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- trents replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Options - 7 year old boy - Helicobacter pylori and serology
Kathleen, I am not sure I agree with you that your son is asymptomatic with regard to his celiac disease. The horrible stomach pains you describe in your first post could be celiac symptoms as easily as they could be H. Pylori or viral infection symptoms. Yes, the social impact of having celiac disease is perhaps the most difficult dimension of the disorder... -
- trents replied to StaciField's topic in Related Issues & Disorders7
My bone structure is disintegrating and I’m having to have my teeth removed
Staci, take note of the forms of magnesium and zinc I recommended. With some of the vitamins and minerals, the formulation can be very important in how well they are absorbed. Many of the vitamin and mineral products on supermarket shelves are in a form that maximizes shelf life rather than bioavailability which, in your case, would seem to be a critical... -
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- Kathleen JJ replied to Kathleen JJ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Options - 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 & Disorders7My 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.
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0December 11, 2024 12:00 AM
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Kathleen, I am not sure I agree with you that your son is asymptomatic with regard to his celiac disease. The horrible stomach pains you describe in your first post could be celiac symptoms as easily as they could be H. Pylori or viral infection symptoms. Yes, the social impact of having celiac disease is perhaps the most difficult dimension of the disorder to deal with. It requires thinking ahead and providing safe substitutes for snacks and party foods so that your son doesn't feel left out and singled out or different. Some of those feeling are unavoidable but they can be minimized. Dining at eateries is a huge challenge to celiacs as even when you order gluten free menu items they are often heavily cross contaminated back in the kitchen from being cooked together with wheat things or handled with the same utensils. You need to be bold in asking a lot of questions and requesting that your son's food be cooked in separate pots and pans. It's awkward at first but you get used to it. Speaking of CC (Cross Contamination), how careful you have to be with this will depend on the sensitivity level to gluten your son will demonstrate. This can be a challenge to get a handle on for those celiacs who are of the "silent" type. By "silent" is meant they are largely asymptomatic. It is common for sensitivity levels to increase over time when gluten is withdrawn from the diet as whatever tolerance we may have had to gluten when we were being exposed to it constantly may disappear. Whether or not that proves to be the case, it would be important for you to have his antibody levels checked at regular intervals (say every six months to a year) to check for compliance with the gluten free diet. And I would not worry about him touching wheat food products. It is highly unlikely that any significant exposure will occur transdermally. That would only be an issue for the most extremely sensitive subset of celiacs. Of course, you wouldn't want him getting wheat flour on his hands and then putting fingers in his mouth. At school, you will need to pack his lunches and also have conversations with the school dietary staff to ensure his safety. I know this all seems overwhelming right now but you are not the only parents who are having to go through this kind of thing. Celiac disease is not uncommon and thankfully there is much more public awareness about it than there was a generation ago. It can be done. It's the kind of thing that requires parents to be willing to find that extra gear of assertiveness in order to keep their child safe and to guard his/her psyche as much as possible. Count your blessings. It could be worse. He doesn't have cancer. This might be helpful in getting off to a good start with eating gluten free. Some of it may be overkill depending on how sensitive to minute levels of gluten your son is: -
Staci, take note of the forms of magnesium and zinc I recommended. With some of the vitamins and minerals, the formulation can be very important in how well they are absorbed. Many of the vitamin and mineral products on supermarket shelves are in a form that maximizes shelf life rather than bioavailability which, in your case, would seem to be a critical issue. And with magnesium, if you use the typical over the counter form (magnesium oxide) you may find it has a definite laxative effect (think, "milk of magnesia") simply because it isn't well absorbed and draws water into the colon. Spend some extra money and get quality vitamin and mineral products and research the issue of bioavailability. There are forum members who are knowledgeable in this area who may have recommendations. Do you have Costco stores where you live? Is Amazon available to you?
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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...
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