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

My Friend


beelzebubble

Recommended Posts

beelzebubble Contributor

hi,

i thought i might mention this here as we are all very familiar with auto-immune disorders.

my closest friend has been ill for about a year. as far as i can tell, her main symptoms have been lethargy, insomnia, nausea, diarrhea, bruising, and joint pain. she's having trouble getting any sort of concrete diagnosis. she was given the blood test for celiac, but it came back negative so the doctor won't pursue that (though, we all know that it's still a likely possiblity). she tested negative for the rheumatoid factor, but positive for anti-nucleus antibodies and mono. her current diagnosis is rheumatoid arthritis.

does anyone have any thoughts? i'm really worried about her and will do whatever i can to help her get well, so if you have an idea but need more info, ask and i will get it.

thanks, in advance, for your help.

carrie


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



Celiac.com Sponsor (A8-M):



CoolCat1 Rookie

It could be Lupus. Also, my friend's husband has rhematoid arthritis and I suggested he go gluten-free and she says he's way better. He's starting to get more movement and has no more abdominal pain.

vany4 Newbie

I have many of the same symptoms. Has she been tested for Lyme disease? Has she gotten her thyroid tested? Just a couple of thoughts..

sasha Newbie

Hi ~

I'm new here. Just saw this post and can relate. I was diagnosed with fibromyalgia about a year ago. I've recently through a chiropractor's suggestion started avoiding gluten. His reason for me avoiding it was due to a mold allergy. I have had some improvements with my symptoms and done a small amount of research, without much luck. I just found out the term celiac today. So, I'm wondering...got the wheels spinning as to wether or not I might have celiac disease.

I have been tested for almost every auto immune disorder/disease with negative results. Blood work showed that I have an auto immune deficiency. And a rheumy diagnosed the fibro, I think just to get me out of her hair. I tend to be a thorn in my docs sides (very proactive about my care).

Any tips or advice would be welcome. I've tried reading through posts, but am overwhelmed with how many there are. Can anyone offer a starting point? Thank you.

Sasha

3boyzmom Newbie

Carrie,

Question about the negative Celiac blood panel... Was she within normal limits of all the tests or was any of it positive. Reason I ask is that sometimes if the IgA and tTg are normal regardless of an elevated IgG the results could be read as negative for Celiac's disease.

But an elevated IgG could indicate a gluten intolerance that has not led to Celiac's disease. Many doctors do not recognize the validity of being gluten intolerant or gluten sensitive...

Although someone who has Celiac's disease is gluten intolerant, you can be gluten intolerant and NOT have Celiac's disease. The gluten intolerance is, in my opinion, what leads to the various auto immune disorders.

If her anti-bodies to gliadin are all normal then she'll have to start checking elsewhere.

Just a thought,

Priscilla

  • 2 weeks later...
beelzebubble Contributor

these are all good suggestions. i will talk with her a bit about them. as far as the celiac test goes, i'm not sure. all i know is that she tested negative. i'll ask her.

thanks,

carrie

Guest barbara3675

I have fibromyalgia, have a granddaughter who is a diagnosed celiac, and I blood tested negative with a normal SED rate. I bought the best Enterolab test there was and just got it back and I am gluten intolerant and also cannot tolerate cow's milk. I wonder how my doctor is going to react to this information when I present it to him. If he doesn't accept it, I will be finding a doctor who is more understanding. I have been eating gluten-free for two months now and all the tummy tenderness is pretty much gone, so that should be one CLUE right there. Milk and ice cream give me a real bloaty, gassy feeling and I can go from constipation to diarreah in a heartbeat. I think Enterolab is the way to go. Barbara


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



Celiac.com Sponsor (A8-M):



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. - Scott Adams replied to Dora77's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Is this safe for someone with celiac disease?

    2. - Scott Adams commented on dixonpete's blog entry in Pete Dixon
      7

      A video with researcher William Parker about Helminthic Therapy

    3. - Scott Adams replied to Mnofsinger's topic in Related Issues & Disorders
      8

      Food Tasting Salty

    4. - trents replied to KCGirly's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Symptoms and trying to figure this out

    5. - KCGirly posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Symptoms and trying to figure this out


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,890
    • Most Online (within 30 mins)
      7,748

    Anita Brown
    Newest Member
    Anita Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Scrubbing with soap and water well should be enough to clean a pan so that it is safe for those with celiac disease. Different celiacs will react to different levels of gluten.
    • Scott Adams
      I'm not making any claims about what your issue is regarding you issue with saltiness, I only wanted to dispel the claim that histamines have a salty taste. Most foods, particularly in the USA, are in fact, too salty. The spike in overly salty foods that has occurred in the USA since the 1950's junk food explosion has caused many foods to be overly salty, and has changed our taste buds to not be able to recognize this. If friends or family visit me from Europe or Asia, some of them notice this right away, but as American junk foods have spread worldwide, less people notice this issue, as it is becoming a worldwide issue.
    • trents
      Welcome to the forum, @KCGirly! From Wikipedia on Semaglutide: "The most common side effects include nausea, vomiting, diarrhea, abdominal pain, and constipation." How much gluten are you consuming daily? Recently revised recommendations are for the daily ingestion of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for at least 2 weeks prior to celiac disease testing, either via blood antibody tests or endoscopy/biopsy in order to ensure valid test results. Your GI doc's instructions barely fit into that time window. I hope it is sufficient to yield valid biopsy results. About your episode(s) after reintroducing gluten on 12/23 after starting a gluten free diet on 11/29. You stated at the outset of your narrative that historically these episodes occurred about every two weeks and that was before you trialed the gluten free diet. I would point out that you had only been eating gluten free for three weeks before the episode on 12/23. So, I'm not sure you can attribute that episode to the return to gluten consumption.  In addition to celiac disease, there is another gluten-related health issue known as NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Also, can you specify which test or tests for celiac disease were ordered by your GP? There are a number of serum antibody tests that can be run in order to detect celiac disease but many physicians will order the minimum instead of a more extensive panel. What one test misses, another may catch.
    • KCGirly
      Back in September I started Semaglutide for weight loss. Shortly after starting I started having stomach issues - vomiting, diarrhea, red itchy palms and elevated heart rate.  I would have The episodes were every two weeks or so.  I stopped taking the semaglutide, but continued to have episodes.  GP ran bloodwork all normal, including celiac.  Ordered a stomach emptying test it was normal too.  The itchy palms stumped him.  So he ordered blood allergy test all came back normal no allergies. He had me go gluten free 11/29.  Finally got into a GI doc on 12/16.  She wanted me to reintroduce gluten back in my diet on 12/23 and then have scope on 1/8.  Well, 5 days in with gluten, I had an episode. I’m not sure I can keep eating gluten for 10 more days.  I have PTSD thinking about possibly having an episode(s) again.  Anyone going through this? Or have thoughts/suggestions?
    • emily 1
      Very helpful. Oh yes, I am quite fastidious about not falling off the diet. It's just that the list of things I must add to the restrictions seems to grow.   
×
×
  • Create New...