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

Help needed

Mazzing
 Share

Recommended Posts

Mazzing Newbie
Mazzing
Posted

Hi female 56 living in UK. Think my symptoms started 6 years ago. 

Numbness in my hands at night-time. 6 years ago doc says carpal tunnel

Feet start to hurt getting up in the morning 3 years ago doc says use inner soles

Teeth started to just crumble 3 years ago dentist says it happens

Tummy cramps/pain doc says IBS 2 years ago had CT scan nothing showing up. 

Tingling random in all parts of the body 2 years ago doc says stress

Buzzing in head permanent doc says tinnitus.

Constipation 2 years now

Breast pain in one breast!!! 6 months had scan nothing shown on it.

Back pain 3 months.

Feeling lightheaded 3 months

Felling sick 3 months

Little more shattered than I use to be put down to age

Do you good people think I am celiac?  So fed up feeling this way now.  

 

Thank you for responding

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

Celiac.com Sponsor (A8-M):


captaincrab55 Collaborator
captaincrab55
Posted

Hi Mazzing,   Sorry to hear you are suffering with many issues.    Were you ever tested for Celiac?   Did you ever have a nerve conduction test on your hands or feet?

Mazzing Newbie
Mazzing
Posted
  • Author

Hi thank you for replying. Had test on hands but doc says I am a odd ball!!! as it's not defo carpal tunnel. Been seeing the same specialist every year for 6 years and he says the same.  Feet I saw a chiropractor and she says use in soles but that does not help. 

captaincrab55 Collaborator
captaincrab55
Posted
23 minutes ago, Mazzing said:

Hi thank you for replying. Had test on hands but doc says I am a odd ball!!! as it's not defo carpal tunnel. Been seeing the same specialist every year for 6 years and he says the same.  Feet I saw a chiropractor and she says use in soles but that does not help. 

I had some neck issues causing my hand and finger issues, before carpal tunnel issues.    For years it felt like I had all thumbs in the mornings, before being diagnosed with Celiac

 

trents Grand Master
trents
Posted

Mazzing, welcome to the forum!

There are specific tests designed to detect celiac disease.

The first stage of testing involves a blood draw and laboratory analysis to look for the antibodies produced by celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ . Since many of your symptoms are common to those with celiac disease you could go armed with this information and ask your physician to order antibody tests. The centerpiece of the celiac antibody panel is the tTG-IGA test which combines good sensitivity with good specificity. In the UK if your antibody numbers are 10x normal or higher, doctors will usually forego the second stage of testing which is an endoscopy/biopsy to microscopically check for damage to the villi that line the small bowel.

If you choose to pursue testing, please realize you must be eating regular amounts of gluten beforehand. Many make the mistake of beginning the gluten free diet before testing is complete and the healing this allows can often invalidate the tests.

Mazzing Newbie
Mazzing
Posted
  • Author

Thank you will go and see docs next week. Hopefully get some answers

Kate333 Rising Star
Kate333
Posted

Hi Mazzing.  Take Trents' advice.  It is the only way to rule out (or in) celiac disease for sure.  Hopefully, you don't have celiac disease.  If you don't, then "don't" be so quick to dismiss the docs who spoke of stress/anxiety.  Esp. chronic, severe anx/depression can present in MANY unexpected physical symptoms--including most of those you listed.  At least that has been the case with me.  Check out the Anxietycentre.com website which describes the many physical symptoms of anxeity/depression in great detail and tips for how to reduce the.   The last 2 years have been unusually stressful for so many of us, and there is no shame is asking your GP for a mental health referral.  

Best of luck to you on your healing journey!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

I would also add to what Kate333 said and point out that prolonged emotional distress can be the trigger which activates latent celiac genes.

Mazzing Newbie
Mazzing
Posted
  • Author
On 12/4/2021 at 5:07 AM, Kate333 said:

Hi Mazzing.  Take Trents' advice.  It is the only way to rule out (or in) celiac disease for sure.  Hopefully, you don't have celiac disease.  If you don't, then "don't" be so quick to dismiss the docs who spoke of stress/anxiety.  Esp. chronic, severe anx/depression can present in MANY unexpected physical symptoms--including most of those you listed.  At least that has been the case with me.  Check out the Anxietycentre.com website which describes the many physical symptoms of anxeity/depression in great detail and tips for how to reduce the.   The last 2 years have been unusually stressful for so many of us, and there is no shame is asking your GP for a mental health referral.  

Best of luck to you on your healing journey!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank you so much I will check out the site 

Mazzing Newbie
Mazzing
Posted
  • Author
On 12/4/2021 at 5:23 AM, trents said:

I would also add to what Kate333 said and point out that prolonged emotional distress can be the trigger which activates latent celiac genes.

Hi yes I have been stressed most of the year. Heart op in march did not help.  Blood test done now the wait for results. Thank you all for replying. 

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. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.