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Hi! I was officially diagnosed a couple of months ago now but I have been gluten free for about 4 months since my endoscopy. However, in the last month I have noticed some worrying post diagnosis and treatment symptoms. My appetite has shrunk enormously. I used to be able to eat bowls and bowls of food and still be hungry, I could consume food even when full and I was constantly snacking. I understand over eating is a big part of celiac disease before going on a gluten free diet but food is such a huge part of my lifestyle. This last month I feel as though I have lost myself a bit as huge parts of my character like my love for food, huge appetite and my non fussy nature have all been turned upside down. I could easily not eat any snacks in a day now and not have to have all my meals. I thought I might have lost weight so I weighed myself on the same scales I did a couple of months ago. I am a young tall girl and was 10 stone for the last year at least. In the last few weeks I have lost half a stone which is 7 pounds and am now 9.5 stone. This is not intentional and I did not aim or want this to happen so I am concerned about any continued lack of appetite and weight loss in relation to my health. Therefore, I am going to weigh myself each week and make sure I am eating all three meals. If it continues I'll visit the doctor. Also, I am noticing fatigue still which was a huge part of my pre diagnosis symptoms. I get to a certain point in the afternoon where I feel like I need to go home and rest because I can no longer continue. I have no stamina and it is restricting my freedom, which I feel has already been taken from me as a result of this diagnosis that came at a frustrating point in my life which was a huge nuisance. Finally, I am also finding it a bit of a struggle to get my head around the whole thing still and to understand what it means for me and my life. I am very worried and scared that it will impact me not just physically but mentally and socially and it scares me. I guess this was more me getting all this off my chest and into the open, if anyone has any advice or feedback I will be hugely grateful.

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You might be like me and need to get a vitamin and mineral panel blood test.  And make sure it includes iron.   We both might be deficient in certain vitamins/minerals.  My medicals bills have been so high I've put it off and just started taking a multivitamin instead.  But I'm not sure it has it in what I really might be deficient.   So I'm going to spend more money and get a vitamin and mineral panel blood test.

Even at my age I have high metabolism.   Gluten free meals only fill me up for 2-3 hours so I have a backpack with me everday and have gluten free snacks to hold me over.   My weight went from 168 to 161 my first month gluten free.  But it seems to have stabilized and might be going back up again a little.  I'm in the start of my 3rd mo. being/trying to be gluten free.   If I am hungry for too long I kinda get light headed and dizzy so I bring gluten-free snakes with me.

I drank a bottle of Ensure + my first month to help keep weight on but it didn't seems to agree with my stomach.   It might of been my body trying to adjust to the new gluten free diet that caused that issue.  

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47 minutes ago, sddave said:

You might be like me and need to get a vitamin and mineral panel blood test.  And make sure it includes iron.   We both might be deficient in certain vitamins/minerals.  My medicals bills have been so high I've put it off and just started taking a multivitamin instead.  But I'm not sure it has it in what I really might be deficient.   So I'm going to spend more money and get a vitamin and mineral panel blood test.

Even at my age I have high metabolism.   Gluten free meals only fill me up for 2-3 hours so I have a backpack with me everday and have gluten free snacks to hold me over.   My weight went from 168 to 161 my first month gluten free.  But it seems to have stabilized and might be going back up again a little.  I'm in the start of my 3rd mo. being/trying to be gluten free.   If I am hungry for too long I kinda get light headed and dizzy so I bring gluten-free snakes with me.

I drank a bottle of Ensure + my first month to help keep weight on but it didn't seems to agree with my stomach.   It might of been my body trying to adjust to the new gluten free diet that caused that issue.  

Thanks for replying! I actually got a blood test for everything and it all came back normal. However, I was slightly anaemic which my doctor said should go back to normal in a few months. I guess I'll go back and get another or speak to the doctor if I am unsure. When I first went gluten free I was still very hungry and my gluten free food also didn't fill me up. I got the same dizzy spells and had to have snacks with me! However, now on the 4th month its gone the complete other way. Anyway, thank you for your feedback and help.

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Hi and welcome :)

4 hours ago, Natasha927 said:

Also, I am noticing fatigue still which was a huge part of my pre diagnosis symptoms. I get to a certain point in the afternoon where I feel like I need to go home and rest because I can no longer continue. I have no stamina and it is restricting my freedom,

Can you tell us a little about your diet? What are you eating on a typical day? You may find that some simple switches in food choices can deliver more energy and fewer spikes and crashes.

4 hours ago, Natasha927 said:

Finally, I am also finding it a bit of a struggle to get my head around the whole thing still and to understand what it means for me and my life. I am very worried and scared that it will impact me not just physically but mentally and socially and it scares me.

This is something that receives too little attention, particularly from the medical community. It can come as a huge shock to the system and as the implications become apparent its easy to feel overwhelmed. This certainly happened to me and many others here so first do know that you're not alone. You are currently grieving believe it or not and you will be going through the stages of grief.  Second, although it may not feel it now, it WILL get better and you will adjust and adapt as you get used to the diet and start focusing on what you can still do rather than what you can't. 

In the meantime, this is a good place to vent and share those feelings as they are perfectly natural and understandable and whilst not always helpful,  they are a part of you and a part of the healing process. Go easy on yourself, this is very early days. You are young, which is good news, it means you will heal sooner and you will adapt quicker and there's lots of good things on the way for you as your body gets a rest from the gluten that's been holding you back. 

All the best!

Matt

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While you could very well be vitamin/mineral deficient, you could also have issues with your thyroid.  Autoimmune thyroid is common with .......autoimmune celiac disease.  Your doctor should order a full thyroid panel, including thyroid antibodies.   Your blood sugar should also be checked (autoimmune diabetes).  I am not saying you have these issues, but these AI issues are common with celiac disease.  In fact, you can develop or have more than one AI issue.  

If I feel a very strong need to nap, I know my thyroid is off and my doctor should be notified.  A simple blood test usually verifies that an adjustment to my thyroid replacement is needed.  

That said, you are in the healing stages of celiac disease.   Eat healthy and include plenty of fats to keep you satiated.  Try to avoid processed foods.  Make sure that gluten-free diet is varied and full of veggies.  Get plenty of rest.  Just listen to your body.  Soon you will feel much better.  

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10 hours ago, Jmg said:

Hi and welcome :)

Can you tell us a little about your diet? What are you eating on a typical day? You may find that some simple switches in food choices can deliver more energy and fewer spikes and crashes.

This is something that receives too little attention, particularly from the medical community. It can come as a huge shock to the system and as the implications become apparent its easy to feel overwhelmed. This certainly happened to me and many others here so first do know that you're not alone. You are currently grieving believe it or not and you will be going through the stages of grief.  Second, although it may not feel it now, it WILL get better and you will adjust and adapt as you get used to the diet and start focusing on what you can still do rather than what you can't. 

In the meantime, this is a good place to vent and share those feelings as they are perfectly natural and understandable and whilst not always helpful,  they are a part of you and a part of the healing process. Go easy on yourself, this is very early days. You are young, which is good news, it means you will heal sooner and you will adapt quicker and there's lots of good things on the way for you as your body gets a rest from the gluten that's been holding you back. 

All the best!

Matt

Thank you so much for your reply, it has really helped! Your feedback on the grieving side has really comforted me to know I am not the only one and that it will get better. I am not always upset and sometimes I feel optimistic but occasionally it really just does get overwhelming especially at the moment if I am eating in a restaurant for the first few times or out with friends and have to be concerned with what I can eat and not just concerned with having fun.  In relation to my diet I have seen a dietitian and got very positive feedback. I love cooking so this has been helpful with changing diet. But, I just find that I run out of recipes and am sometimes eating the same thing on repeat which is agitating. Unfortunately, I currently cannot eat lots of fruit as my stomach responds poorly to it so my dietitian has said to eat only one or two servings a day and build up. I definitely am going to research more recipes and snacks over the next month and really try to get my diet sorted so I can feel more relaxed and better. Thank you again your response it has helped massively just to know there are people out there who understand! Thank you.

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10 hours ago, cyclinglady said:

While you could very well be vitamin/mineral deficient, you could also have issues with your thyroid.  Autoimmune thyroid is common with .......autoimmune celiac disease.  Your doctor should order a full thyroid panel, including thyroid antibodies.   Your blood sugar should also be checked (autoimmune diabetes).  I am not saying you have these issues, but these AI issues are common with celiac disease.  In fact, you can develop or have more than one AI issue.  

If I feel a very strong need to nap, I know my thyroid is off and my doctor should be notified.  A simple blood test usually verifies that an adjustment to my thyroid replacement is needed.  

That said, you are in the healing stages of celiac disease.   Eat healthy and include plenty of fats to keep you satiated.  Try to avoid processed foods.  Make sure that gluten-free diet is varied and full of veggies.  Get plenty of rest.  Just listen to your body.  Soon you will feel much better.  

Thank you for your response! Again I am pretty sure my doctor did all these checks however I will definitely check to make sure and take the necessary actions if not. It just feels like a never ending run of doctor appointments and blood tests at the moment and the whole thing really did come as a surprise to me. I think I have really tried to eat healthy as I believe its so important especially being diagnosed with this disease. I feel as though its not just about eliminating gluten but also having a really healthy and balanced lifestyle. Also, I find that at the moment it is not just gluten that upsets my stomach, fruit for some reason also does. Unfortunately, people do not realize this and dismiss it which can also be annoying on top of the diagnosis. I will definitely be avoiding processed foods and have been for the last few months. Thank you for your response and I will listen to my body as you have said, it is without doubt very important.

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