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

newly diagnosed, dealing with pain


ollieotters

Recommended Posts

ollieotters Apprentice

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 :,) 


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



Celiac.com Sponsor (A8-M):



cristiana Veteran

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 Apprentice

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 Veteran

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 Grand Master

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 Apprentice

thank you so much:)

Tee L Newbie

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.

 

 


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



Celiac.com Sponsor (A8-M):



cristiana Veteran
(edited)

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 by cristiana
  • Scott Adams changed the title to newly diagnosed, dealing with pain

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,560
    • Most Online (within 30 mins)
      7,748

    Noel P
    Newest Member
    Noel P
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • badastronaut
      Thanks very much for the in depth reply!!! I'll discuss it with my doctor next week!
    • knitty kitty
      Hello, @badastronaut, I reread your last post on your previous thread... "Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks.  "Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore).  "What to do??? Could this be gluten related?"   Your bilirubin is high.  The liver breaks down bilirubin.  The liver needs Thiamine to break down bilirubin.  Without sufficient Thiamine, bilirubin is not broken down and escapes into the bloodstream. High levels of bilirubin suppress the immune system.  High levels of bilirubin suppress the production of white blood cells, including anti-gluten antibodies.  The suppression of your immune system by high bilirubin could be the explanation for false negative Celiac antibody testing.  Thiamine is needed for antibody production.  Thiamine deficiency can cause false negatives on Celiac antibody tests.  If you are not making a lot of antibodies, you won't have much damage to the small intestine.   Your ALT is high.  The liver produces ALT.  When the liver does not have sufficient Thiamine, the liver produces more ALT that escapes into the bloodstream.  Elevated ALT is seen in thiamine deficiency. Your Lipase is high.  Lipase is produced in the liver and pancreas.  More Lipase is released by both in thiamine deficiency. Your gallbladder has been removed.  Gallbladder dysfunction is common in thiamine deficiency. Your Zinc is low.  Zinc absorption is enhanced when Thiamine is present.  Zinc is not absorbed well in thiamine deficiency. Your Folate is low.  Celiac Disease causes malabsorption of all the essential nutrients we need for health, the eight B vitamins, including Thiamine, the four fat soluble vitamin, Vitamin C and minerals like Zinc and Magnesium.  Thiamine stores can be depleted in as little as three weeks or even as quickly as three days.  Thiamine deficiency symptoms can wax and wane depending on how much thiamine is consumed that day.   If a high carbohydrate is eaten regularly, additional Thiamine is needed (500 mg per 1000 calories). Anxiety and depression are symptoms of thiamine insufficiency.  The brain just thinking  uses as much thiamine as muscles do when running a marathon.   I have had thiamine deficiency symptoms like you are experiencing.  My doctors did not recognize the symptoms of thiamine deficiency.  They just prescribed pharmaceuticals to cover up the symptoms which only made things worse.  I had a lot of nutritional deficiencies.  I ended up getting a DNA test to check for known genes for Celiac.  I have two Celiac genes.   Have you had a DNA test for Celiac genes?   I took Benfotiamine, a form of thiamine that promotes intestinal healing, and a B Complex to correct my deficiencies.   High doses of thiamine need to be taken to correct deficiency.  Talk to your doctor about administering thiamine intravenously.  Thiamine is safe and nontoxic even in high doses.  Thiamine is easily excreted in urine if not needed.  Improvement of symptoms should be seen within a few hours to a few days.  No harm in trying.  Process of elimination, etc.   Talk to your doctor and nutritionist.  Testing for nutritional deficiencies should be done before taking vitamin supplements, otherwise the vitamin supplements already taken will be measured.   I hope this helps you on your journey. References: https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6662249/#:~:text=CONCLUSION%3A,in men than in women. https://pubmed.ncbi.nlm.nih.gov/24923275/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6040496/ https://pmc.ncbi.nlm.nih.gov/articles/PMC3772304/#:~:text=Based on the patient's history,were also no longer present. https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].  
    • James47
      Hey everyone I hope all are well and having a good 2025 so far. I am 50 this year and I only got diagnosed with celiac in June 2023. I have followed my diet to the letter since and they said after so many years undiagnosed it would take a long time to recover. Although I feel I have lot more energy and health and wellbeing is a lot better I still have severe gluten belly even though I work out daily and have a physical job. Any advice or info of anything else I can do would be greatly appreciated 👍 👍 
    • trents
      Welcome to the forum, @TexasCeliacNewbie! The test results you posted strongly point to celiac disease. It is likely that your physician will want to perform an endoscopy with biopsy of the small bowel lining to confirm the results of the celiac antibody bloodwork results you just posted. It is important that you not cut back on gluten consumption until the endoscopy/biopsy is complete, assuming, that is, one is forthcoming.  Can you post the actual reference ranges used by the lab for the tests to determine positive/negative/normal/high/low? Scales used by these labs are different from one place to the other so the raw numbers don't mean much without the scale used by the lab. There aren't industry standards for this. By the way, you probably won't be able to edit the original post so please post the extra info in new post. May we ask about the cancer you mentioned? There are some things that can elevate the antibody test scores, at least mildly, besides celiac disease.
    • TexasCeliacNewbie
      Hi, I have been having a lot of back pain and gut issues for 8 weeks or so.  I saw the GI on Monday and my results just came in from the lab.  Some of these number are high and off the little chart from the lab.  I am reading this correctly that I most likely have Celiac, right???  It would explain a lot of things for me that otherwise are worrying me that my previous cancer is recurring.  Thank you for all of your expertise in this area! Immunoglobulin A, Qn, Serum 140 (normal) Deamidated Gliadin Abs, IgA 256 (High) Deamidated Gliadin Abs, IgG 65 (High) t-Transglutaminase (tTG) IgA 31 (High) t-Transglutaminase (tTG) IgG 10 (High)
×
×
  • Create New...