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Janwill

15 year old gluten free 4 months

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My son was diagnosed celiac in June this year and been on gluten free since then. 

His symptoms are worse pain in chest lack of sleep daily pain and frequet visit to the toilet. Diahorria sickness and is white as a sheet. 

We in the UK and he in his last year of high school and missed 2 months already due to his celiac. 

He getting no work from school and thinks he failed his last year. I have meeting with school soon as they think it's anxiety and not celiac. 

Just wants some advice how long should it taken to get better as the Dr refused to do retest to see if levels are going down and it's a waiting game they said. 

Not very helpful for a 15 year old who thinks his life ended and thinks he never be well. 

 

Any advice be great 

Thanks 

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The anxiety and stress part of it can take years to go away. Supplementing with B-vitamins, magnesium, and eating foods that promote serotonin production and healthy fats like pumpkin seeds. cocoa nibs can help. I would suggest Liquid health Stress & Energy and Neurological support for b-vitamins due to the presence of D I would suggest a magnesium glycinate for a magnesium. All of these are deficiencies normally caused by the damaged intestines from celiac.
I do have a concern presence of D still after being gluten-free can mean several things. Is he 100% gluten free? Is the house gluten free or could he be getting contamination from some source in the house? Gluten can be difficult to avoid I might suggest keeping a food diary and keeping track of what he eats, and how it is fixed (seasonings, sauces, etc).
Few other ideas. dairy, many celiacs develop dairy intolerance due to the damaged villi not being able to help produce/use the enzymes to break down lactose.
Oats, 10% of celiacs react to oats in a similar fashion to gluten and can not tolerate them.
If all else fails try a low carb/ketogenic diet, this type of extreme diet works wonders for some. for me my mentality is soooo much better on this diet. Other people can have other issues and food intolerance from histamines, to letcin intolerance to just about any food, hince the importance of a food diary.

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2 hours ago, Janwill said:

Thank you I have started a food diary and keep his food separate and cook his food in air fryer and his food only. Have limited his milk but hoping once we seen dietician can shed some light why he still ill. 

My mental images and assumptions here of worst case have me confused.  Do you only cook him fried food? Anyway a varied diet is also important with this disease, and plenty of leafy greens nuts ,seed, meats, eggs, etc. Cooked well and soft normally makes digestion easier. Stews, soups, nut flour/butter porridge, omelettes, salads, quiche, and stir fries are some of my staples. I assume you have read the newbiew 101 section about contamination and common areas of concern. I will link it regardless, Few things I swear by for people, butcher paper for a clean prep surface and eating area, and microwave cook ware to start with, You can buy nordic ware cook ware for the microwave like grill plates, steamers, rice cookers, omelette makers etc. This is much cheaper then buying dedicated appliances/pots/pans starting off.  And makes cooking quick and easy for kids etc. (nothing simpler then whisking up eggs (in a dedicated gluten-free measuring cup with a dedicated whisk) and pouring in a omelette maker and adding in your veggies meats, seasonings)

 

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

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4 hours ago, Janwill said:

My son was diagnosed celiac in June this year and been on gluten free since then. 

His symptoms are worse pain in chest lack of sleep daily pain and frequet visit to the toilet. Diahorria sickness and is white as a sheet. 

We in the UK and he in his last year of high school and missed 2 months already due to his celiac. 

He getting no work from school and thinks he failed his last year. I have meeting with school soon as they think it's anxiety and not celiac. 

Just wants some advice how long should it taken to get better as the Dr refused to do retest to see if levels are going down and it's a waiting game they said. 

Not very helpful for a 15 year old who thinks his life ended and thinks he never be well. 

 

Any advice be great 

Thanks 

Hi Jan and welcome :)

First, have you joined Coeliac UK? Do consider it. Your son will qualify for reduced membership. They will send a book with safe supermarket foods listed, the none gluten free branded ones will save you a fortune.  They will also put you in touch with Coeliacs in your area that can offer help and support. There's a page he may find useful on their site: https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/advice-for-children-and-young-people/teenagers-and-young-adults/

Second. 4 months in is still relatively early days so there's every chance greater improvement will happen. I used to get horrible chest pains and I do occasionally get a twinge now and then, but that lets me know I'm not taking enough care with my diet. However, do not discount the chance that gluten is somehow sneaking in somewhere. There's a newbie thread here with some advice. https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/  On dairy, he may have lactose intolerance which may pass as he heals. Or he may have casein intolerance as I do, which isn't going away. Food diary will help.  Keeping off it for first few months may also. Don't forget a good multivitamin too. 

Third. Write a letter to his school. Give some details about where and when he was diagnosed as coeliac. Include a link to Coeliac UK. Mention this is a serious medical condition which affects your sons ability to sleep, concentrate etc.  Ask them to arrange a meeting so you can discuss your son's special needs due to this illness and that in advance of this meeting you'd appreciate any information on the school's policies towards children with special needs or any help which may be available. Mention that his exams are coming up, he may be able to get extra time to complete them or extended deadlines for coursework etc. 

Be polite, but don't be fobbed off. By anyone, schools, doctors etc. :)

And last, to your son - you're going to get better, you're going to feel better than you ever thought possible. The diet will be tough, but not as tough as going through life with this condition undiagnosed or on gluten. It will get better, you'll get better at it, more experienced. There's lots of good foods you can eat and gradually you'll focus on those rather than the things you can't have. Every day is going to be a bit better until one day you won't even think about it and you'll be getting on with your life same as everyone. 

Best of luck to you both!

Matt

 

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