: |
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Hi, Missy. I'm glad you stopped in. My son is nine too. Here in the US, the celiac blood panel consists of 5 or 6 tests. You have posted 2 of them. I'm not sure how things work where you live, but here, the bloodwork consists of:
Antigliadin IgA and IgG (that's what you posted above)
Anti-tissue Transglutaminase Antibody (tTG), IgA and IgG
Anti-endomysial (EMA), IgA and IgG
Total serum IgA (this rules out IgA deficiency)
The problem with the Antigliadin bloodwork is that it has largely fallen out of favor because it it not as specific to celiac as come of the other results (Ttg and EMA). Is it possible that they ran the other bloodwork and just didn't give you the results? What did your doctor say the next step was going to be? Does he/she want to proceed to the endoscopy? Generally, that is considered the gold standard for diagnosis.
I think there is definitely a case to be made for celiac based on his symptoms and the family history with your sister. While we are on the subject, you really should think about getting tested as well. All first degree relatives should be screened, whether or not there are symptoms. After I was diagnosed, we had my son tested and he was overwhelmingly positive, despite the fact that he had no obvious symptoms at all.
You are very wise to keep him on gluten until the testing complete. Removing gluten now could result in a false negative if you are proceeding to the biopsy or more bloodwork.
Keep us posted on how you are doing. I hope this post has been helpful.
_________________
-Colleen
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missyg
Joined: 18 Jul 2008
Posts: 2
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| Posted: Sat Jul 19, 2008 8:56 am Post subject: |
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Hi Colleen,
Thanks for your reply.
I should have mentioned that I'm in (country) Australia.
I'm sure the Dr did not request any other tests and I didn't know there were more that could be asked for. (I asked for this one).
She (Dr.) hasn't made any comments yet, my son's follow up appointment isn't for 3 weeks yet. In fact I still don't really understand what the test results mean.
Thanks for your comment regarding my own testing. I will certainly look into that. Should I have all of my children tested even though I don't see any symptoms in them?
Thanks again, Missy |
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cruelshoes
Joined: 23 Sep 2005
Posts: 3556
Location: Washington State
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| Posted: Sat Jul 19, 2008 9:07 am Post subject: |
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Here's a little more information about the antigliadin antobody testing:
http://americanceliac.org/diagnosis.htm
| Quote: | What are the different antibody tests available? Can there be errors in testing?
The blood tests can be divided into 2 different types of antibodies: those which are “anti-gluten”, and those that “anti-self”. The “anti-gluten” antibodies are the anti-gliadin IgG and IgA. Ig stands for “immunoglobulin” or “antibody”. The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase IgA. The tissue transglutaminase IgA antibody is often abbreviated as “tTG”. Each antibody test varies widely in its sensitivity and specificity for predicting whether the disease is present in any individual. It must be remembered that NO test in medicine is correct 100% of the time in each person!
There are also several conditions which may yield false negative antibody results. A false negative means that the patient actually has the disease, but the test result is negative. One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency. If a patient has a low total IgA level, the antibodies may be falsely low. This is why I always recommend that a patient have a total IgA level drawn at the same time the antibody testing is done. Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results. An inexperienced lab can misread the anti-endomysial IgA test, which requires someone to read a slide through a special microscope. It is possible that a celiac patient could have a positive antibody test at one lab, and a negative test at another. This is because different labs may use different commercial test kits, which vary in their sensitivity and specificity. And lastly, a person has to be ingesting gluten at the time the antibodies are drawn. A gluten-free diet will make the antibody tests negative.
Let’s discuss the different antibodies and what the strengths and weaknesses are for each.
Antigliadin antibodies
The antigliadin antibodies IgG and IgA recognize a small piece of the gluten protein called gliadin. These antibodies became available during the late 1970’s and were the first step towards recognizing CELIAC DISEASE as an autoimmune disorder. Antigliadin IgG has good sensitivity, while antigliadin IgA has good specificity, and therefore their combined use provided the first reliable screening test for CELIAC DISEASE. Unfortunately, many normal individuals without CELIAC DISEASE will have an elevated antigliadin IgG, causing much confusion among physicians. The antigliadin IgG is useful in screening individuals who are IgA deficient, as the other antibodies used for routine screening are usually of the IgA class. It is thought that 0.2-0.4% of the general population has selective IgA deficiency, while 2 to 3% or more of celiacs are IgA deficient.
If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. Younger children make less IgA than older children and adults. A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases. These antibodies may also be slightly elevated in individuals with no obvious disease.
A strength of the antigliadin antibodies is that they are ELISA tests. ELISA is an abbreviation for “enzyme-linked immunosorbent assay”. This is a rapid immunochemical test that involves an enzyme, which a protein that causes a biochemical reaction. An ELISA test also involves an antibody or antigen. ELISA tests are utilized to detect substances that have antigenic properties, primarily proteins, such as gliadin. The importance of an ELISA test is that is it rapid, inexpensive, and run by a machine. Thus the results are independent of observer variability. The TTG test is also an ELISA test. This is in contrast to the antiendomysial IgA, where a slide has to be made, and a person has to look at it through a microscope. These are more prone to human error. |
The Antigliadin IgA has a good specificity, but is less sensitve (it picks it up better, but less often), and the antigliadin IgG has good sensitivity, but is less specific (it detects more often, but there are lots of other things that cause it to be positive).
If it were me, I would ask for the complete panel over the phone so the bloodwork results would be back in time for the appointment that is already scheduled in 3 weeks. It's a bummer that he would have to get stuck again, but you would have a whole lot more information in front of you to discuss with your doctor. Again - this is how it is done in the US, so there may be slight variations in AU.
Good luck. We are here to help you figure all of it out.
_________________
-Colleen
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aklap
Joined: 02 Oct 2004
Posts: 10972
Location: WI, USA
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| Posted: Sat Jul 19, 2008 5:15 pm Post subject: |
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G'Day Missy!
Welcome to the board! I'm running a bit short on time, but you might register [it's free] for Dr. Rodney Ford's Discussion board and post the same question/results there. He has a forum there specifically for that and answers these questions himself. Dr Ford is from NZ and is known as Dr. Gluten. He not only is aware of Celiac Disease, but also Gluten Syndrome [what we call Non Celiac Gluten Sensitivity]. He is one of the handful of doctors that understand that gluten can cause problems even though it's not classified as CD.
The AGA tests will help in determining is gluten is a problem. There's certainly a genetic link since you sister has CD.
Good luck, I hope you find the answers to your son's health problems! Please, keep us updated.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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