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

Speckled Ana...celiac?

sparrow

Recommended Posts

sparrow Rookie
sparrow
Posted

I'm new here. I have some questions if anyone has opinions or answers... My main question is can speckled ANAs point to celiac's (usually seems to point to conn. tissue diseases, lupus, etc). I recently had bloodwork done by my ob/gyn -- thought I had some hormone imbalance or thyroid problem. I'm 33 with 3 kids -- youngest is 2 1/2. She threw in the ANA panel just to rule out other things. Turned out, that's the one thing that came back abnormal -- 1:640 speckled. Now I'm waiting to get in to see a rheum. -- appt sched. for nov. 24.

This whole process is taking a loooong time and I don't feel so great. I've had digestive "issues" such as constipation, gas, bloating since I was little. Diagnosed with IBS 5 yrs ago. Have had unexplained cramping, pain that causes you to double over at times and then it disappears -- this is not frequent though. Very sensitive to sugar alcohols. something that is progressively getting worse is that I'm very tired, feel achey like I'm sick (especially if I'm really active, stressed, etc.), I have tension headaches that run from my neck to my shoulderblades. I have and have always had a big appetite, but harder to control right now -- depressed at times, irritable -- makes it hard to diet and exercise and stick with it. Gaining weight, harder to lose. I have floaters in my visual field, sometimes get a little dizzy, I feel forgetful, foggy, and like a complete airhead sometimes.

I have suspected that I might be gluten intolerant since I heard about what it is through a friend who has celiac's. When I am on a clean, detox-type diet, I feel better -- I always associate that type of diet with a lot less gluten adn sugar.

I know I could go in, have more blood drawn and they say I have lupus, but celiac's makes more sense and I've heard that gluten intol. can lead to other autoimmune diseases too? I want so bad to cut the gluten out, but know my test results will be different if I do...hard to sit and wait when I have a hunch...Will the rheum. do a celiac panel or is she likely to defer to a GI doc?

Thanks to anyone with enough patience to read all of that... :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I would call the doctor that ordered the original blood tests and ask them to call in or let you pick up a script for a celiac panel, including a total IGA as well as the celiac tests. They shouldn't need to see you to do this. Also ask them to send you a copy of the results as soon as they are in. You don't need to see either a GI or the rheumy to have this test run and that way the results will be in couple weeks and if you need a referral to a GI you can get one.

climbmtwhitney Apprentice
climbmtwhitney
Posted

Hi.

I don't know if speckled ANA's are correlated with Celiac/gluten intolerance, but for the record, myself and 3 children all have them. 2 of us are Celiac and 2 gluten intolerant. Strange. The doctors never did figure out why.

Your symptoms sound a lot like mine and a lot of others here, so do go for a full screen before you try the diet. I hope you get some answers soon. Feel better!

Jillian

P.S. If everything comes back negative, you may still want to give gluten-free a go & see what happens. Seems there's a lot of folks in that boat too.

sparrow Rookie
sparrow
Posted
  • Author
I would call the doctor that ordered the original blood tests and ask them to call in or let you pick up a script for a celiac panel, including a total IGA as well as the celiac tests. They shouldn't need to see you to do this. Also ask them to send you a copy of the results as soon as they are in. You don't need to see either a GI or the rheumy to have this test run and that way the results will be in couple weeks and if you need a referral to a GI you can get one.
sparrow Rookie
sparrow
Posted
  • Author

I'm trying to reply here and obviously have never done this so bear with me. :) I think I just posted your reply above...this is in response to your comment, ravenwoodglass.....Anyway, so what is a "script"? They wouldn't have to draw my blood again? how does that work? Thanks for the info!

sparrow Rookie
sparrow
Posted
  • Author
Hi.

I don't know if speckled ANA's are correlated with Celiac/gluten intolerance, but for the record, myself and 3 children all have them. 2 of us are Celiac and 2 gluten intolerant. Strange. The doctors never did figure out why.

Your symptoms sound a lot like mine and a lot of others here, so do go for a full screen before you try the diet. I hope you get some answers soon. Feel better!

Jillian

P.S. If everything comes back negative, you may still want to give gluten-free a go & see what happens. Seems there's a lot of folks in that boat too.

Thanks! It's nice to be validated. I've spent a long time feeling like I'm just an out of shape, stressed out mom -- I'm relieved to know that I can do something about it. It's hard to wait, though, when I'm trying to be a mom of 3, wife, and lots of other things...Life goes on whether I feel good or not. I also have a son who complains of tummy aches more often than I like, he's forgetful, clumsy, and "in his own world" a lot. Very imaginative and smart and happy, but I wonder about him possibly having whatever problem I might have.....Another reason I want to get on with this....Looking forward to answers. :) Thanks so much...

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm trying to reply here and obviously have never done this so bear with me. :) I think I just posted your reply above...this is in response to your comment, ravenwoodglass.....Anyway, so what is a "script"? They wouldn't have to draw my blood again? how does that work? Thanks for the info!

Perhaps a better word would have been a 'lab slip'. It is just the slip you take to the lab that the doctor writes what tests he wants done on. They will need to draw blood again.

Do not go gluten free until after all testing is done, including the endoscopic exam if you are having one. As for your son ask your ped to test him. After all the tests are complete do give the diet a good strict try as there are often false negatives with testing. False negatives with young children are even more common than adults so IMHO when you try it for yourself it wouldn't hurt to have your son give it a try also.

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

Celiac.com Sponsor (A8-M):


sparrow Rookie
sparrow
Posted
  • Author
Perhaps a better word would have been a 'lab slip'. It is just the slip you take to the lab that the doctor writes what tests he wants done on. They will need to draw blood again.

Do not go gluten free until after all testing is done, including the endoscopic exam if you are having one. As for your son ask your ped to test him. After all the tests are complete do give the diet a good strict try as there are often false negatives with testing. False negatives with young children are even more common than adults so IMHO when you try it for yourself it wouldn't hurt to have your son give it a try also.

Great advice -- thank you!!

sparrow Rookie
sparrow
Posted
  • Author

I took the advice and called the original dr. that ordered the original bloodwork with high ANAs...she immediately ordered the celiac panel. Had blood drawn Mon. and had results back Thursday -- negative. ?? So I still have an appt with the rheum. Do I make an appt also with a GI or just wait until I see the rheum.? That appt is on the 24th of Nov. unless they get a cancellation b/n now and them. Do I still need an endoscopy? Or is the neg. bloodwork where it ends? And btw, I had the nurse read me the results to see if I had anything borderline...nothing seemed borderline. She's mailing me copies of all the bloodwork so can have it and take it with me when I go to other drs.

Sometimes I feel like I'm trying to talk myself into this, but it really makes the most sense to me. Even if I don't have celiac's, isn't it possible that I am gluten intolerant? If so, does that mean that this intolerance may cause other autoimmune diseases (say for instance they determine that I have lupus) couldn't the gluten intol. possibly be the root problem? I'm so tempted to try the gluten free diet but am afraid it may skew the other test results that the rheum. is most definately going to order. If I have an autoimmune disease or something, couldn't a gluten free diet help it, thus making it harder to pinpoint and diagnose?

Any thoughts?

CMG Rookie
CMG
Posted
Thanks! It's nice to be validated. I've spent a long time feeling like I'm just an out of shape, stressed out mom -- I'm relieved to know that I can do something about it. It's hard to wait, though, when I'm trying to be a mom of 3, wife, and lots of other things...Life goes on whether I feel good or not. I also have a son who complains of tummy aches more often than I like, he's forgetful, clumsy, and "in his own world" a lot. Very imaginative and smart and happy, but I wonder about him possibly having whatever problem I might have.....Another reason I want to get on with this....Looking forward to answers. :) Thanks so much...

I also have speckled ANA, and I have had low white blood counts for at least 15 years - also associated with auto immune diseases. My symptoms were a lot like what you describe. When I was 38 I was diagnosed with rheumatoid arthritis and sjogren's syndrome. I have never been diagnosed with celiac, although I do know that I carry one of the genes. I was gluten "lite" for 2 years, and have been gluten free for 8 months. Since going gluten free my arthritis symptoms have improved significantly and sjogren's has improved a bit. Also, I have a normal white blood count for the first time in 15 years. I have not had ANA retested.

Based on my experience, I agree with those who say try the diet regardless of what the tests say. Also, for the record, I started down this gluten free road after someone suggested that it might be the root of my daughter's tummy aches. She was 4 at the time and had daily tummy aches from the time she was about 2. Also various other aches and pains and like you describe your son "in her own world". She's like a different kid on the gluten free diet.

sparrow Rookie
sparrow
Posted
  • Author

I'm definately learning a lot here from all of your experiences...I just started gluten free diet today, not completely successful, but then again, I haven't gone to the store yet. I'm going to a friend's house tomorrow (who has celiac's) in order to check out her fridge and pantry. Like a hands on workshop. I'm definately going to have my son tested. Calling the dr. this week...

I'm a little overwhelmed at the complete and total lifestyle change, I have to be honest...I want to give the diet my very best so I can know for a fact if gluten is my problem, but when I read about changing out cookware and looking at impossible words on labels, I start getting a little frazzled-feeling... (that's probably also caused by gluten....heehee :lol: ) I am going to take the advice of my friend and others and start very simply and educate myself and fine tune as I go. Are there any recommendations as to how long this might take to really know if this is the lifestyle for me? Any other tips on getting started? Keeping in mind that I'm testing it out bc my blood tests are negative right now...

Thanks!

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.