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Speckled Ana...celiac?

sparrow

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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... :)

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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.

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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!

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