More Questions After Blood Work...

[luvrdeo]

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?!

[nvsmom]

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.

[luvrdeo]

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!

[nvsmom]

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.

[luvrdeo]

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!

[GottaSki]

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.

[nvsmom]

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:

Open Original Shared Link

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

Open Original Shared Link

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.

[luvrdeo]

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!

[luvrdeo]

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:

Open Original Shared Link

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

Open Original Shared Link

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

[Celiac Mindwarp]

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

[Gemini]

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.

[Gemini]

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!

[Gemini]

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.....

[luvrdeo]

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.