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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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cao204

Is This Likely Celiac Disease?

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Im a 32 year old male with hashimotos disease/hypothyroidism.(antibodies for that were in the 2000-3000 range last time I checked a few years ago).As long as I can remember I have had stomach issues, but up until now starting to think I have celiac disease too. One thing that makes me wonder is why am i gonna be on almost 300mcg of levrothroxine soon(seems weird for my age). Was taking 5 grain armour split in half plus 25mcg levrothroxine daily before switching over to levoxyl. I have always had constant gas/painful stomach bloating/(diahrrea maybe once a week or so)when eating meat/eggs/and possibly breads. Have to take probiotics and gas medicine each time I eat something.

 

The thing is I was reading the blood tests aren't really accurate for getting a diagnosis of celiacs disease.I live in a small town aswell so not sure about a biopsy and if that's anymore better or if they can do it.I have just been stuck in a major depression with panic attacks anxiety all my life.The brain fog is horrible as well.Im lucky if I can remember things that happened a few mins ago.Besides that rant, just wondering if this sounds like celiac disease to anyone? Can you not have major symptoms and still have it? Whats the likelihood of getting celiacs disease when you get hashimotos disease?I really don't know what to do.

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Sounds like you could have celiac disease. Here is a link to the University of Chicago's website regarding testing:

http://www.cureceliacdisease.org/medical-professionals/screening

I have Hashi's with super high antibodies too! Having multiple autoimmune disorders, like celiac disease. And Hashi's, is common. I only had anemia as my main symptom for celiac disease.

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Having the right blood tests done are very accurate.  Even if you live in a small town, there has to be a bigger town you could go to for a complete work-up, blood tests and endoscope if necessary.  With your symptoms, any good doctor will order tests.

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The tests are fairly accurate with a sensitivity of 70-100% (the amount of celiacs each test catches), and the specificty is about the same.  It is important to have a few tests run (or all) to give the disease a better chance of being caught. The tests to get are:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG (older tests)
  • endoscopic biopsy (catches about 4 in 5 celiacs)

Keep eating gluten or the tests will not be accurate.

 

The last stats I saw about Hashi's and celiac disease (that I hope I am remembering correctly) said that 10-15% of celiacs have Hashi's (my guess is higher) and that about 6% of Hashi's patients have celiac disease. If you have Hashi's you are more likely to get celiac disease than the average person.

 

I too have thyroiditis (my doctor won't call it Hashi's beause my TPO Ab is not high but my thyroid have nodules and barely works... go figure LOL) and celiac disease. I find the symptoms are very similar but overall I feel better gluten-free.  It's good you are getting tested.

 

Good luck.

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Thanks for all the help.I had wrote a longer post but I accidently hit the back key so i'll try again.I know my doctor would order those tests for me if I ask.Just worried if its covered by my blue cross insuarance or not. Had an h.pylori test though and it was covered so maybe it will be fine.There is a general surgeon here in my area so im thinking maybe he can do an endoscopy here as well.(just figured you needed a specialist for it) I will check out the links and read up more about it as well.If I can get the tests done next week I will post my results here.I appreciate it.

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The tests should be covered.

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As far as BCBS covering the blood tests, there should be no issue with it at all. But depending on what policy you have exactly, they may want a "valid reason" (basically your doctor telling them why they feel it's necessary) for an endoscopy with biopsy.

Make sure when you talk to your doctor about symptoms you tell them everything that's going on. There are over 300 symptoms associated with celiac (that list can also be found on the University of Chicago website).

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HI CAO,

 

You should ask the doctor to do 6 to 8 biopsy samples during the endoscopy.   That's the recommendation from some medical board altho I forget which one.  One sample is not enough, and many doctors will only do one or two unless they are told to do more.  Can you look up celiac support groups in your area?  They may have ideas for doctors who are familiar with celiac disease.  It's best to choose a doctor who is familiar with diagnosing celiac and treating it as many are not up to speed on the current guidelines.  There is a doctors sub-section on this forum which might have someone listed for your area also.  Try searching that too.

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I wrote my doctor and asked about the list of tests mentioned in this post.She said she would get back to me next week with whats available from the lab.(Hope i can test for everything)If i do get tested it will probably be next week sometime.I have been eating pretty unhealthy for awhile so if there is anything my hope its pretty obvious i have it.My doctor is a ARNP but i can get recommendations im sure for a biospy.(Just a general surgeon in my area)Will start researching people though on this forum and the web that can do it if not this surgeon.

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Good luck.  I hope you don't have to wait too long.

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Got the blood test on the 1st for my thyroid and the celiac test.Thyroid test came back on monday with a TSH of 0.42,which is a lot better than i thought it was gonna be.haha.Might actually have to drop down too 188mcg which is a good sign for that.No word yet on the celiac test as it had to be sent to a medical lab somewhere else to run it.I post my results eventually hopefully this week or the next week.I have no idea how long it takes to run it.I asked to get tested for all the things 'nvsmom' mentioned. They told me they would run a full panel i guess for it.

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Good luck. Glad it is good so far.

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so i got the test results back and doesnt seem like i have it:

 

Anti tTransglut, IgA (5)        range 0 - 19 U

 

Anti Gliadin,   IgG (<1)        range 0 - 19 U

 

I requested all those tests but those were the only 2 i got.Maybe if i had got the rest of the tests it might of showed more, but i dont know.

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The tTG IgA is the most common test. It looks negative but 1 in 20 celiacs are low in IgA and that causes false negative tests.  You should see if you can get the total serum IgA done, or even look back through past labs to see if it was done. Even if you IgA levels are normal, the tTG iGA can miss up to 25% of celiacs.

 

The AGA IgG is not a great test.  If you look on page 12 of this report by the World Gastroenterology Organisation, you can see that the sensitivity of the AGA IgG can be as low as 17%!  That means it can miss (worst case scenario) up to 83% of all celiacs.  The DGP IgG (deaminated gliadin peptides) is a much better, but similar test.

 

If you can get more tests (even the endoscopic biopsy), I would do it. If not, you should consider trying the gluten-free for 6 months.  At this point you suspect celiac disease or non-celiac gluten sensitivity (NCGS), and despite the two negative tests, it could still be either one of those causing your problems.  If you are sure testing is done, go gluten-free and keep a food and symptoms journal. Symptoms can change so slowly that you barely notice so keeping a food journal can help.  There is also the added benefit that if another food is causing your problems, it may help you identify the problem.

 

Hang in there.

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Im not sure if i can get my doctor to do the test over again as much as i wanted her too.The lab that did testing had these tests that could of been run:

 

Anti Tissue Transglutaminase, IgA     
Anti tTransglutaminase, IgG         
Anti Endomysial, IgA (by IFA)          
Anti Gliadin, IgA     
Celiac Serology Reflex Panel     
Anti Deamidated Gliadin, IgG

 

Sucks that she wouldnt atleast run all of those even when i requested it.I was gonna start gluten free soon after those test results cause of my hashimotos' to try to get those levels down as well.I will check out that report too.Unfortunetly i just dont have the money right now to get tested outside of my doctor from a private company.Thanks for everyones help with all of this.

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so i got the test results back and doesnt seem like i have it:

 

Anti tTransglut, IgA (5)        range 0 - 19 U

 

Anti Gliadin,   IgG (<1)        range 0 - 19 U

 

I requested all those tests but those were the only 2 i got.Maybe if i had got the rest of the tests it might of showed more, but i dont know.

 

I would double check that your total IgA and IgG levels are normal before accepting that you do not have Celiac but if those are normal, then it's likely that you do not.

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I think part of the problem for me is asking my doctor to retest me again.I have a feeling im not gonna get far with getting the other tests i need unfortunetly.Is there a company that you could pay for those tests without it being really expensive?

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I think part of the problem for me is asking my doctor to retest me again.I have a feeling im not gonna get far with getting the other tests i need unfortunetly.Is there a company that you could pay for those tests without it being really expensive?

 

yes, you can see if you have a lab testing center near you and call them.  From what I've seen it's in the $150 range depending on the tests.  Check with your insurance to find one in network to keep your costs down.  The other option is diving to a better clinic somewhere and getting a full physical and testing done.

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Never really thought of that but from just searching again, i found a gastroenterologist and or different doctor i could possibly goto.Its all the same clinic, but just a different area.I hope atleast now they will be able to run a complete test.

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I went to a different clinic today and got i believe 3-4 of the new tests done.The doctor straight off told me that if these 2 tests (Anti tTransglut, IgA) (Anti Gliadin) show a positive reaction,They would of then done the rest of the other tests that i just got.She was telling me that those are the 'gold standard' for testing for Celiac disease.I was explaining to her different and that it was very important for me to get these done so i know for sure if i have it or dont have it.She ended up calling the lab and getting a few lab codes but couldnt find some so she entered the name manually.Hoping theres no problems with the tests.I believe the tests i got for sure were these:

 

(Anti Endomysial, IgA) (Anti Deamidated Gliadin, IgG)

 

One of these were also done but not sure:

 

(Anti Tissue Transglutaminase, IgA) (Anti tTransglutaminase, IgG)

 

Should have the results back in a week.

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I got only one of the test's back and it was the 'Anti -Endomysial, IGA which came back negative.Not sure why the other tests never came back, but i think im done with testing.Maybe i have just the gluten sensitivity.I have been eating gluten free ever since i got tested this last time so im gonna just try to stick with it and see how i feel after awhile.

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