Probability of False Positive?

[marren27]

Hi Celiac community,

I got a stress fracture and then went to a bone doctor, who tested me for Celiac. I was surprised (but not really, I had terrible symptoms to wheat as an infant but that is another story) when my blood test results came back. Anti tTransglutaminase, IgA was >250 (normal 0-13), and Anti Deaminated Gliadin, IgG was 68 (normal 0-13). At the same time, my TSH was a bit low so I was advised to drop my thyroid dose, which I have done. 

A week later, I left for an internship overseas, and have to wait 3 months to get scoped. Due to my stress fracture, my doctor advised me to eat gluten-free anyway, which I have been doing (with a few mishaps, argh, and I am still eating oats). I feel like I am sitting in limbo--do I have Celiac's or not? I realize this is not somewhere I can get a definitive diagnosis, but what is the probability that these tests were false positives due to my thyroid medication being too high? I will get scoped next month or do a genetic test, or both.

[ravenwoodglass]

Considering your numbers are that high the chance of a false positive in your case is slim. sometimes numbers will only be elevated a little bit but your numbers are really high. Your doctor may be planning on retesting your antibodies and your recovery and diagnosing that way. If he wants to do an endo make sure you go back on gluten for at least a couple weeks to a month before.

You may want to drop the oats. Add them back in after you have been feeling well for a while to see if you react. Some of us react to even gluten-free certified oats. Do be sure to read the Newbie 101 thread at the top of the Coping section if you haven't already. It has a lot of good info for you.

 

[marren27]

Thank you for your response, ravenwoodglass. This is in line with what I've found from medical--that both of these tests have high specificity. 

I will take a look at the thread, this looks like a great community to get guidance. I appreciate your warning because oats have always been a big part of my diet, and could have played a role in my numbers.

[ironictruth]

You might want to stay on gluten for the scope. 3 months off is awhile.  I doubt you would fully heal or anything during that time. But you may start to heal. Especially if  you already feel like you're in limbo. Some folks are fine with positive blood work and committing to the diet but if you feel like you're in limbo you probably want the scope. And it's a good idea to stay on gluten. Although some celiac centers suggests two to three weeks of eating gluten before the scope, there's a number of studies that also suggests it could take more than 3 to 4 months to cAuse mucosal relapse.  it probably would be better not to chance it if you plan on getting the scope. Try to eat it everyday, even if just a little. 

Oats should not impact the numbers. They just can be hard on the sensitive tummy. 

 There is always a possibility of false positives.  There is a constant learning curve In Medicine. 

Probably you will  come back positive on the biopsy For celiac. But you never know, you could end up a case Study.  There are plenty of thyroid receptor cells in the gut. 

 Since you need to be on gluten for the biopsy, and it sounds like You probably will be gluten-free for life, you are overseas... I would enjoy the food where you!

Good luck! 

[marren27]

Thank you for your response ironictruth. Now that would be funny if ended up a case study. :-) 

I appreciate your suggestions. My bone doctor ordered me off gluten after the test because I had/ve a stress fracture that was not healing. Unfortunately, I do not think I will be able to enjoy gluten food here, as I was accidently glutened yesterday and my lips have sores and my skin itches today. They may end up doing a genetic test, additional bloodwork, and skipping the scope--I am complying with whatever they tell me to do. 

 

[ironictruth]

1 hour ago, marren27 said:

Thank you for your response ironictruth. Now that would be funny if ended up a case study. :-) 

I appreciate your suggestions. My bone doctor ordered me off gluten after the test because I had/ve a stress fracture that was not healing. Unfortunately, I do not think I will be able to enjoy gluten food here, as I was accidently glutened yesterday and my lips have sores and my skin itches today. They may end up doing a genetic test, additional bloodwork, and skipping the scope--I am complying with whatever they tell me to do. 

 

That sounds like a good plan then. You do not want to feel any worse during your internship. 

Enjoy your time and feel better soon!

[Gemini]

You know, marren........there are no false positives with numbers that high.  False positives are quite rare anyway and have more to do with other autoimmune disease.  Yes, tTg can be elevated with thyroid disease but it generally would not be that high.  You have high results for the test that checks for reaction to the gluten you are eating (DGP) and VERY HIGH results for intestinal damage....although tTg numbers don't always correlate to degree of intestinal damage.  Also, thyroid meds have no impact on testing for Celiac Disease.  A couple of questions, if you don't mind........

Were you symptomatic for too much thyroid hormone?  If docs are just going by lab results, they may tell you it is too much when in reality, it is not.  if they are using TSH only for dosing, many labs have tightened up the ranges for TSH and they are lower than what was previously thought as normal range.  The old range of up to 5 is outdated and most reputable thyroid docs will treat if the TSH goes above 2.5.  Something to think about.

Having thyroid disease, along with numbers like those on testing results puts you in the very probable range for Celiac Disease. You also have bone issues, which go hand in hand with Celiac and Hyper-thyroid......but you are Hypo-thyroid.  It is really too bad the scope could not be done to make it easier to know but my experience was close to yours. I was diagnosed via blood work only because my numbers were very high on all the blood work....like yours.  I also have other AI diseases that are common to Celiac's and a double Celiac gene so no doubting it myself.  One of those other AI's is Hashi's thyroid disease.

I would either get the scope done or stay strictly gluten-free for life. I think after a while on the diet, you'll see big differences in your health so that is another way to prove it to yourself.....positive dietary response.  Good luck to you and enjoy your time overseas!

[marren27]

Gemini, thanks for your knowledgeable and informative response, especially your background similar to mine with the bloodwork.

Yikes--high intestinal damage would explain my low vitamin D, iron, bone density. . .

My TSH was below 1, and after cutting the dose by 1/4, I can focus better and don't feel hyper. That was my bone doctor who advised me to cut it, but she only tested TSH, so I am going to go back to my naturopath (ND), who prescribed it, when I return from my trip and have her retest me. The naturopath tested a lot of things TSH, T3, T4 (multiple ways?) and my T3 and T4 were low but not my TSH and that's how I was prescribed. I think my dose was initially too high, but my bone doctor wanted me to cut it by 1/2 and I tried that and could not function.

We have tons of AI one side of my family. Everyone has at least one. 

Thanks! I already notice I feel better. I'm used to people telling me it's all in my head so there is self-doubt--hopefully the genetic test will be the answer for me.

 

[Jmg]

Just a word on oats, unless they're certified gluten free they're very likely to be contaminated with actual gluten - they're often milled on the same machinery, grown in adjacent fields etc etc. 

Gluten free oats are available, but as above they can also generate a reaction in some. Best left until you're a few months gluten free and things have settled down and at that point hunt out the certified gluten free variety rather than the standard.

Best of luck to you

 

[marren27]

Thank you for the information, Jmg. With my move overseas I have not found gluten-free oats and have been eating regular oats, but with all of this response I am now replacing those with rice and buckwheat.

[marren27]

And any other replacement suggestions are appreciated! I'm looking through the coping forums for ideas. 

[Gemini]

8 hours ago, marren27 said:

Gemini, thanks for your knowledgeable and informative response, especially your background similar to mine with the bloodwork.

Yikes--high intestinal damage would explain my low vitamin D, iron, bone density. . .

My TSH was below 1, and after cutting the dose by 1/4, I can focus better and don't feel hyper. That was my bone doctor who advised me to cut it, but she only tested TSH, so I am going to go back to my naturopath (ND), who prescribed it, when I return from my trip and have her retest me. The naturopath tested a lot of things TSH, T3, T4 (multiple ways?) and my T3 and T4 were low but not my TSH and that's how I was prescribed. I think my dose was initially too high, but my bone doctor wanted me to cut it by 1/2 and I tried that and could not function.

We have tons of AI one side of my family. Everyone has at least one. 

Thanks! I already notice I feel better. I'm used to people telling me it's all in my head so there is self-doubt--hopefully the genetic test will be the answer for me.

 

You know, marren....you are very intelligent!  Right away, you connected the high tTg and intestinal damage to your low Vit. D, iron and bone density.  These are the clues to help you figure out your status on Celiac.....clues that most doctors blow off unless they really think you have Celiac.

Most mainstream docs will freak with TSH levels below 1.  I suppressed mine for quite awhile to help bring my thyroid antibody levels down because they too were sky high.  People function well with it being between 1 and 2 BUT you absolutely have to look at all those other numbers you mentioned in your post. I dose on what my T3 and T4 numbers are.  I still have them test TSH but the most important numbers are really the actual thyroid antibody numbers. What a concept, huh?    You are doing the right thing by dosing on symptoms and isn't it amazing what a 1/4 grain of thyroid hormone can do?  I have gone hyper myself by just increasing it by that tiny amount.  Powerful stuff!

I hope your family members get tested for Celiac because my family sounds the same.  We are loaded with AI disease too but most of them have been very resistant to being tested.  My niece, who I told 12 years ago that I thought she had it also, would not believe me.  She ended up being diagnosed a year ago when her symptoms became severe.

I am glad you have a doctor who is well versed in thyroid disease.  I do not have a bone doctor, even though I have osteoporosis in my spine from Celiac.  They are obnoxious when you get to my age about thyroid disease.  I have stopped the progression of it by doing weight bearing exercises at the gym.  You will most likely get your bones back as I think you are a lot younger than I am.  Once you heal your gut, you'll be absorbing again!  Best of luck to you and keep us updated!

[marren27]

Thanks Gemini--you're right, I told a doctor a few years ago I had issues sometimes with wheat and they blew it off and told me that I was eating too much fiber. 

Thanks for the advice, I will get those tested ASAP when I get home. Yes thyroid medication is a miracle but only in the correct dose!!

Wow, your poor niece. Surprisingly, I'm the (tentatively) first diagnosed with Celiac on either side though my great-grandfather had a "wheat allergy" his whole life.

I'm sorry about your osteoporosis, but that's great you are taking care of it with exercise. You guessed right and I still have a couple years to get them back and am glad I found this now.

Thanks for the support, I will keep everyone updated. :-)

[marren27]

On 4/5/2017 at 0:22 AM, marren27 said:

Gemini, thanks for your knowledgeable and informative response, especially your background similar to mine with the bloodwork.

Yikes--high intestinal damage would explain my low vitamin D, iron, bone density. . .

My TSH was below 1, and after cutting the dose by 1/4, I can focus better and don't feel hyper. That was my bone doctor who advised me to cut it, but she only tested TSH, so I am going to go back to my naturopath (ND), who prescribed it, when I return from my trip and have her retest me. The naturopath tested a lot of things TSH, T3, T4 (multiple ways?) and my T3 and T4 were low but not my TSH and that's how I was prescribed. I think my dose was initially too high, but my bone doctor wanted me to cut it by 1/2 and I tried that and could not function.

We have tons of AI one side of my family. Everyone has at least one. 

Thanks! I already notice I feel better. I'm used to people telling me it's all in my head so there is self-doubt--hopefully the genetic test will be the answer for me.

 

Update: Gemini, you were right! I went to the GI doctor today. I'm still getting scoped to check out the damage (but I won't need to go back on gluten--that IS NOT happening!), but she said there's nothing else that can cause those numbers. 

[marren27]

Update: for most accurate results, I am eating one piece of white wheat bread a day and am hating the symptoms. Less than two weeks until the endoscopy so I'm hanging in there.

[Jmg]

3 hours ago, marren27 said:

Update: for most accurate results, I am eating one piece of white wheat bread a day and am hating the symptoms. Less than two weeks until the endoscopy so I'm hanging in there.

I and many others here have been there and sympathise! Keep on keepin' on, it won't be long now before you can start feeling better. In the meantime, if there's a cheesecake, pastry etc that you want to say goodbye to, now's the time...

[Gemini]

On 5/19/2017 at 7:36 PM, marren27 said:

Update: Gemini, you were right! I went to the GI doctor today. I'm still getting scoped to check out the damage (but I won't need to go back on gluten--that IS NOT happening!), but she said there's nothing else that can cause those numbers. 

I am happy you are getting the help you need and that you seem to have found a GI doctor who knows what they are doing.  Hang in there.......I know how tough it is to eat gluten when it makes you feel horrible. Best of luck with the testing!

[Victoria1234]

Eat a chocolate donut for me!

i bet you are happy it's so close and you can finally have an answer one way or the other.

[marren27]

Thanks everyone. Got the endoscopy today showing mild villous blunting. Biopsy results in 5-7 days.

[ravenwoodglass]

19 minutes ago, marren27 said:

Thanks everyone. Got the endoscopy today showing mild villous blunting. Biopsy results in 5-7 days.

With your high blood results and villi blunting that could be seen even before the biopsies have been read you now know you are part of the club that no one wants to join. At least now you can go back to being gluten free and start healing. I hope you heal quickly and it must be a relief to now know what is going on.

[marren27]

Thanks, I'm very glad to go back to gluten-free. I was lucky I did not need to eat it very long to prep. And yeah... I don't know why some people just choose to go gluten-free! I would never do it if it weren't for having Celiac.