<<Disclaimer: Verify this information before applying it to your situation.>> Hi all! A couple of weeks ago I asked about the reliability of blood tests & also about anybody who found gluten made them hyper. My reasons were that both my son and I have various CD symptoms but whereas one of mine has been fatigue, he is *very* active. We have both had negative blood tests, which made me wonder if there cld be a family trend. Thomas's activity level made the paediatrician (originally) do nothing following the original blood test. I received many replies - some time I hope to finish writing personally to everyone <G>. Here's a *brief* summary, first answers about "hyper" activity: ******* along with my celiac, I have attention deficit disorder. I know that when I get gluten it worsens my ADD symtoms. ******* Often celiac can mimic attention deficit disorder with hyperactivity - we can always tell when my son (now 7 1/2) has had gluten because his activity level goes way up - he cannot stay in his seat, etc. (his eyes dilate too). When he is gf, he does not have this problem. His teacher has charted and confirmed this. ****** Sue - the only thing I can tell you is that my 20 month old son was dioagnosed with CD (he had a biopsy after numerous other tests showed nothing - cat scan, ultra sound, berrium enima, antibitocs . . ) and the main symptoms he had were the foul stools, fair skin, huge pot belly and his growth had slowed incredible down. NO ONE in my family could have believed he was sick at all - he was the happiest most active energetic child around. So don't think for a minute because your child is active he is safe from CD ****** It is the gut aches that seem to make my daughter feel fatigue. When we give her Levson (for cramping), prescribed by her doctor, the pain subsides and she is *very* active again. If your son is not suffering gut pain then it makes sence to me that he can be active and still have other celiac related problems. ****** I would become quite hyper after ingesting gluten. Late at night I would clean house, excercise, etc. until I would finally crash (overcome with tiredness) and go to sleep. ****** My son (diagnosed at 15 mo.) was also fairly energetic, especially in the doctor's office for quite a while when he was "sick" (vomiting every day). He also was a large baby and continued to grow a little, before it tapered off. The doctor assured me he "couldn't possibly be sick - he hasn't lost enough weight and besides, look at that BELLY" (as if a very bloated belly is a sign of health). ****** As far as activity is concerned, I don't think that is a determining factor with celiac in children. My 6 1/2 year old is the most athletic child in our whole family of six children. ****** Maureen has always been very active, and particularly loves sport. Most of her friends at school have been boys because she loves playing "rugby and soccer" (informally) at lunch break. She was also in one of the school's miniball teams (like indoor basketball) and kept up remarkably well considering her small size and that this was during winter just prior to her CD being confirmed. ****** My daughter never sleep at noons, and would go until 10pm at some days. And she was active during all this time. I would not say that she was hyper, but sure much more energetic than our son at the same age. After she went GF, she started to have rests at noon, but no naps. ****** My son is very active and doesn't really have any of the typical outward symptoms. I don't think gluten makes him hyper, but the intolerance has not affected him that way. (We started seeing the GI doctor because he kept throwing up, but that had actually stopped before we got the diagnosis.) So in my opinion, not all Celiacs are "lethargic" like the doc kept asking me! ******** This reply dealt with both -ve blood tests & hyperactivity: Our 5 year old daughter sounds like your son. She was very allergic to milk, so when we stopped it, we thought the "hyper" child would go away. It didn't. She was negative for celiac in all 3 types of blood work, and an intestinal biopsy. After stopping glutens on our own, our child is much "calmer" until she sneaks gluten - then she becomes a "holy terror." I have celiac, and so does our son. Even though our daughter tested "negative", we find that glutens make her very hyper. So we have one more to cook gluten free for, and it's worth it. She's a pleasure to have around now. *********** And now comments about blood tests: ******* from what I have learned, a "positive" blood test is almost 100% accurate, but a "negative" blood test is not. .... I do know a family who had negative blood tests (mother and daughter), but positive biopsies. ******* The IgA antigliadin antibody test can be a false negative if your child and you are IgA deficient. This is why the IgG test is usually run along with it as this one will pick up on Celiac as well as many other completely unrelated conditions such as lactose intolerance. ******* My son had identical symptoms, but his blood tests were negative too. We did not even try the biopsy. Our pediatrician (practices in the US, trained in Great Britain and Canada) diagnosed him (at age 2) as celiac anyway - because he has seen it happen before. His bottom line is - the diet works. ******* Here in Canada, the blood test is rarely done as there are a high number of false negatives. A gastroenterologist told me that even if it's negative, they will do a biopsy anyway in most cases. ******* My daughter came back negative on all three tests IgG, IGa, and Endomysial. We insisted on having a biobsy test. Our doctors' office was cooperative although I'm sure they are sceptical. They also have great confidence in the blood tests. ******* yes, it is possible to have a negative blood test and still have celiac. My son tested negative at 11 months. He had many of the similar symptoms your son has had, diarrhea,(lots) and poor growth and pale complexion and somewhat on the irritable side. A biopsy was done when he was 13 months old because all other recommendations (changing formula, etc) did not help his diarrhea or help him gain weight. The biopsy confirmed damage to the villi...and CD was suspected though not 100% confirmed because he also showed an inability to process disaccharides, that is, he could not process foods with sugars, starches and lactose in it well at all. He was placed on a highly specialized formula and a very restricted diet...until his diarrhea improved greatly. He didn't really start to respond until about a year after being diagnosed...now he's doing well and he's 2 1/2 years old... ******* There was a long response about blood tests by Tom from Technical Service on Oct 28 1998. I presume the full text is in the archives. According to Tom "IgA antibodies are less sensitive (than IgG antibodies) but more specific...In clinical trials IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have CD. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for CD. Therefore, a positive result is a strong indication that the patient has the disease BUT A NEGATIVE RESULT DOESN'T NECESSARILY MEAN THEY DON'T HAVE IT. False positive results are uncommon but false negative results can occur.... on the other hand, the IgG antibodies are 91% specific and have an 87% sensitivity...This test might yield false positive results but is less likely to yield false negative results." ******* Our son is 3 1/2, and dropped from the 75th percentile to below the bottom very rapidly once my wife stopped breast feeding and we started to introduce normal food. He had all the symptoms of CD, but failed all the tests. We have had them repeated twice, both times negative. ......... On the irritability we are now GF for him totally, but even the slightest mistake changes his humour noticably. Basically, CD is only a recently discovered disease (late 50s), so the medical science groups only know a little. And without their tests they have no answer. There are many people on this list who seem to be atypical CDs. So forgive my cynicism, until medical science catches up with common sense you may have to assume CD or some such judgement. We have done so and in the past 3 weeks have gained .4 kilos. ******* Have your doctor do a blood test to determine the child's IgA level (this is a blood test for an immuneglobulin level----not the IgA anti-gliadin level or the anti-endomysial level which is believed to be specific for celiac disease). If it is below 5 he is IgA deficient and the celiac blood screening test will not be valid. The child will not have enough circulating IgA to make the test positive. Even if the level is over 5 but is low for a normal for his age--it may be too low for the test to be valid. Often celiacs have low circulating IgA levels. I have this and so do three of my daughters. Blood tests were negative, however, my biopsy was positive and so were the biopsies of two of the girls. One daughter seems to have escaped this diagnosis. Many doctors are not aware of this--it took Dr. Joe Murray and Dr. Fasano here in the US to tell us this. ******* End of summary, now an update: Well, that's a much shortened version of most of the replies I received. I was overwhelmed not only by the response, but also by the support and the number of people who had similar experiences - Thank you all. I included so much of the original msgs because they contained a lot of info which I felt you don't get from the books or the doctors (no slur on either here, just that people's personal experiences say a lot). What have we done? We saw the paediatrician on Mar 22nd and Thomas had the blood tests & bone x-ray repeated on Wed 31st. They even wanted a stool sample this time, tho that may have been to keep us parents quiet <G>. the paediatrician seemed disappointed that Thomas hadn't had a growth spurt & was still having diarrhoea - her attitude this time seemed to be "This has been going on a long time, we'd better find out why" ... or maybe that's just my interpretation. We should find out the results in the next 4 weeks - I told the paediatrician that if they're negative again I want to try a GF diet anyway. She seemed OK about that but the dietitian (who in spite of trying a milk-free diet has always seemed to think it was CD) wants them to just do a biopsy before changing the diet. *If* the tests are negative again I'll let them argue about it for a few days & then demand action of some sort (this has been going on long enough!!). BTW the paediatrician referred to the endomysial test as the "Gold standard" wihtout even seeing my printout of the document about non-invasive tests (as detailed in the welcoming msg). They also did a blood count this time, to test for anaemia (I grilled the pathologist before she got away!). Thank you all for so much support and information - it was very helpful and gave us a feel for what we should expect and how we could argue (tho I didn't actually need to argue in the event!). I may have to unsub for a short while, but I'm sure I shall be back and will let you know what has happened to both Thomas and me. Sue O <[log in to unmask]> in England