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

Got Results Back Its Not Lupus

jhol

By jhol
in Related Issues & Disorders

Recommended Posts

jhol Enthusiast
jhol
Posted

so once again i get a negative result!!!

 

not sure how long i can cope with all this .im so fed up at the moment. i dont have lupus but my blood sugar is a tiny bit high ( the nurse said its hardly worth commenting on)- but they are gonna do a diabetes test anyway. my b 12 is low so ive got some tablets to take. when the doc was looking at the computer i was having a sneaky read - my b12 was 138!! i thought that was really low- so now im taking tablets for 3 months with no way of knowing if they are being absorbed or not.

she has said that shes refered me to a dermatologist for the rashes which is good- hopefully i,ll get some answers from them.

i did think i saw a few abnormals on the test results when i was having a sneaky peek so im gonna ring up tomorrow and ask for copies and copies of the last one that had the celiac tests on. that should be interesting to see exactly which tests they did.

 

so ive had my moan lol. hope i get some answers soon..

 

 

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I'm glad to hear that it is not Lupus.

 

There is enough evidence to show that gluten is "more complex" for the human digestive track and that auto-immune disorders do better on a gluten free diet.When your testing is complete, try a gluten free diet.  If you feel better not eating gluten, then don't eat it.  Your body's reaction is a "scientific" proof.  (You will unfortunately have an accidental glutening that may prove this.)

ravenwoodglass Mentor
ravenwoodglass
Posted

Low B12 can really mess with your nervous system and more. Hopefully the tablets you are taking are sublingual. Sublinguals are absorbed by the mucus membranes in your mouth and bypass a damaged gut. Hope you get some answers soon and once your celiac testing is finished be sure to give the diet a good strict try for a bit.

nvsmom Community Regular
nvsmom
Posted

Celiac can mimic lupus, there are a handful of us around here who thought we had it because our symptoms were the same. Luckily, if it is celiac disease, our symptoms will improve over time (years). It's toughto have no diagnosis because we aren't given meds to treat symptoms in the short term, but at least we have the potential to get better in the long run.

 

I hope you feel well soon.

jhol Enthusiast
jhol
Posted
  • Author

I'm glad to hear that it is not Lupus.

 

There is enough evidence to show that gluten is "more complex" for the human digestive track and that auto-immune disorders do better on a gluten free diet.When your testing is complete, try a gluten free diet.  If you feel better not eating gluten, then don't eat it.  Your body's reaction is a "scientific" proof.  (You will unfortunately have an accidental glutening that may prove this.)

hi thanks for answering

 

i am doing gluten free - since january. i felt fantastic at first then other symptoms kicked in. gave up dairy, soya and nightshades. but any testing i had done was all negative. i still have joint pain and so tired. but now im b12 deficient im now thinking that all my problems are down to that and maybe im not gluten intolerant at all. this not having a diagnosis is really getting to me. i did get my results off the doctor but theres only one test been done. dont know if you know anything about the tests but here's what was done.

. iga level       0.7          u/ml       (<6.9 u)        nk         normal

jhol Enthusiast
jhol
Posted
  • Author

oh forgot to mention that ive started to "grow" lumps on my middle knuckle of my middle finger. worst on my right hand but my left is starting to go the same way. thats why the doctor tested me for auto immune disease. but the only thing they,ve found is the low b12- dont know if the knuckle thing could be coz of that ?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,491
    • Most Online (within 30 mins)
      7,748
    Lzzzm
    Newest Member
    Lzzzm
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      @Celiac50, Other than finding foods that make your tummy happy, are you feeling well?  No other symptoms?  That's great progress! You don't mention vitamin D status.  Vitamin D deficiency in the UK has been estimated to be as high as 60% of the population. Celiac Disease causes depleted oral vitamin D from malabsorption.  Most people do not get enough UV light to activate skin creation of vitamin D. Vitamin D supplementation in the United Kingdom: time for change Vitamin D Is Not as Toxic as Was Once Thought It looks like you are going to have to try changing out food by food, until you find the one.  Start with the supplements.      Wild caught vs. farm raised?  Sometimes it is just a subtIe change that can do it. I know that switching to grass fed milk has been good for me.
    • RMJ
      7yo struggling!

      By RMJ · Posted

      The incidence of autoimmune diseases in general, including celiac disease, has increased.  There are various theories as to why. The environment we live in, diet we eat, toxins we’re exposed to, stress levels, activity levels and infectious diseases to which we are exposed are all quite different now. A robust immune system that would have been an advantage thousands of years ago may be a bit too robust for modern life.
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      @Celiac50, Most Celiac patients with a Marsh score as high as yours are more likely to suffer from fat malabsorption and deficiency in fat soluble vitamins, Vitamins A, D, E, and K.   Vitamin A toxicity does not cause Celiac disease.  Your Vitamin A toxicity was probably developed after your diagnosis and subsequent over-supplementation.  Fish contains thiaminases, chemical compounds that destroy thiamine, Vitamin B 1, making the thiamine unusable.  Excessive intake of foods containing thiaminases can precipitate low thiamine.   Low thiamine can also be a result of bacterial or yeast infections.  A high carbohydrate diet encourages Candida and bacterial infections.  High carbohydrate diets promote SIBO and Candida because they feed on the excess carbohydrates and suppress the beneficial bacteria.  Other types of bacteria can take advantage of this and set up housekeeping outside the gastrointestinal tract, including bacterial vaginosis. Thiamine Vitamin B 1 can alter the microbiome.  Thiamine has been shown to suppress Candida, SIBO, and other bacterial and viral infections, and favor the growth of beneficial bacteria.  My SIBO cleared once I supplemented with Benfotiamine, a form of thiamine that has been shown to promote intestinal healing, and a B Complex.  Thiamine works in concert with the other B vitamins and magnesium. Thiamine helps to lower histamine levels by calming mast cells that release histamine at the slightest provocation.   Following the Autoimmune Protocol diet also helped immensely in getting my digestive system calmed and able to tolerate more foods. Have you discussed with your doctor and dietician supplementing essential B vitamins while healing?  What is your Vitamin D level?  Vitamin D helps calm the immune system.  
    • cristiana
      Has anyone ever had Low Ferritin with Elevated MCHC levels?

      By cristiana · Posted

      Update - my Active B12 is 36.  Apparently lab results between 25 and 70 suggest a possible deficiency, anything below 25 is a confirmed deficiency, above 70 is normal.   I am thinking this could be the explanation for my elevated MCHC. Anyway, yet again I find myself bumping along the levels of low normal by British NHS standards, which isn't great, because from what I understand, in the UK our normal levels are set low and 'lower normal' levels would be considered a deficiency in such countries as Germany and Japan. Regarding B12 levels, it doesn't look as if my levels are low enough to be offered B12 injections.  That being the case, I remember reading that sublingual tablets can still be very effective but one particular type is better than another - I can't remember which type.  Can anyone help?
    • cristiana
      Unusual bright yellow but odourless discharge

      By cristiana · Posted

      Hi @Celiac50 If you are after a vitamin A test - sorry - I'm tired so not sure if I'm reading this correctly - perhaps you could try a home test?  I'm in the UK and am currently a bit perplexed about my own vitamin issue and thinking of going to a private lab for tests.  My issues is suboptimal Active B12 (only 11 marks off deficient) but no health professionals seem to be taking any interest in it although this is  my fault as last time I saw my Consultant I failed to mention my symptoms - I had so many other questions to ask him.  Anyway - here are the details for an A test: https://www.medichecks.com/products/vitamin-a-retinol-blood-test?gad_source=1&gad_campaignid=11996732820&gbraid=0AAAAAD9XHFyeAOrxlryOpWS_jXwZ8PCc1&gclid=EAIaIQobChMIyrjj2Pb2jwMVnJJQBh22CTkVEAAYASAAEgIGDPD_BwE
×
×
  • 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.