Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

More Questions After Blood Work...
0

14 posts in this topic

Been in for blood work 2 additional times since diagnosed with celiac and LC because of my overbearing fatigue - most recent test did the ANA along with 3 others which all were negative except for the ANA, which came back as speckled at 1:80. More extensive blood work tomorrow, and a recommendation to see a rheumatologist. This is all so foreign to me, just wanted some input based on the ANA results?! :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

1:80 is not a very high positive so try not to worry too much.... Easier siad than done, right? Even an infection (like an ear infection) can raise it temporarily. The speckled pattern is found with many autoimmune disorders (like RA, MCTD, lupus, sjorgens, Raynauds, Hashimotos) but it is also found in almost a quarter of the healthy population too.

Hashimoto's thyroiditis (hypothyroidism) has elevated ANA levels and can do a number on your energy levels; it is also strongly linked to celiac disease and found in almost 10% of the population... I would check out this one first. Your thyroid basically controls how your metabolism runs so if your thyroid is not putting out the hormones it should, your entire body will slow down. It REALLY affects my energy, temperature (I occasionally hit 97F, usually 96F something and my hands and feet are usually cold to the touch), hairloss, dry cracked skin, and even my pulse is slow (usually just above 60 bpm and I am not all that fit... at all LOL).

If you want to have it checked, ask the doctor to run:



  • TSH - Thyroid Stimulating Hormone is secreted by the pituitarty gland to get the thyroid to release T4 and T3 hormones. If the TSH is high [above a 5 to above a 10 depending on the doctor] that means your thyroid is not working well enough.

  • TPO Ab - Thyroid Peroxidae Antibodies will indicate an autoimmune attack on the thyroid. This should be close to a zero on the test.

  • Free T4 - Main hormone released by the thyroid, and is converted into usable T3 by various body parts. This is often on the low end for Hashi patients.

Free T3 can be very helpful later on if you are diagnosed and adjusting your med/hormone levels.

Good luck, and I hope you feel better soon.

0

Share this post


Link to post
Share on other sites

1:80 is not a very high positive so try not to worry too much.... Easier siad than done, right? Even an infection (like an ear infection) can raise it temporarily. The speckled pattern is found with many autoimmune disorders (like RA, MCTD, lupus, sjorgens, Raynauds, Hashimotos) but it is also found in almost a quarter of the healthy population too.

Hashimoto's thyroiditis (hypothyroidism) has elevated ANA levels and can do a number on your energy levels; it is also strongly linked to celiac disease and found in almost 10% of the population... I would check out this one first. Your thyroid basically controls how your metabolism runs so if your thyroid is not putting out the hormones it should, your entire body will slow down. It REALLY affects my energy, temperature (I occasionally hit 97F, usually 96F something and my hands and feet are usually cold to the touch), hairloss, dry cracked skin, and even my pulse is slow (usually just above 60 bpm and I am not all that fit... at all LOL).

If you want to have it checked, ask the doctor to run:



  • TSH - Thyroid Stimulating Hormone is secreted by the pituitarty gland to get the thyroid to release T4 and T3 hormones. If the TSH is high [above a 5 to above a 10 depending on the doctor] that means your thyroid is not working well enough.

  • TPO Ab - Thyroid Peroxidae Antibodies will indicate an autoimmune attack on the thyroid. This should be close to a zero on the test.

  • Free T4 - Main hormone released by the thyroid, and is converted into usable T3 by various body parts. This is often on the low end for Hashi patients.

Free T3 can be very helpful later on if you are diagnosed and adjusting your med/hormone levels.

Good luck, and I hope you feel better soon.

They did my TSH and T3 levels, all of which were normal. Everything they've run my blood for has been negative except for the ANA. I go back in today for more extensive bloodwork, I'll see what they come up with. AND I'll try not to worry!! Quite the learning experience this has been...thanks for the good luck wishes, I hope I feel better soon as well, this has been a serious struggle!

0

Share this post


Link to post
Share on other sites

Someone on the forum, I can't remember who, told me that their GI doc told them that celiac can cause a positive ANA too. I'm not entirely sure that's accurate as the only documents I can find on the topic say otherwise. Anyway, it could be something to consider too.

It is hard to wait isn't it? I've had some abnormal tests in the past and symptoms that have me worried about lupus or something similar. I'm waiting to hear from a rheumy too.... Patience is hard isn't it?

Did they run an ENA panel on the various antigens that can show up in connective tissue AI diseases? Or TPO Ab which will show if you have an autoimmune thyroid problem even if your TSH happens to be normal (which is close to a 1)?

Good luck with the tests.

0

Share this post


Link to post
Share on other sites

Someone on the forum, I can't remember who, told me that their GI doc told them that celiac can cause a positive ANA too. I'm not entirely sure that's accurate as the only documents I can find on the topic say otherwise. Anyway, it could be something to consider too.

It is hard to wait isn't it? I've had some abnormal tests in the past and symptoms that have me worried about lupus or something similar. I'm waiting to hear from a rheumy too.... Patience is hard isn't it?

Did they run an ENA panel on the various antigens that can show up in connective tissue AI diseases? Or TPO Ab which will show if you have an autoimmune thyroid problem even if your TSH happens to be normal (which is close to a 1)?

Good luck with the tests.

It is hard...donated some more blood today, they are testing for:

ANTI-Sm

ANTI-RNP

Anti-SSB

Anti-Top 1

Anti-SSA

Hopefully it all comes back ok. They're definitely worried though because of how tired I am!

0

Share this post


Link to post
Share on other sites




I'm glad to see you are having additional testing as it is important to rule out other causes of fatigue.

Did you have fatigue prior to Celiac Diagnosis? It can take many months gluten-free for fatigue to improve and it can even worsen in the early months. I had some improvement in the first weeks gluten-free, but my fatigue worsened for several months post celiac diagnosis.

Besides additional testing - your best course of action is to eat plenty of whole foods, avoid processed foods, get moderate exercise and if your body needs rest, then rest -- others gave me this advice and I know I did not do a great job adhering to it at first.

Hang in there - your body needs lots of energy to heal and will leave you feeling worse some days / better on other days.

0

Share this post


Link to post
Share on other sites

It is hard...donated some more blood today, they are testing for:

ANTI-Sm

ANTI-RNP

Anti-SSB

Anti-Top 1

Anti-SSA

Hopefully it all comes back ok. They're definitely worried though because of how tired I am!

I found the Lab Tests Online site very helpful for linking tests to AI diseases. This site discusses the ANA test and what it indicates:

http://labtestsonline.org/understanding/analytes/ana/tab/test

This site discusses the ENA panel which is basically what they've run on you:

http://labtestsonline.org/understanding/analytes/ena-panel/tab/test

Hopefully your symptoms are celiac related although it's hard to tell since so many symptoms overlap.

If you don't get answers, you might want to request the TPO Ab test for Hashimotos hypothyroidism. The TSH and T3 can be normal and you can still feel poorly if your thyroid is under attack. For instance, My past TSH readings were 6.7 (not sure of the decimal), 4.71 a couple weeks later, 2.68 (tested a few years later because my body temp didn't get above 97F), and 14.27 (a few months back when they finally agreed something was wrong) and 7.5 or so recently which is from being treated... and my doctor thinks it's almost normal yet I feel no different than when TSH was 13 or 2.68. All of my tests reference ranges are 0.20-6.00. Your TSH can vary wildly if you have TPO Ab and you can feel poorly in the normal range.

I hope your tests are back soon and that you can find your "get up and go" once again. Best wishes.

0

Share this post


Link to post
Share on other sites

I'm glad to see you are having additional testing as it is important to rule out other causes of fatigue.

Did you have fatigue prior to Celiac Diagnosis? It can take many months gluten-free for fatigue to improve and it can even worsen in the early months. I had some improvement in the first weeks gluten-free, but my fatigue worsened for several months post celiac diagnosis.

Besides additional testing - your best course of action is to eat plenty of whole foods, avoid processed foods, get moderate exercise and if your body needs rest, then rest -- others gave me this advice and I know I did not do a great job adhering to it at first.

Hang in there - your body needs lots of energy to heal and will leave you feeling worse some days / better on other days.

The fatigue started long before I knew I had celiac, it just got worse after going off gluten. I am on a very strict paleo diet, and never have been much for processed foods. I tried to push myself physically and ended up close to puking and dang near passing out. I've yet to have those "better days"...but I'm hoping they are in the near future!

0

Share this post


Link to post
Share on other sites

I found the Lab Tests Online site very helpful for linking tests to AI diseases. This site discusses the ANA test and what it indicates:

http://labtestsonline.org/understanding/analytes/ana/tab/test

This site discusses the ENA panel which is basically what they've run on you:

http://labtestsonline.org/understanding/analytes/ena-panel/tab/test

Hopefully your symptoms are celiac related although it's hard to tell since so many symptoms overlap.

If you don't get answers, you might want to request the TPO Ab test for Hashimotos hypothyroidism. The TSH and T3 can be normal and you can still feel poorly if your thyroid is under attack. For instance, My past TSH readings were 6.7 (not sure of the decimal), 4.71 a couple weeks later, 2.68 (tested a few years later because my body temp didn't get above 97F), and 14.27 (a few months back when they finally agreed something was wrong) and 7.5 or so recently which is from being treated... and my doctor thinks it's almost normal yet I feel no different than when TSH was 13 or 2.68. All of my tests reference ranges are 0.20-6.00. Your TSH can vary wildly if you have TPO Ab and you can feel poorly in the normal range.

I hope your tests are back soon and that you can find your "get up and go" once again. Best wishes.

Thanks for the advice on what else I can get tested for! I hope this is all celiac related - and that it gets better soon! I leave for Italy on Thursday and was hoping I'd have more energy by now...maybe a vacation will do the trick :P

0

Share this post


Link to post
Share on other sites

Italy is SO beautiful. Maybe you can at least get some nice shoes to cheer you up?

Hope you energy improves and you get that next bit of puzzle

0

Share this post


Link to post
Share on other sites

Someone on the forum, I can't remember who, told me that their GI doc told them that celiac can cause a positive ANA too. I'm not entirely sure that's accurate as the only documents I can find on the topic say otherwise. Anyway, it could be something to consider too.

It is hard to wait isn't it? I've had some abnormal tests in the past and symptoms that have me worried about lupus or something similar. I'm waiting to hear from a rheumy too.... Patience is hard isn't it?

Did they run an ENA panel on the various antigens that can show up in connective tissue AI diseases? Or TPO Ab which will show if you have an autoimmune thyroid problem even if your TSH happens to be normal (which is close to a 1)?

Good luck with the tests.

That was me who told you that Celiac can raise ANA. It is very accurate but you will not find that information easily. It falls into the category of

"most doctors know jack squat about Celiac". Celiac can also raise blood protein levels, which will freak a doctor out as that can be indicative of Multiple Myeloma. I had this information confirmed by a great hematologist who knew a lot about AI diseases.

My ANA and RF tests were in the stratosphere when I was first diagnosed with Celiac. It's been 7 1/2 years gluten-free and every time I ask for them to be re-tested, they are coming down. They are half of what they used to be. My blood protein levels are normal now also. Sometimes I really think that these tests are just a way to keep rheumatologists employed. People worry needlessly about them when many times it's the Celiac.

1

Share this post


Link to post
Share on other sites

It is hard...donated some more blood today, they are testing for:

ANTI-Sm

ANTI-RNP

Anti-SSB

Anti-Top 1

Anti-SSA

Hopefully it all comes back ok. They're definitely worried though because of how tired I am!

I do know that they SSA and SSB tests are for Sjogren's Syndrome. I have Sjogren's.

Fatigue can be caused by just having AI diseases so it could be from that. You may have other ones as they come in clusters sometimes. I have 4 AI diseases total but have been gluten-free for a long time and all of them have gotten immensely better. I do get tired though but just push through it. I don't have a choice.

You'll get this figured out but try not to worry too much. AI diseases can be very manageable, especially if you follow a strict gluten-free diet. That is the single most important thing you can do!

0

Share this post


Link to post
Share on other sites

The fatigue started long before I knew I had celiac, it just got worse after going off gluten. I am on a very strict paleo diet, and never have been much for processed foods. I tried to push myself physically and ended up close to puking and dang near passing out. I've yet to have those "better days"...but I'm hoping they are in the near future!

You know, sometimes not eating carbs can make one very fatigued. Carbs are a major energy source and some people do not do well without them. There are good quality carbs out there....not all are crappy processed foods. Just something to think about.....

0

Share this post


Link to post
Share on other sites

You know, sometimes not eating carbs can make one very fatigued. Carbs are a major energy source and some people do not do well without them. There are good quality carbs out there....not all are crappy processed foods. Just something to think about.....

I'd blame it on that if this hadn't been going on for so long. I get plenty of carbs from healthy foods, close to 40% of my diet is carbs. It doesn't seem to matter what I do or don't eat...I'm tired regardless. :unsure:

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,131
    • Total Posts
      919,521
  • Topics

  • Posts

    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
    • Yeah I actually live in Japan which is pretty similar, because Coeliac disease is rare over here so is the understanding and accommodating it. When I mention Gluten to some restaurants they think I am talking in English and they are unfamiliar with the word in Japanese.    So it seems I can write off my chances of getting some authentic Chinese gluten-free food at the airport, but at least there is a Thai restaurant in T3 so I won't starve. Its called  'Phrik Thai' for future reference. http://en-shopping.bcia.com.cn/store/739.html  
    • While in Boston I found Cheer's  Bloody Mary mix that says gluten-free on the bottle and have had no issues and  tastes pretty good 
    • I always assumed plain coffee was, but I have seen some controversy online about this. I know someone who is gluten free and only buys whole beans and grinds them herself because she doesn't trust how the grounds are processed.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,166
    • Most Online
      1,763

    Newest Member
    jen4az
    Joined