Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

15 year old gluten free 4 months


Janwill

Recommended Posts

Janwill Rookie

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 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

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.

Janwill Rookie

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. 

Ennis-TX Grand Master
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/forums/topic/91878-newbie-info-101/

 

Jmg Mentor
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 Open Original Shared Link 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: Open Original Shared Link

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/forums/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

 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to dlaino's topic in Coping with Celiac Disease
      6

      Coping with celiac

    2. - trents replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increasing symptoms after going gluten free

    3. - Tyoung posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increasing symptoms after going gluten free

    4. - RMJ replied to cvernon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Global Food Gluten Free Certification

    5. - RMJ replied to Jsingh's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Contaminated cooking oils


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,998
    • Most Online (within 30 mins)
      7,748

    aplee76
    Newest Member
    aplee76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      mcg Vit. B12Hi dlaino  - You mentioned that you are now feeling sick all the time. If this is making you miserable you might want to go to your health provider, describe what you are feeling and your symptoms so that theySome of the people here can give you useful advice about taking supp;ements and the amounts you could take to improve your overall health. I have increased my Vit. B12  can help you figure out what is happening. Just because you have gluten intolerance does not mean that your current problems are related to that. Some of the people here can give you useful advice about supplements and how much to take for improved health. I recently upped my Vit. D3 from 50 mcg to 150 mcg and now take either 500 mcg or 1000 mcg of vit. B12 sublingual daily instead of once a week.                                    Take care
    • trents
      Welcome to the forum, @Tyoung! It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now. There are a couple of possibilities that come to mind. One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items. Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements. Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.
    • Tyoung
      Before my diagnosis I would consider myself pretty much asymptomatic other than a few flare ups of what I previously thought were ibs symptoms. After having iron deficiency as well I had a positive blood test and EGD. I have now been gluten free for about a month but my symptoms have gotten worse. I now have bloating, acid reflux, and pain in the upper abdomen on and off most days. I am pretty positive I am not being glutened as we overhauled our whole house to be gluten free and haven’t eaten out since the diagnosis. Has anyone else experienced a worsening of symptoms after going gluten free? Will it subside? Or is there something else I should be concerned about. Thank you! 
    • RMJ
      That is strange.  Other pages talk about testing. The one thing I like about GFCO is that the handbook for their certification process is available on their website.  I may not agree with the whole process, especially the reduced testing, but at least I can see what the process is. I wish the other certifying organizations would publish their processes. GFCO 2024 manual
    • RMJ
      GFCO does not require testing of each lot, so the “periodic laboratory analyses” fits their requirements. They say testing is done by certified bodies.  I’m not sure what that means for an Italian company. The GFCO requirement is less than 10 ppm.  Other gluten-free certifying companies may use other limits.
×
×
  • Create New...