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- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Options - 7 year old boy - Helicobacter pylori and serology
And yes, of course it's better to know and we will adjust. It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made. I'm really burdened by the potential social impact... -
- StaciField replied to StaciField's topic in Related Issues & Disorders6My bone structure is disintegrating and I’m having to have my teeth removed
I’m 41. You have helped me achieve the goals of finding a way of getting nutrients into my body so I will see how it works for me. Thank you so much. -
- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3
Options - 7 year old boy - Helicobacter pylori and serology
Thank you for your reaction. The reference values are both "<10", although I found a medical paper from Netherlands (I'm Belgian) who use the same values and there the see a positive daignosis as twice more then 200 and a positive biopsie. I didn't see how to change this in my original message, sorry... -
- cristiana replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Options - 7 year old boy - Helicobacter pylori and serology
Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear. I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter...
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0December 11, 2024 12:00 AM
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Posts
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By Kathleen JJ · Posted
And yes, of course it's better to know and we will adjust. It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made. I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up? And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be? For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞 -
By StaciField · Posted
I’m 41. You have helped me achieve the goals of finding a way of getting nutrients into my body so I will see how it works for me. Thank you so much. -
By Kathleen JJ · Posted
Thank you for your reaction. The reference values are both "<10", although I found a medical paper from Netherlands (I'm Belgian) who use the same values and there the see a positive daignosis as twice more then 200 and a positive biopsie. I didn't see how to change this in my original message, sorry... -
Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear. I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter pylori on this forum. I am not sure how that would reflect in the blood results so I will leave this to be answered by my more experienced colleagues @trents or @Scott Adams. Obviously, you won't really know for sure where things stand until you have your meeting with the consultant. I am sorry that you have to wait, but it will be worth knowing one way or another. Apart from his recent gastric issues, it is fantastic to know that your son is otherwise a picture of health. But it is worth bearing in mind that undiagnosed coeliac disease can cause health issues in the longer term, so far better to know now if he does turn out to have coeliac disease and adapt your son's diet accordingly, before other health issues have a chance to appear. Cristiana
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By Kathleen JJ · Posted
Hi all, I'm very new at this and 'this' has been quite a rollercoaster ride. Last august my 7 year old son suddenly had these colic like pain attacks that would come a few times per day/night during 10 days. Because they were that bad and because our older daughter had her appendix taken out at 7, we ended up at ER twice to have him checked out. On both accounts blood was taken, on one account an ultrasound was made, showing swollen lymph nodes around the stomach, and the working theory was it was a violent reaction to a viral infection (even though he was not nauseous nor had diarrhea or anything like that). After 10 days it stopped as suddenly as it came on. On October 1d my daughter started vomiting in the middle of the night, had a fever, and my son also threw up once (no fever). We kept them home from school, daughter kept on vomiting, fever stayed, son was perfectly healthy during the day, although he only ate yoghurt to be safe. The plan was to let him go to school the day after. In the night prior to his school return however, he woke up at 1, screaming with pain, begging to go to ER, which we did - the pain from august had returned. Again bloodwork, but nothing found. It ended up only being that one pain attack, but because they were that bad, we went to the pediatrician the week after to have him checked up more thoroughly. He is a very energetic, sporty boy and he showed off his six pack with great pride to the doctor. She said he looked as an example of health, but did a more extended search because as the last blood test his liver values had been ever so slightly raised and she wanted to see how they'd do after a month. So on November 8 we had his blood drawn again. His liver values had returned to normal, which did confirm the working theory that his pains were viral-infection triggered. However, to everyone's (including the doctor) surprise, he also had these values: Transglutaminase IgA + >128 U/mL Gliadine IgG + 123.0 U/mL I take it these are quite high. So last Tuesday he got his gastroscopy done, we'll have the result around the 25d we hope. Whilst going for taking samples of the bowel, the gastro enterologist did notice some nodes in his stomach that present like a reaction to a Helicobacter pylori type infection, which would very much explain the type of pains he had. We are still very much in shock by the Ceoliakie diagnosis (I know, it still needs to be confirmed by the biopsy, but with those numbers we kind of expect it) as he has no symptoms at all. The doctor said 'once he goes on a gluten free diet you'll see him blossom into an energetic, more happy boy' and we're like: but he is bouncing around singing and joking all day, I really can't imagine him being MORE energetic and happy - meaning, he's welcome to be that of course, but this is not a tired, withdrawn kid. And even if the biopsy gets back negative (unlikely), what could these numbers have meant then? Could the Helicobacter pylori have an influence on this? I have so many questions but are only eligible for a consult on December 6d so my data driven mind is going crazy having so little information or knowing so little about what everything means... Kind regards, Kathleen
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