5 replies to this topic

[alesusy]

First of all thanks everybody for the existence of these forums.

I am still waiting for a firm diagnosis of my celiac disease. I had a gastro on December 3rd and the results should have arrived in 15 days but they are still not ready, because there was stupid Christmas and people in the hospital lab here in Rome (Italy) are not paid for working on holidays. I'll call again on Monday - January 7th! However, I have been on a gluten-free diet since December 2nd. I just would like to be SURE - and I'm getting to be really angry.

So I'm posting the results of my blood tests hoping that you can explain better than my doctor what they actually say. I have looked around on the net and here, and concluded that these results are pretty big indicators that I AM celiac (well, the doctor said as much, but I had not understood why, or maybe he explained and it did not register). But still, I'm sure there are experts around here and I would really appreciate help in understanding.

There are actually two sets of results, the first made in April 2012 and the second in November (why two sets? it's another sad story but I won't bore you with it now. However here in Italy you have to get your bloodwork in a State hospital to access certain benefits) - I'm transcribing the Italian terms but I'm sure they're easy to understand

APRIL 2012

Endomisio AB Anti IgA 1:20 (present =>1:20)
Gliadina Deamidata AA IgA 6,1 (positive >5,5)
Gliadina Deamidata AA IgG 17,0 (positive >10)
Transglutaminasi Anti IgA 46,0 (positive >9, significant >16)
Transglutaminasi Anti IgG 3,8 (positive >20)

The second set of tests in NOVEMBER 2012 repeated without the endomysium

Anti Transglutaminasi IgA 78,9 (borderline >9, positive >16)
Anti transglutaminasi IgG 12,4 (positive >20)
Anti gliadina IgA deamidata 12.5 (positive >5,6)
Anti gliadina IgG deamidata 14,7 (positive >10)

My B12, iron, potassium, sodium levels were in the normal range; the only one out of range is ferritin which was very low at 10 ng/ml (range 15-150)

Now from what I understand, these results are pretty clear (I also notice that the Anti Transglutaminasi IgA got worse from April to November, from 46 to 79...). But I wonder why the Transglutaminas IgG are negative.

I really hope the biopsy results will come in soon. You may tell me I don't need them to know, but here in Italy you have a right to subventions for buying food and free clinical tests if you are a confirmed celiac with a small intestine biopsy to prove it; you are then enrolled in a State hospital program etc etc. Which means anyway I don't feel like a bona fide celiac until I have the results in my hands.

I will be very grateful for your comments

a.

[mushroom]

Your tTG IgG (on both occasions) was the only test that was NOT positive. The IgG is normally only the alternative test, run only when you do not produce normal quantities of IgA, which is the main anti-gliadin antibody. Your IgA test results are clearly positive, and even the IgG on the deamidated gliadin peptide was positive on both occasions. I'm not sure why they ran the bloodwork twice, when the first time was clearly positive.

Good luck with your biopsy results on Monday.

[alesusy]

Your tTG IgG (on both occasions) was the only test that was NOT positive. The IgG is normally only the alternative test, run only when you do not produce normal quantities of IgA, which is the main anti-gliadin antibody. Your IgA test results are clearly positive, and even the IgG on the deamidated gliadin peptide was positive on both occasions. I'm not sure why they ran the bloodwork twice, when the first time was clearly positive.

Good luck with your biopsy results on Monday.

Hi Mushroom and thank you. I can answer about the double bloodwork, although it's sort of a horror story. I was tested because I had bowels problems we all know about and got scared when I started having pains. The doctor I went to ran a whole panel of test, including a colonoscopy which I asked, and a gastro because I had reflux as well. I have a good medical insurance, so I got them done privately (in Italy you can get all these things in a State hospital for free but you have to wait months). Surprise, surprise, the genius did not take tissue for a biopsy, apparently not even thinking about celiac disease (I sure wasn't). I got also a breath test and I resulted lactose intolerant, which he announced to me in May. The rest of the bloodwork literally sat in the laboratory HE had advised for about two months: I was sure he had seen the results, and since they were VERY expensive I was in no hurry to go and pay. I finally did, at the end of July. Well, I'm no expert but obviously the results were off range. However I thought the values were probably not very important ("IgA" and "IgG" meant nothing to me).

In October I was feeling worse and took up those tests again and called him and then faxed him the results. He then said that yes, the results were positive but since five months had gone by I'd better have the same tests again.

I changed doctor in a hurry and went to my GP who counselled me to go to a State hospital because if I am celiac I have to enroll in a public program to get benefits. Of course, the hospital asked me to re-do the bloodwork anyway because they didn't trust the first results. Then I got the biopsy and there I am, still waiting for the results. Six months wasted. Apart from not eating lactose, which I cannot have for now, but it's probably - I devoutly hope - just a consequence of celiac disease and might regress. Let's hope.

Moral of the story: if you have a GP you trust, talk to him first. I should have done so, but - it's weird - since I hadn't been feeling well for about two years or more, I had been to see him several times for a host of not-feeling-well symptomps, including what I thought was IBS, and he had given me stuff which had done nothing, and I felt ridiculous to insist. And yes, he might have thought about celiac disease, in fact, so it is his fault too. But we all know that doctors are not automatically trained to think about celiac disease...

[mushroom]

Yes, at first as a celiac the odds are you will be lactose intolerant until you heal, but after that you should be fine. I was lactose intolerant for years before gluten free. Didn't know anything about anything in those days. Didn't even realize you have to be your own doctor I learned bad habits in USA because they don't like that here in New Zealand, you are supposed to say "Yes, Doctor" (especially to the specialists ) It is considered very nervy to have an opinion different to the specialist I do trust my GP, though, mainly because she will do practically anything I ask, and is not afraid of losing face by saying "I don't know, let me see what I can find out".

[nvsmom]

Looks quite positive to me too...

What a run around you had to go through with the testing! Ugh! I would be frustrated too. I hope your endoscopy goes well and gives clear results so your dealings with doctors is smooth sailing after that.

When you get your diagnosis, you might want to get your B, D, ferritin, calcium, potassium and iron levels checked. Many celiacs are low in their vitamins which can cause anemia, osteoporosis or other problems. You might want to get your thyroid checked too since about 1/10 of us have Hashimoto's thyroiditis as well. Those tests include TSH, free T4 and T3, and TPO Ab.

Best wishes!

[alesusy]

Hello again everybody
My results are in and the biopsy - as surmised - is positive. To be more precise I'm a 3b Marsh type.

Doc gave me a whore range of tests to do - gastric mucose, GAD, MOC, antibodies, spleen, check of several organs etc plus bloodwork on the IGG and IGA every 4 months in the first year. He's sure I'll recover in about a year.

Me, even if I knew it already, I'm somewhat in shock. Most of all I'd like to know WHAT I'm going to recover from. The extreme fatigue of the last years, for instance; what about the joint aches I've had - is that getting older, or is it celiac? Am i going to recover something in my eyes as well? Will my skin get tighter? (Is it wishful thinking or is it smoother and silkier now than a few weeks ago?) etc etc

And my main trouble - how am I going to eat when I travel. Well. There is something weird in thinking that for at least a few years (how long?) my body simply hasn't been absorbing nutrients. Already if the fatigue of the last years disappeared it would be great (Yes, I'm feeling better than two months ago, I can measure it in the quantity of things I do every day AND because I don't have any more that feeling of "let's stop and take a breather please", or maybe I should say that feeling of not having enough oxygen going around - sudden fatigue - you know what I'm talking about - But since I'm on leave from work, unpaid leave as it is, I don't know whether that's why)

have a good night, I'm joining the club