Jump to content

  • 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

Undiagnosed celiac but have my blood test next week

TheSootyShow
 Share

Recommended Posts

TheSootyShow Apprentice
TheSootyShow
Posted

Hi, I'm new to all of this but have been having symptoms of celiac. I am in my early twenties. My GP referred me for a blood test. My biggest symptoms are stomach pain, severe itching/ eczema, headaches, extreme fatigue and muscle ache (some days it's hard to even move),  feeling just generally depressed, mood swings,  tingling in hands and feet, mouth ulcers, brain fog etc. I have also always been tiny, look alot younger and hit puberty very late. 

 

I guess I'm just feeling a bit down, because I've been waiting so long for this test. I research celiac all day everyday. I obviously don't want to be celiac, but at the same time I really want an answer to all my miserable symptoms. If it's not celiac then I'm back to the drawing board and I'll still feel rubbish.

 

Any advice/ words of wisdom would be much appreciated. Thank you! 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

When is your blood test? Be sure not to attempt cutting back on gluten until all testing is over, including the endoscopy/biopsy that your physician may order in addition to the blood test. Keep us posted as to the blood test results. There is also another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) which shares many the same symptoms as celiac disease and is 10x more common. But there is no test for NCGS. Celiac disease must first be ruled out.

Edited by trents
TheSootyShow Apprentice
TheSootyShow
Posted
  • Author

Hi yes, my test is next week I'll make sure to keep eating gluten. I assume I'm eating enough gluten? I eat exactly how I would prior to symptoms (apart from maybe the odd gluten free cereal bar or something) but I'd say I eat atleast two meals containing gluten a day. 

 

I live in a home where being celiac would be easier to explain and therefore more accepted than if I was "just" gluten intolerant. So I am a bit worried about that. Although from the research I've done I've got quite alot of the celiac symptoms so I do think it's quite likely. 

trents Grand Master
trents
Posted
1 minute ago, TheSootyShow said:

Hi yes, my test is next week I'll make sure to keep eating gluten. I assume I'm eating enough gluten? I eat exactly how I would prior to symptoms (apart from maybe the odd gluten free cereal bar or something) but I'd say I eat atleast two meals containing gluten a day. 

 

I live in a home where being celiac would be easier to explain and therefore more accepted than if I was "just" gluten intolerant. So I am a bit worried about that. Although from the research I've done I've got quite alot of the celiac symptoms so I do think it's quite likely. 

Two pieces of wheat toast daily (or the gluten eqivalent) is considered enough. 

By the way, your terminology needs adjusting. "Gluten intolerant" generally is used to speak of celiac disease. "Gluten sensitive" is normally used to speak of NCGS.

TheSootyShow Apprentice
TheSootyShow
Posted
  • Author

Thank you for correcting me 😊 I'm just feeling a bit miserable about it all at the moment and just want to start feeling better asap. 

currydmc Rookie
currydmc
Posted
7 hours ago, TheSootyShow said:

Hi, I'm new to all of this but have been having symptoms of celiac. I am in my early twenties. My GP referred me for a blood test. My biggest symptoms are stomach pain, severe itching/ eczema, headaches, extreme fatigue and muscle ache (some days it's hard to even move),  feeling just generally depressed, mood swings,  tingling in hands and feet, mouth ulcers, brain fog etc. I have also always been tiny, look alot younger and hit puberty very late. 

 

I guess I'm just feeling a bit down, because I've been waiting so long for this test. I research celiac all day everyday. I obviously don't want to be celiac, but at the same time I really want an answer to all my miserable symptoms. If it's not celiac then I'm back to the drawing board and I'll still feel rubbish.

 

Any advice/ words of wisdom would be much appreciated. Thank you! 

The late puberty and small stature, 'young looking' could be describing me - I have a suspicion celiac was behind it. Most of my family were either average height or 6ft+ but I was the 2nd smallest kid in my year until about 16-17years. Mouth ulcers and dry mouth were also present since late teens.

 

Hope you get your test soon, and discover a way to stop symptoms whether celiac or a different problem. Good that they are examining you this early on. In the UK the average age of diagnosis is 40-60! That's a lot of grief.

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
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      Concerning GP advice

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the...
    2. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Here are some articles on cross-reactivity and celiac disease:
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy. I hope you've been able to acquire thiamine hydrochloride or Benfotiamine. I'm concerned. Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the ...
    4. cristiana
      - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Good evening @EssexMum You are quite right to be concerned about this situation. Once diagnosed as coeliac, always a coeliac, and the way to heal is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019. My spoken French isn't bad...
    5. EssexMum
      - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage. History: She had been having severe tummy pains on and off every...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,634
    • Most Online (within 30 mins)
      7,748
    CTALBERS
    Newest Member
    CTALBERS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Concerning GP advice

      By EssexMum · Posted

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.