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beebs last won the day on December 2 2011

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  1. So we put him gluten free after the negative bloods, we didn't want to push for a biopsy unless we had a bit more evidence. Belly pains stopped 100% . He has just gone back on gluten for a challenge and yep, belly pains are back with foul stools. I rang the coeliac society, and they said the new test they are working on that would only require 3 days of eating gluten could be 5 years away or more. I don't know if I can watch him in pain for 6 months (until he can get he biopsies done.)

  2. My daughter was diagnosed with "probable" Celiac when she was 15 months old.  She was too ill for the endoscopy with biopsy.  Her Celiac panel had some positives and the genetic test was positive for DQ2 and DQ8.


    When she was 6 everything got worse again, same type of Celiac symptoms.  She was very good about the gluten free diet, but just getting sicker.  Her "whole" belly hurt, and she was vomiting up to 5 times a day.  (sometimes it was a burp of vomit in her mouth)  She went on to be diagnosed with Eosinophilic Esophagitis which is now being diagnosed more with Celiac.


    (If the doctor does not order the test, the pathologist does not put the red dye on to the sample~ and the presence of the eosinphils is not detected.  Some damage should be seen in the esophagus such as furrowing, schatzi rings (spelling?), and creamy blotches, and other such damage.


    I have EoE as well! Stupid disease, it really is horrid!

  3. Can't speak for any children except myself--


    As a baby I would spit up a lot.  As a young child, this turned into throwing up more than was probably normal (I couldn't burp without throwing up until I was 6).


    In elementary school I often had a stomachache after eating lunch.  I didn't eat breakfast before school because I never felt well when I ate breakfast either.  


    Starting around middle school, I would get diarrhea after eating almost anything.  In high school it got worse.  In college I was diagnosed with ulcerative colitis.


    I was 26 when I found out I couldn't have gluten.  There were a million signs before that, but it was never on anyone's radar.  (Except a friend who suggested it back when I was about 20 and suffering from some weird nutritional deficiencies that we blamed on the colitis.)  And don't even get me started on how my parents just ignored all my pains.  My mom worked in my school, and every day I would tell her I felt sick after lunch.  And every day she blamed it on recess, even when we had indoor recess.  Which doesn't even make sense.


    So my advice is ... don't be like my parents.  Monitor it, keep track of what he's eating, and keep track of what kinds of symptoms he's having after he eats that.  It could be another food issue.  It could be something worse like colitis or crohn's that hasn't really, uh ... blossomed yet.  And I say that not to scare you, but just based on my own experience.  So I'm glad that you're taking his complaints seriously, and I hope you figure out what's going on.  


    (By the way, I also have a family history of colitis and colon cancer on both sides, and I know what it's like when people don't think that's relevant.  Frustrating!)

    You're story sounds like mine, expect my mother took me to specialist for years and they all thought she was "over involved". But yeah, symptoms as a child, always feeling ill, always vomiting, chronic nose bleeds, ulcers etc. I was only after she as diagnosed at 65 that we started looking at me. Hindsight is amazing isn't it? 

  4. Yes, I started getting episodes of small bowel intussusception (which is a life threatening emergency) the last time I had it was after going gluten free for 6 weeks and then going out to dinner with friends to a Vietnamese and deciding I didn't want to be "one of those people", so I shared the same food as everyone else, and within 45 minutes I was projectile vomiting was in agonising pain and was rushed to hospital with intussusception again. I have never eaten gluten again (4 years) and never had intussusception since that night. 

  5. My 3.5 year old complains of stomach aches multiple times a day every day and it has been going on for months, he has had a negative coeliac panel, but is positive DQ2. 


    Just wondering if anyone else's child has had  just stomach ache and they turned out to be celiac? I have celiac, as does my mother, suspected in my (deceased - Bowel cancer at 45) grandfather and another one of my child is going for his second biopsy in a couple of weeks after the first one came back "borderline" at 18 months old. 


    Our GP doesn't seem particularly concerned even with our family history. 

  6. I am trying to get into a GI asap for testing of my little boy, who has had issues for years and years. He had a biopsy when he was 18 months which was borderline and not enough for a diagnosis because he had projectile vomitting, bad poos an severe reflux his whole life. Fast forward to now and he has been having chronic belly pains for the last 6 months. bad poos (his whole life) and low iron (his whole life). Belly pains are getting in the way of every day life and have been so severe I have taken him to ER over it He had coeliac bloods done a few months ago and they came back negative. Mine are also always negative, and I am coeliac so I don't trust them anyway. 


    I took him off gluten last week and an instant improvement. 

    I gave him gluten twice in the last week - once ended up bad belly pains and vomiting the other time ended up lying and writhing in pain for 7 hours with a "sore belly".


    I spoke to the coeliac society today - they told me to get him tested again - it is an 8-10 week wait just to see the paed GIs at the hospital. 


    How did you get through your child being so sick and in pain for that long? Can I give him anything to make him feel better? 


    I hate this - I hate having to watch him get ill for so long. I'm not sure if I can do it to be honest. 

  7. Thansk for your responses, and thanks nvsmom for the info on the marsh scores. Well, I think we are on the right track, the kids have only been gluten free for a week, went to a cafe today and we let DS have a burger, didn't even think about gluten to be honest. I forgot all about it. Within an hour he was white as a sheet and complaining of belly pains which led to vomiting. 


    It makes me so annoyed that they basically want your child to be eating gluten for months on a challenge, getting sick all the time to have a biopsy that may not come back positive anyway when it is clearly gluten. He gets sick from gluten and has done his whole life and no one will call it because his biopsy was marsh 2 and not marsh 3 gah! 

  8. He is one of the best GIs in the country, so I am reluctant to leave him.  But they redid his bloods recently before he was gluten free and they showed up negative again. Which really, my bloods have always shown up negative and I am deffo coeliac - so I don't really trust the bloods anyway. 


    What does Marsh 2 changes mean in terms of coeliac? Can it mean other things too is that why they can't diagnose unless it is 3 or 4?

  9. Yes. The biopsy came back positive for increase in intraepithelial lymphocytes.

    quote name="notme!" post="922124" timestamp="1404179706"]sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?

  10. Hi everyone, 


    I need to pick the brains of the people on here who know heaps about coeliac. 


    A bit of background information, I am coelaic and also have EOE, my mother is Coeliac and my grandfather developed bowel cancer in his 40s after a lifetime of sick bellies. 


    Two of my sons have been seeing a GI for almost their entire lives, one had a scope at 18 months and came back with Marsh 2 changes, Gastritis and ulcers in his esophagus - he had severe reflux and was in lots of pain for about two years of his life. At times lactose intolerant but other times not. 


    His stools have always been vile. 


    Anyway fast forward to now, he is almost 5 and started complaining of belly pains all the time, one time so bad he couldn't stand up and was screaming and I ended up taking him to ER. Every day, multiple times a day. 


    I started a gluten free trial with him (remember - we've been through multitudes of blood tests and an an Endo and still no diag). So far no belly pains and his stools have improved.


    So my question to you guys is this? Continue with the gluten free diet - or try and seek a proper diagnosis even though we've had no luck for 5 years?

  11. Oh my goodness, I just came on here to post something about this very thing. I have just been diagnosed with EE on friday. I was reading this study that is on this site about how it is more common among celiacs to have EE than the general population. The plot thickens. Anyone any good at data analysis?

    Standardized incidence ratio was 35.6 (95% CI, 9.3-79.0) for children, and 13.1 (95% CI, 6.2-22.5) for adults. Overall, age-adjusted and sex-adjusted standardized incidence ratio was 16.0 (95% CI, 8.7-25.5).

    The above is what the study found, any idea what it means?? Does that mean 35.6% of celiac children and 13.1% in adults? Or am I getting it all wrong?

    There is so clearly a connection between everything I have, it is starting to get me down though. Just another thing to add to the list!

  12. He has been eating gluten for two weeks, on the first day his reflux came back and since then he has a few bad bellies, saying it hurts and burny feeling etc. Yesterday he had an achy belly the whole day and then last night he vomited, he woke up in the night and vomited and then he vomited this morning. It could be gastro even, but he has no other symptoms other than an achy belly and vomiting. If it had started the day he ate gluten then I would think it was that, but now I'm not so sure.

  13. It is difficult without a solid diagnosis, my eldest son has been sneaking gluten at school - so we are about to do a gluten challenge with him. If he gets sick and I can see it is from Gluten then I will probably just stop the challenge and not bother with the diag, having said that, because our whole family is gluten free, our food bill is between twice and three times what a normal persons food bill is, I *hate* that!