newly diagnosed, dealing with pain

[ollieotters]

hello!! i’m 16, and i was just diagnosed about a week ago, even though i’ve cut out all gluten from my diet i’m still in severe pain everytime i eat, does anyone know how to stop this:( i also still immediately throw up sometimes, is it just gonna take a bit for the gluten to get out of me ? also if u guys have any advice that would be rlly nice :,) 

thank you :,) 

[cristiana]

Hi Ollie

Welcome to the forum!

I am sorry to hear that you are still in severe pain when you eat.   

Firstly, it can take a while for the gut to start to heal and for some of us celiacs there aren't always instant results on giving up gluten.   One of the things that can slow the healing process down is by still having small traces of gluten in our diet.   It can take a while to gluten-proof your diet.   You will need to use your own toaster, for example, and make sure that no gluten is sneaking into your food if you are sharing a house with other gluten eaters.   If you are taking any medication, you will need to make sure it doesn't contain any gluten, etc, etc.

Another thing to watch is that often celiacs are temporarily lactose intolerant until the gut heals and so you may find it will help you to cut down things like milk and yoghurt for a little while, although you may still be able to tolerate small amounts and other dairy products like hard cheese which is low in lactose.

I'm in the UK and here the doctors recommend taking oats out of the diet for the first six months and then reintroducing them.  I used to love eating oats but had to give them up as they worsened my stomach pain when I was first diagnosed.   Then, when you do go back to them, you need to be eating only "pure oats" which are processed separately to gluten containing grains like wheat and barley. I remember when I was first diagnosed another problem I had was lentils and peas hurt to eat.  I can eat them now, but when your stomach is still very sore you may be best eating simple food like well cooked chicken, potato, carrots, bananas, toast etc.

Have you got anyone in the family who is also a celiac who might be able to give some guidance and support?  Or any friends?

Anyway, I do hope some of the above has helped but there's much more information in this link.  

Do come back to us if you have any questions, there are lots of people here who can help!

Cristiana

 

 

[ollieotters]

hi !:) thank you so much, 

i’ll definitely keep all of that in mind, i also really enjoy oats :]
 

im the first one in my family to be diagnosed and none of my friends have it either, it’s started off a little rough because while i was waiting for the blood tests to come back my mom told me i was being dramatic haha, once she found out she apologized so that parts going well, i’m gonna tell my therapist abt it to help me learn to cope with it, again, thank you so much i really appreciate it:)

[cristiana]

You are more than welcome, Ollie.  Well done for adopting the gluten free diet already!  Might be worth sharing the 101 facts with your close family and friends so they can better support you in this.  Also, I was told when I was diagnosed to speak to my parents and sibling about being tested too - my parents declined, but my sister, and subsequently my children have been tested.  All clear - but it's worth doing, as often close relatives can have celiac disease too.

Take care

Cristiana

 

[Scott Adams]

Hi Ollie, welcome to the forum! I agree with everything @cristiana shared with you here. As she mentioned, there is a 44% chance that some of your first degree relatives may also have celiac disease, so be sure to let them know that they really should get a blood test for it as well, and many celiacs don't have symptoms.

You may also want to get screened for vitamin & mineral deficiencies, as they are very common, and can cause a variety of symptoms. It's likely you'll need to take vitamin & mineral supplements.

[ollieotters]

thank you so much:)

[Tee L]

Hi Ollie,

If you like to cook there is a gal online, Gluten-free on a Shoestring.  Her teenage boy has it. Her recipes are always perfect.  She’s a perfectionist.

 

 

[cristiana]

Hi, I have recently been diagnosed with celiac after getting a private wellman check as I have been feeling very tired lately, no energy and noticed twitches/tics all round my body, mostly in my left calf and some in my right.

I was and still am extremely worried this may be a more serious illness and spoke to my doctor who prescribed me with sertraline as I suffer with depression and anxiety, but this was before I got my positive Celiac results back.

I am due to call my gp today and get her advice, do many other people get twitches in calves and seem to me mostly of a morning first thing and last thing at night, as I am worried sick it could be a more serious illness.

thanks  

 

 

Hi Adam and welcome to the forum

You may wish to start up a new thread on this, but yes, the symptoms in your calves you describe are common.  It can be caused by nutritional deficiencies.  Have you had any tests for vitamin deficiencies (such as B12 and vitamin D tests often offered to newly diagnosed celiacs) and also iron (ferritin)?   

I had the calf twitches you described.  Also twitching and pins and needles in my face and my hands and my arms were numb when I woke up in the morning,  All of this gradually eased when I got the hang of the gluten free diet, took the supplements I needed, and only comes back when I am glutened.   My GP didn't test for magnesium deficiencies but I found supplementing this helped tremendously too.

It is also common to suffer from depression or anxiety building up to the diagnosis.  I did myself.   Having these symptoms can be anxiety creating in themselves, but I found it really helpful to tell myself that it was most likely celiac disease that was causing the problem (there are a lot of people on this forum who have had these sort of symptoms if you search for them), and to try to distract myself with other things while I waited for an improvement.  I found it especially helpful to try to be with other people, and to run errands for elderly neighbours etc,  just to get my mind off these things.  The symptoms were "still there" but it helped not to make them my main focus.

Take a look at the link below for some really good tips.  I am not sure where you are posting from but if you are from the UK, like me, you will find it useful to join Coeliac UK at least for the first year following diagnosis.  They have some really useful information, a food and drink directory and also an app you can put on your phone that will help you shop for gluten-free food at the supermarket.

So, in a nutshell, you are not alone - a lot of us can say we've been there too, and things did get better!  I hope this helps.

Cristiana

 

 

Edited June 29, 2021 by cristiana