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

Lab Results


skbird

Recommended Posts

skbird Contributor

Well, I got the ANA titer and pattern back - 1:160 (one notch lower) and nucleolar again. I know this doesn't necessarily mean much. My hands and feet have calmed down though. But my chest pain is getting more and more constant - used to be bursts of pain out of the blue - once or twice a week. Now it's daily and not as intense, but things like lying on my right side for a while will start the pain in my left so I have to roll on my back [on edit - d'oh! repeating myself...]. Or laughing a certain way. Or breathing a certain way. Oh well...

The rest of the lab tests I think went to another lab so they are taking longer to come back. Suspense...

Thank you for your thoughts. It's finding people on the web who go through these things that make it less scary/weird/alienating. I am much more certain things will be ok, whatever happens.

Stephanie

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Guest jhmom

Hi Stephanie,

Your ANA is positive and certainly worth checking into by your rheumy. Let me know what the other labs say. You are welcome, I am happy to help in any way I can, I've been there, been through 3 doctors until I found one that would listen to me and take ALL my symptoms serious! A good way to find a good Rheumy is check with your local Lupus Chapter website and they should have a list of physicians and of course sometimes it's by trial and error.

Here is some info on ANA patterns:

The pattern of the ANA test can sometimes be helpful in determining which autoimmune disease is present and which treatment program is appropriate.

The homogeneous (smooth) pattern is found in a variety of connective tissue diseases as well as in patients taking particular drugs such as certain anti-arrhythmics, anti-convulsants or anti-hypertensives. This pattern is also the pattern that is most commonly seen in healthy individuals who have positive ANA tests.

The speckled pattern is found in SLE and other connective tissue diseases,

while the peripheral (or rim) pattern is found almost exclusively in SLE.

The nucleolar (a pattern with a few large spots) pattern is found primarily in patients who have scleroderma.

Take care :)

Link to comment
Share on other sites
skbird Contributor

I think the rheumy I went and saw is pretty cool. I only have seen him once so far but he knew a lot of stuff about gluten even, which surprised me. I am seeing him again on August 5th so I should have some more info to work with there.

Believe me I scared myself sh*tless worrying about scleroderma but I don't think that's what I have going on. I have read that nucleolar is also associated with Sjogren's syndrome so maybe there's something there. I don't know. I do know that I seem to have 3-4 symptoms of several connective tissue diseases, and add in the ANA it seems like something is going on. But none of it is very intense, which could be something to do with my diet of no gluten or nightshades or just that I'm in early stages of something. I'm feeling more optimistic about everything than I was a couple of weeks ago though so that's a big help at this point.

I'll post my other results when I get them and/or send you an email.

Thanks again!

Stephanie

Link to comment
Share on other sites
  • 4 weeks later...
julie5914 Contributor

Just found this topic and wanted to fire it up again. I got an ANA test back positive at 1:160 with a speckled pattern. I also have Raynaud's. My doc is running more tests, but he said he really has no idea what it could mean yet, if anything. He said usually you need a higher titer to be referred to a rheumy.

My neck is bothering me a lot. It feels swollen and my muscles are sore a lot, esp. in the morning. Did anyone here ever find anything more about this stuff? I definitely don't want him to say lupus, but at the same time, I would love to have my muscles and neck feel normal again. Maybe this is why I gained some weight? Inflammation? It all started when I started training for a marathon. I haven't run in 6 months though and I am still stiff and sore.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - glucel replied to Sarah Grace's topic in Related Issues & Disorders
      6

      Sarah Grace

    2. - glucel replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      abnormal weight loss

    3. - knitty kitty replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      abnormal weight loss

    4. - knitty kitty replied to Neat1's topic in Introduce Yourself / Share Stuff
      7

      Maybe celiac, maybe just ncgs?

    5. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      6

      Sarah Grace


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,077
    • Most Online (within 30 mins)
      7,748

    Graleymary24
    Newest Member
    Graleymary24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • glucel
      OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
    • glucel
      Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi may be healing and methyl helping although also eating potato chips every few days so that is probably helping too.  Taking 100 mg of b1 along with complex. I took all thiamine maybe 100 or so tablets. Brain fog diminished some and it seems swallowing trouble also diminished. Stopped taking it couple months or so ago and did not notice any reversals. I think I will finally look into bentofothiamine. Also eat 1/2 ounce liver every morning for additional v b support.                                  
    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
×
×
  • Create New...