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About Lindsey1978

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  1. Hello everyone, I was going through some paperwork and found my sons biopsy results. The dr said the biopsies don't suggest coeliac. Wondering if I'm right in suspecting that it indicates early coeliac? He is 9 and had low positive bloods and has responded well to gluten free diet. My older son will most likely be seeing the same dr in a few weeks and I want to have as much info on my side as possible. Thanks to everyone who has responded on my other threads. Biopsy: 6 fragments of duodenal mucosa. One or two slightly short villi are present. There appears to be mild crypt elongation in two fragments with mild nuclear hyperchromasia but significant crypt branching is not seen. Parasites or granulomas are not present. Thanks
  2. So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world? Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi. It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it. Makes me so infuriated I just laugh about how I already seem to know more.
  3. Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
  4. He had the dpg igg as well. That came back at 50, normal is under 20. It's the waiting that is hard and the reluctance of Drs to diagnose. His diabetes educator has already said they won't pay attention to those results for 3 months and then they'll test again. If they're still high they will look at the next steps. Gp seems a bit more ready to proceed now so hopefully he will get the referral sorted so we can have a definite answer before too long.
  5. His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......
  6. Thanks desirun. I have takenhim off gluten and he has improved out of sight. Only times he hasbeen sick since was when he ate something with gluten. His 14 yr old brother has just been diagnosed with type 1 diabetes and now coeliac screen has come back positive for him as well. Ttg was 745. normal is anything under 20. Waiting on gene test for him before scheduling biopsy. Makes it more likely that my younger son does have coeliac now I think. Will also be getting my daughter tested asap.
  7. Hi everyone. My 14 yr old son has just been diagnosed with type 1 diabetes. They did a coeliac screen as well and just got the results back. Ttg 745 should be below 20. Igg 50 should be below 20. My youngest son has been tested for coeliac previously with inconclusive results but has responded well to a gluten feee diet. The drs have mentioned that it could be a false positive due to his diabetes and I'm just wondering if anyone else has been in this position? Even with diabetes his results seem very high for a false positive. Many advice or similar stories would be greatly appreciated. Thanks.
  8. Hi everyone. looking for some more advice. My 9 yr old has been sick for about 8 weeks now with various symptoms but not enough for the Drs to pinpoint anything. He's had 2 "low" positive coeliac screens and just had a scope on Friday. The Drs seem to be very reluctant to diagnose with anything, just saying it's a bug (he did pick one up in the middle of all this but multiple tests show this is not the cause of all his symptoms), its psychological and sometimes kids are just sick. I took him to a nutritionist who has said coeliac or not she would advise gluten free and lactose free based on his history and test results. I'm happy to do this because it can't hurt and so far the Drs are kind of if we can't diagnose anything there's nothing wrong and just deal with it. Dr rang today with biopsy results which show minor abnormalities but still not clear on what it is and won't diagnose but said to keep eating gluten and will recheck bloods and possibly do a second biopsy in 6-12 months. I just don't understand why it's so hard. If they really don't think it's coeliac that's ok, but why the insistence of staying on gluten. They did do bloods again but he hadn't got those results yet. If they're ruling out coeliac but not looking at anything else but telling us to keep eating gluten why? Sorry I am just so confused and upset and had a plan to get my little boy off gluten and hopefully feeling better whatever the biopsy said and now I don't know what to do. He has shown some improvement but still sick and out of sorts. It seems that at the moment he is breaking down. A nose infection and inflamed ear is the latest after hives, mouth ulcers and vomiting with severe stomach pain for the last 8 weeks. Not to mention being tired and lethargic and complaining of joint pain. And his eczema is making s comeback. What would you do?
  9. Thank you so much for the responses and links. The more you look into it the more interesting it is. My son was prescribed maxor20 to reduce stomach acid so when he did vomit it wouldn't burn. I switched him over to lactose free milk almost a week ago and as he was having trouble keeping the maxor20 down he hasn't had that for the past 4 days. Yesterday and the day before are the first two days he hasn't vomited in 7 and a half weeks. Milk or meds? Who knows but we're happy that it's let up. In hospital dr was talking about delayed stomach emptying but was saying that could be the root of all his problems. No mention of the meds contributing to making it worse. Our appointment is today so will see what the Gi says this time. Thanks again, I appreciate it.
  10. He suddenly got sick. Vomiting, bad stomach pain, pale, dark circles under his eyes. Gp did a whole bunch of bloods just to see what was happening and threw the coeliac screen in as an afterthought really. It's been well over 7 weeks where he has vomited every day often 5-6 times a day. He has been admitted to hospital twice and twice I've been told that sometimes tummy pain and vomiting is just unexplained in kids. I get that but surely after 7 weeks it should be taken a bit more seriously. I feel like their dragging their feet in diagnosing with him anything. They keep telling me they don't like putting kids through unnecessary procedures so are just waiting for whatever it is to fix itself. Frustrating because they keep mentioning a scope but won't commit to it yet I have to keep feeding him gluten until they finish testing. I know that's right but it's hard to keep feeding your kid the thing that could be the thing that's making him sick. Will wait and see what the Gi comes up with on Monday but I really hope they pay attention to these latest test results so we can get the ball moving. Coeliac or not I do believe he needs a scope to see what's going on in his poor little tummy.
  11. Hi everyone. My 9 yr old tested low positive on deamidated gliadin igg 24 (normal less than 20), and tissue transglutaminase iga 24 (normal less than 20) in April. Doctors weren't convinced as they were low positives and ordered gene testing. Positive for 2 genes. Still not convinced so ordered new screen. New results deamidated gliadin igg 24 (normal less than 20), and tissue transglutaminase iga 29 (normal less than 20) in April. Numbers have increased although still low positive range. My question would that although false positives are possible is it likely that you would 2 false positives 4 weeks apart with increasing numbers. We have an appointment with a Gi on Monday but I get the feeling that diagnosis can be hard to achieve and I want to be as prepared as I can be knowing that they have dismissed his low positive results before. Thsnks so much for any input.
  12. Hi everyone, just wanting your opinion on whether you think my 9 yr old son could be coeliac. He started vomiting about 5 weeks ago and complaining of a sore tummy. First doctor said constipation and told him to drink some water. 2nd doctor ordered bloods and coeliac screen. Results CLINICAL NOTES: IMMUNOLOGY SPECIMEN: SERUM COELIAC DISEASE ANTIBODIES REFERENCE RANGES Normal Low Mod. Strong Deamidated Gliadin IgG * 24 CU (< 20) (20-50) (51-80) (> 80) Tissue Transglutaminase IgA * 24 CU (< 20) (20-50) (51-80) (> 80) INTERPRETATION Low level of tissue transglutaminase antibodies of uncertain clinical significance. RECOMMENDATIONS If clinical suspicion remains high, tests on a fresh blood sample for HLA DQ2/DQ8 are recommended. Negative DQ2/DQ8 virtually excludes coeliac disease. If DQ2/DQ8 positive, small bowel biopsy may be required. They are calling this low positive. We had tested genes and while waiting for results my son got very sick and was admitted to hospital for an inflamed large bowel which they then attributed to him having clampobacyter. They then said all his symptoms and possibly the coeliac screen results were because of this bug even though his symptoms started 3 1/2 weeks before he got sick with the bug. They sent us home and and said he'd get better. 2 days later I drove him to our closest city to another hospital as he couldn't stop throwing up and they admitted him again. They finally agreed after discussions with 3 c different departments and infectious diseases that the bug was not the cause of his existing symptoms but are still reluctant to look at coeliac even though his gene test came back positive for 2 genes. They have tentatively diagnosed him with gastro paresis as he is vomiting up to 11 times a day. He is pale, has dark circles under his eyes and complains of constant tummy pain that increases at times during g the day. I guess I'm just wondering if he fits the profile for coeliac or at this point in just hoping it is so I know what's wrong and can do something g to fix it instead of just watch him get sicker. Thanks so much for any response. xx