Test Results In -- Celiac Or Something Else?

[msharnoubi]

Hi everybody.

Please excuse the terribly long post. Normally, I don't talk that much but just wanted to make sure to provide all the relevant information.

I need help with these test results please:

* IgA Quantitative:**********149 mg/dl*****Ref range: 70-400

* Anti Gliadin IgG:***********Negative******Ref range: Negative at serum dilution 1/40

* Anti-Endomysial (EMA) IgA:**Negative******Ref range: Negative

* Anti TTG(Endomysium) IgA:**Negative 3****Ref range: Negative-< 20 --- Weak Positive 20-30---Positive-> 30

The lab didn't return the Anti Gliadin IgA.

I had been consuming gluten normally my whole life. I just tried a gluten-free diet for 6 weeks then decided I should do the tests. Consequently, I returned consuming gluten (I didn't know I loved it that much) for 2 months before performing the above tests.

I don't think I can do any more tests like genetic screening or biopsy because I don't think they're available here in Egypt and if they are I don't think I can afford them right now. In fact, I'm not quite sure I can rely very much on the blood tests given that the lab's staff had to search for a while in their manuals before finding the tests not to mention the contradictory answers I received on the availability of the tests when I contacted different branches of the same lab!

In any case, based on these results, should I make the Anti Gliadin IgA or are the above tests enough?

Now the important question, should I believe my physician in his diagnosis of IBS or is it celiac or should I consider something else?

To help answer the above question, please allow me to briefly sketch my condition:

* Male, age 39

My major symptoms are:

***Mental & psychological symptoms:

* Fatigue and lack of energy that leads to increased sleep. (Frequent.)

* Somewhat weakened mental abilities (i.e. memory, alertness, concentration, creativity,...). (Frequent.) All the people around tell me they don't notice them but I do.

* Low grade depression. Personally I'm convinced it's due to the above mentioned points.

***Physical symptoms:

* Gazes, bloating, abdominal fullness. (Frequent but not very bothersome.)

* Low back and joint pain. (Infrequent.) Only when I eat some foods coupled with stressed

* Lactose intolerance

* Heartburn, dyspepsia. (Not very frequent and also not very bothersome.)

* Chest pain. (Infrequent)

* Rhinitis, blocked nose. (Nearly always)

* Abdominal pain if I'm constipated for more than 4 days which doesn't happen a lot because I take laxatives the 3rd day.

***Diagnosis:

I've been diagnosed by physicians as having IBS by some and Dysthymia by others. In addition, I've personally considered other conditions on my own; most notably CFS but decided it wasn't very probable especially because I don't have low blood pressure and I feel better after exercising.

I'm not very troubled by the GI symptoms and don't mind living with them. However, I would be very happy to find relief from the mental symptoms. Although, in point of fairness, I have to state that I'm currently very happy and very grateful, thank God. But we can always make room for more happiness.

After knowing about celiac and considering I could have it, I started paying attention to how I react to gluten. I found that eating gluten doesn't change my symptoms unless I eat too much. However in this case, I'm not sure if my symptoms are due to gluten or to eating too much especially that eating too much of a lot of foods can give me similar or worse symptoms (milk and soy products for example).

So any advice is appreciated.

Thank you

Mohamed

[nora-n]

Hello, I think you posted before asking about which tests to get, or was it someone else from Egypt?

Now the first test was just to check if IgA type tests (any tests based on IgA) are valid. Your total IgA is somewhere in the middle.

The other tests are the right ones for celiac too.

It happens they are negative (but the ttg test does have a number, it is not 0)

I am sure they ahve the biopsies in Egypt, those are quite basic. Doctors surely do biopsies in the esophagus, stomach and duodenum and the other way round all the time. It takes just a few minutes and here in europe only small children are sedated, we grown-ups get it awake.

The time off gluten very likely has made it difficult to get some definite blood test results....it is quite common. If you still suspect celiac and want a diagnosis, you will have to consume gluten for some more weeks and then the TTG test would be enough i think , since it is already in teh rising. Some people need several tests until they turn positive.

You know the blood tests are calibrated to only show positive when there is significant villous damage, the blood tests are designed to be a bit insensitive....(because the biopsy is the gold standard so they absolutely do not want any positives unless the biopsy is positive...)

Sso you can either go on eating gluten adn take the TTG IgA test again in a while, and maybe even repeat it, or jsut try gluten-free, totally gluten-free for a year or two and see if things improve.

For other stomach issues, by the way, there is this old diet stricter than gluten free, older than the celiac diet, the SCD diet. It even cures Mb.Crohn and colitis. ssome celiacs need to be on that one, plus the crohn-colitis patients. Of course main stream medicine does not know anything about the SCD diet but it is really quite old, older than gluten-free.

I know that Egyptians have a lot to do with Italy, and Italian doctors are very aware of celiac disease. All children are screened for celiac there. Are there some italian doctors by chance in egypt? Can you go there for holiday? Can you take contact with the italian celiac society ? Maybe there is one egyptioan doctor who has studied there?

Added: with your normal IgA, the celiac ttg self-test could be just as good as the hospital test. It sells in some countries in Europe in some pharmacies and by mail order. You can take the test at home after some more weeks of gluten to see if it starts turning positive. Then the hospital test shouls be positive 8unless they have a very very high cutoff adn need to adjust it down, since the self test developed by Matti M

[msharnoubi]

Hi and thank you for your reply.

Yes, you're right we have biopsies here but as most doctors aren't familiar with celiac, it won't be of great value. How can I trust his diagnosis when most probably he doesn't know what effects it has on the intestines and what to look for?

As for Italy, going there would be fun I guess but unfortunately, I can't do it.

Mohamed

[Jestgar]

If eating less gluten (or soy or milk) makes you feel better, try eating none of these for a month, then add them back one at a time. You can decide, based on whatever reaction you may or may not have when adding them back, whether or not you want to keep them in your diet.

You are in charge of your health, and you can make an informed decision about what you want to eat.

[tarnalberry]

The dietary response IS a valid test (and many doctors will accept it as such, but this practice varies widely). If the diet makes you feel better, I say go gluten free. If it doesn't (and by that, I mean if three months gluten free makes no difference), then you might have "IBS". BUT, as far as I can figure out, IBS is still caused by the immune system in the digestive tract overreacting to something. Maybe it's not gluten, maybe milk, or soy, or some other food(s). So, you may need to do some experimenting with your diet to figure out what keeps YOUR system happy, regardless of what other people think is normal to eat.

[msharnoubi]

Thank you all for your valuable feedback that helped me make up my mind.

I think I'll partly do as "tarnalberry" said and will start an elimination diet and will let wheat be the last item to add so as to make sure I've been more than 3 months gluten free and try to figure out how things will go.

But I guess I'll start the diet the first day of the new year. Now I'll have a break with a lot of delicious gluten

May be if I get to something, I'll post it here just in case someone has a similar condition.

Wish you all a healthy life, happiness and especially peace of mind

Mohamed