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Peta

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  1. Took my 15 year old son to the doctor again today. He is still very low in iron and is awaiting a biopsy (hopefully in the next few months). He has had the HLA DQ2/DQ8 genotyping for Coeliac. The results were: HLA DQ2 Alleles DQA1 *05 Positive DQB1 *02 Positive HLA DQ8 Alleles DQa1 *0301 Positive DQB1 *0302 Positive The doctor seems to be pretty sure from these results that my son has celiac? Doesn't this just mean he is predisposed to coeliac but doesn't necessary mean he has it? I questioned that the serum test (antibodies) came back negative but he said that the genotyping for Coeliac gives a clinical positive to coeliac so we now just need the biopsy to prove it? Can someone tell me if this gene test says anything more than he carries the gene?... it doesn't mean a positive clinical testfor celiac though does it? I feel that you 'experts' can probably interpret the test results better than the doctor. Thanks for any opinions.
  2. Thank you for your replies. I didn't realise that false negative results were so common? Thanks for the advice about asking for extra samples when they do the biopsy. I will certainly ask for that. I won't trial a gluten free diet as I want the biopsy done first. The Gluten-free diet is so restrictive that I don't want to just 'presume' he's Celiac in case it may be something else all together. My sister and nephew are very sensitive celiacs and eating anywhere outside the safety of their homes is almost impossible. They seem to get 'glutened' everytime they eat out... through cross contimination or people just not reading the ingredients. Even hospitals are guilty of 'accidentally' providing foods and medications containing gluten (even when they are aware they are Celiacs). I am certainly not looking forward to it, if my son is Celiac... but I will be doing my utmost to ensure that he is totally gluten free (and well fed) at home if he is diagnosed. Thanks again.
  3. Hi, I would really appreciate any opinions on this. My son is 15 years old. He is 6'2" but only 60kgs... he is very thin but eats plenty. HISTORY: We suspected Celiac a few years ago. In 2003 the doctor ran a gene test for HLA-DQ2 (DQA1*05/DQB1*02) or DQ8 (DQA1*0301/DQB1*0302. It came back all positive for all four. Considering his symptoms (nausea, weight loss, low iron etc) the doctor sent my son for biopsy, even though the serum test showed negative for Celiac. The specialist at the hospital said that because the serological test for celiac was negative they would not perform a bowel biopsy.End of story. NOW: Recently (2011) I took my son back to another doctor because he had been unwell (random vomiting, lethargy, dizziness) and the doctor ran blood test... his iron levels came back VERY low. This doctor has also requested a bowel biopsy after strong symptoms, a strong positive gene test and VERY low iron showing malabsorption. My sister and nephew are diagnosed Celiacs so there is a family link. My question is... considering both times the serological test has come back showing negative results for celiac do you think that the Dr should be looking for other reasons for his extremely low iron levels/weight loss? How common is it for someone to be celiac and not show up in the Celiac blood test? I am just hoping that the biopsy is done this time. Sorry for rambling(but, believe it or not, I tried to shorten it) but I just wanted some opinions. Regards, Deidre
  4. Rumbles, Thankyou for taking the time to answer my post. I feel the more informed I am when we approach all of these tests the more I will understand about the results. I will certainly make note of your advice as I have heard of that before. Add to my list... dental problems (teeth growing above teeth...and bits breaking off!?) I feel satisifed that the specialists is performing enough test and procedures to get to the bottom of this.... hopefully. Thanks again, Peta
  5. Hi to all. I just want to run a few things by you all and see what you think. My 11 year old son has suffered GERD since he was born...he has tried many things and was referred to a specialist 4-5 years ago who did a biopsy for celiac whilst testing for GERD. The test was clear. Fast forward 4 years and his GERD remains... plus he has a new problem of a nail disorder in all 20 of his nails (flaky, spooned etc) so after being referred to another specialist this specialist is being very thorough running full blood tests including full iron levels, full celiac panel, as well as a ph level test and finally a biopsy. He is the CELIAC SPECIALIST of the very large hospital so I feel he is knowledgeable. My sons symptoms are: MAIN TROUBLE: GERD (daily) Bloated stomach Trouble sleeping Pains in his knees and toe/fingernail disorder with spooning of some nails(possible iron deficiency?) He is sometimes constipated Sometimes has diarrhea Has been known to have stools with white spots? Sometimes sore eyes Plus my sister, and my nephew have celiac, and my other niece has diabetes/celiac so it's in the family. He is NOT underweight...maybe a little overweight. He is NOT a sickly child and the symptoms do not seem to interfere with his day to day life... but I'm looking at his future! What do you think of any of those symptoms?
  6. I, like you, did not understand why everybody suspected of Celiac did not have a gene test taken automatically. I thought surely this would removed the need to be periodically tested for some people (those without the genes)? But after visiting a specialist I now have a better understanding why the gene test is not standard. My local GP referred my son to this specialist on the strength of the gene test. The specialist stated 'this is why the gene test should not be available outside hospital conditions'. She said that it was largely misunderstood by many in the medical field and that it was very complex, and as stated above by Rachel, it is not as straight forward as some may seem. The gene test is a valuable bit of information when used in conjunction with many other aspects of Celiac Disease. It is not a diagnosis on it's own. My son is DQ2 and DQ8, has classis symptoms, yet he does not have Celiac but has H. pylori (stomach infection) so often misinterpretation of the gene test can get in the way of a true diagnosis. Best of Luck, Peta
  7. Yes, she used that word in amongst all the talking she did? Do you know anything about it? Peta
  8. Hi All, Took my son for his appointment with the specialist. She assured me that my son does NOT have celiac, and proceeded to check for other causes for his symptoms. She was a specialist and is very informed on celiac. She said that although he may develop celiac at some later stage (or may not) that he definitely did not have it at present. She suspects he has an infection in his stomach, which explains his abnormal blood count and many of his symptoms (similar to celiac symptoms). It may have been that way for months, or even a couple of years, as the acid in his stomach does not allow it to heal. She has a few courses of action to try, and we are beginning with the simplest first. If this is not successful then they will do a biopsy next. I wish to thank all of you who took the time to answer all my questions when I was trying to work out if Celiac was my son's problem. Your answers were always interesting and informative. Hopefully the doctors diagnosis is correct and we are on our way to a healthier boy!! Best of luck to all your Celiacs, and Gluten intolerant people... it is a hard road but hopefully your persistence will lead to a happier, healthier life. Thankyou, Peta
  9. My son's tTg (which I presume is Tissue Transglutaminase IgG and IgA) was <20. The normal range was <20 so he appears normal there too! Yet she still said he needs a biopsy. Our local doctor pointed to the gene results on the screen and said "it looks like he is celiac" so in other words, not really sure she knows what she is looking for. I am seeing a specialist tomorrow to arrange his biopsy but she may also be able to give a clearer idea of what she thinks. Perhaps a biopsy is ordered on the strength of classic symptoms and irregular bloodwork (wcc, lympho, ferritin, etc). There is definitely something not right going on in his system. Tomorrow I should have a clearer idea? Hopefully! Peta
  10. I don't think even the doctor knows if they are borderline because other than '<20' there were no other figures printed, so we only know they were under 20 (which is normal) His blood test shows low white cell count, low lymphocytes and a low ferritin level. The doctor may have taken these into consideration but from what she said I think she is sending him for biopsy on the strength of his positive gene test. She is very uniformed when it comes to Celiac and she thinks the gene test means he has it!! (although I know differently) The doctor we are referred to now is VERY informed on Celiac so I will follow it through and listen to what he has to say. I have an appointment Friday and he may deem the biopsy unecessary, although I would still like him biopsied as he has many classic symptoms that need explaining. I guess, like everyone else, I am searching for answers. Thanks, Peta
  11. Just curious. My 10yr old son had the Celiac Panel done (5 tests). The normal range stated <20...... my sons results on these test was <20 but did not give the actual figures. Are the figures relevant if they are considered in normal range... how would I know if he was IgA deficient (or would this have shown up in the other parts of the test). I am surprised the doctor has referred him for a biopsy considering the results? It must be due to his symptoms, dq2 and dq8 genes, and irregular levels in his complete blood count?? or maybe his doctor just doesn't understand Celiac (which she doesn't)?? Any info? Peta
  12. Thanks. Knowledge is power, and the more I know the more I want to know. Peta.
  13. I did have a ridiculously long post written but then deleted it because I realise that I would be better off just asking the questions I needed to know (instead of a life story ).... 10 yr old boys FERRITIN level 19 (normal range 7-150). Although he is classed in 'normal range' could he still be considered Anemic? His white cell count and lymphocytes are just below normal range. So despite his negative celiac panel, these other tests combined with many symptoms could indicate Celiac couldnt they? Just want to be armed with information incase doctor tries to dismiss Celiac because of celiac panel being negative. I REALLY appreciate those who take time to answer my posts. Your time is not wasted because I really value every bit of information you can pass on. Thankyou, Peta
  14. I feel this is such an ongoing drama... but when I read the amount of time it took some of you to get a diagnosis I feel it perhaps isn't so long afterall. My 10 yr old son is awaiting a biopsy, which was ordered by his doctor who announced 'It looks like your son does have celiac'. After asking for a copy of his blood test and celiac panel I realised that she has taken the positive gene test (he's DQ2 AND DQ8) to mean that he has celiac... I know that this does not necessarily mean that but just makes him predisposed. When I read his celiac panel test everything was negative... he had Gliadin AgG & IgA, and Tissue transglutaminase IgG & IgA... Endomysial IgA NEGATIVE. They all showed <20 (normal range <20) Isn't it very rare to still be diagnosed with celiac disease (via biopsy) when ALL of the antibody tests were within normal range? His blood test showed slightly low (just below reference range) for White cell count and lymphocytes. He does have some symptoms such as underweight, nausea, tingling in the feet and sometimes hands, flatulence, and foul stools (but not diarreah). Am I putting him through an unecessary biopsy? Have any of your children been diagnosed with celiac despite 'ALL NEGATIVE' Celiac Panel? Thanks, Peta
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