• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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
0
Si & Ash's Mom

My Local Labs Only Run Ttg Iga - What Do I Do Now?

Rate this topic

Recommended Posts

So I asked my doctor for celiac blood tests a few months ago. He sent me for total IgA (1.32 g/L {ref 0.70-4.00}) and the tTG IgA (<1.0 U/mL {ref <7.0}). My total IgA is normal and my tTG IgA is a big fat negative. I then found out that they only run the EMA if there is an elevated tTG IgA so they didn't run that on me. The lab doesn't even do the gliadin tests or the DGP test.

I am almost certain I have an issue with gluten (life long GI issues which previous doc diagnosed as IBS, iron deficiency, depression, fatigue...) and would love to explore all angles so I can care for my kids' health properly. I recently was reading my full bloodwork results and realized that my TSH is high (3.19 mU/L). It wasn't flagged as the labs have a range of 0.20-4.00 but I believe that is high for me. I am going back to my doc next week to have my free T3's, free T4's and antibodies checked. I'm thinking it may be Hashimotos but we'll see. 

I really feel more exploration into celiac is warranted but am not sure how to proceed now. Is there another way to have the gliadin and DGP blood tests run since my local labs won't do it (I'm in Alberta, Canada)? Should I just push for an endoscopy? I appreciate your thoughts! Thanks!

 

ETA: I found this presentation that my lab put out about lab testing for celiac. I find it interesting that the only reason they give for not having the DGP test is that it's expensive :facepalm: 

http://dynalifedx.com/Portals/0/pdf/Symposium/2013/7%20-%20Celiac%20Disease%202013_Karina%20Capote.pdf

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Yeah... I'm in Alberta too and couldn't get any more testing either. You might be able to find a mail order lab and have a local lab draw the blood and send it off East or to the States, but I bet it costs a pretty penny.

 

I strongly suspect celiac disease in two of my three boys. They too had negative tTG IgA tests so with no other testing options, I just made them gluten-free. I'm a celiac so I wouldn't be surprised if they are too, but at the very least they are NCGI (non-celiac gluten intolerant) which can result in a host of symptoms and complications if ignored - pretty much the same as celiac disease but minus the villi atrophy.

 

I opted not to do the endoscopy for my kids because I had already determined that they had a gluten intolerance and needed to be gluten-free, so I didn't feel an endoscopy was needed. But that's just my personal view of our own situation. If you feel strongly that an endoscopy should be done, then it should be done. Just be aware that if it is negative, you could still have NCGI as it is 6-10 times more common that celiac disease is. A gluten-free diet of about 6 months is really the only way to diagnose that.

 

Going gluten-free could help your thyroid too. Some find their body meets their thyroid hormone needs better after going gluten-free.  You never know.  

 

Based on my own experiences, you may need to find an "alternative" doctor or naturopath to address your thyroid needs if the lab results continue to be in the normal range. In Calgary, our TSH range is still 0.2-6.0 and I had to fight to get more meds and finally switched doctors.  I hope your doctor is open minded.  Good luck!

Share this post


Link to post
Share on other sites

Yeah... I'm in Alberta too and couldn't get any more testing either. You might be able to find a mail order lab and have a local lab draw the blood and send it off East or to the States, but I bet it costs a pretty penny.

 

I strongly suspect celiac disease in two of my three boys. They too had negative tTG IgA tests so with no other testing options, I just made them gluten-free. I'm a celiac so I wouldn't be surprised if they are too, but at the very least they are NCGI (non-celiac gluten intolerant) which can result in a host of symptoms and complications if ignored - pretty much the same as celiac disease but minus the villi atrophy.

 

I opted not to do the endoscopy for my kids because I had already determined that they had a gluten intolerance and needed to be gluten-free, so I didn't feel an endoscopy was needed. But that's just my personal view of our own situation. If you feel strongly that an endoscopy should be done, then it should be done. Just be aware that if it is negative, you could still have NCGI as it is 6-10 times more common that celiac disease is. A gluten-free diet of about 6 months is really the only way to diagnose that.

 

Going gluten-free could help your thyroid too. Some find their body meets their thyroid hormone needs better after going gluten-free.  You never know.  

 

Based on my own experiences, you may need to find an "alternative" doctor or naturopath to address your thyroid needs if the lab results continue to be in the normal range. In Calgary, our TSH range is still 0.2-6.0 and I had to fight to get more meds and finally switched doctors.  I hope your doctor is open minded.  Good luck!

Thanks nvsmom. You've given me great feedback in other questions I've posted as well. Yeah, I would be fine just cutting out gluten from my diet completely but the fact that a diagnosis may benefit my kids keeps me from just accepting that. I just ordered the genesure genetic test from glutenpro and even though it wasn't cheap it will maybe help me figure out if I need to push for more testing or if I just need to start the gluten-free diet in earnest (I've done a week or two before but always stopped as I thought I may want more testing). I know the gene test won't tell me if I'm celiac but it will let me know if it's even a possibility. And thanks for the tip on finding a naturopath for thyroid issues. We do have a really good naturopath clinic here so I may end up seeing them if my doctor doesn't think there's any issues. Wow, a range of up to 6.0 is just crazy! There are probably so many people suffering but the lab still says they're fine. So sad! 

Share this post


Link to post
Share on other sites

Good luck with the gensure test.  :)

 

What are you thinking for more testing at this time? I'm not sure if the DGP tests are even available in Alberta. At my last doctor appointment, I discovered that my doctor had never even heard of the DGP tests.   :rolleyes: I know labs can be sent away, because I know one man who had his blood work sent to the Mayo clinic - but this was a different health issue where blood test monitoring is required, and not just helpful like in celiac disease.

 

Naturopaths are often more open to giving T3 than regular docs are. I have actually found a protocol for Calgary (might be Alberta) that says to only give synthetic T4 and that T3 is not needed; it also strongly advises against natural desiccated thyroid... Truly a shame as not everybody feels well on exactly the same meds; it allows for no variation.

 

Sometimes our Alberta Health Care is a blessing, and other times I REALLY wish we could have more control of our health.  :unsure:

Share this post


Link to post
Share on other sites

Good luck with the gensure test.   :)

 

What are you thinking for more testing at this time? I'm not sure if the DGP tests are even available in Alberta. At my last doctor appointment, I discovered that my doctor had never even heard of the DGP tests.   :rolleyes: I know labs can be sent away, because I know one man who had his blood work sent to the Mayo clinic - but this was a different health issue where blood test monitoring is required, and not just helpful like in celiac disease.

 

Naturopaths are often more open to giving T3 than regular docs are. I have actually found a protocol for Calgary (might be Alberta) that says to only give synthetic T4 and that T3 is not needed; it also strongly advises against natural desiccated thyroid... Truly a shame as not everybody feels well on exactly the same meds; it allows for no variation.

 

Sometimes our Alberta Health Care is a blessing, and other times I REALLY wish we could have more control of our health.  :unsure:

I actually have no idea what testing to do. There really isn't much else here other than the biopsy... my doctor suggested a colonoscopy and I thought that he may send me for an endoscopy as well but I'm not sure he would agree to that - and I'm not sure if it's necessary since the tTG IgA was completely negative.

I know the naturopath here does IgG testing so I could pay for the IgG gliadin test. I've heard conflicting info on its usefulness though. Some seem to think it indicates gluten sensitivity and others think it has no meaning at all so I'm not sure it's worth paying for. Thoughts on that? I guess I will probably see the naturopath for thyroid issues anyway so I can ask her then. I really don't understand why some medical professionals are against T3 and natural thyroid. Does it really make sense medically to only treat with T4 meds? It doesn't make rational sense to me  :huh: Thanks again for your input!

Share this post


Link to post
Share on other sites
Ads by Google:


The gliadin tests (AGA) don't test for attempted villi damage by autoantibodies like the other tests do, it's thought to work for NGI too but that is not widely accepted yet.  It DOES have a fairly low sensitivity (ability to detect positives) so it's best not to solely rely on it for a diagnosis.

 

I can't remember if I've pointed out this paper (by world gastroenterology organisation) to you yet. On page 10-12 they go through the tests andpoint out how sensitive and specific to celiac disease each test is. All tests discussed are blood tests; fecal testing can be done but they are not generally accepted in the medical community and tend to have a high (false) positive rate.

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

I don't understand why t3 is down upon either!  I "get" that T4 converts to T3 in parts of our body that need it, but not everyone converts well, or accepts t4 to be converted.... Nope. Not rational. I totally agree that a T3 option should be given to those who need it (and not all do - I just know that i did).

 

Let us know how it goes with the naturopath.

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
      108,384
    • Total Posts
      940,978
  • Member Statistics

    • Total Members
      66,393
    • Most Online
      3,093

    Newest Member
    geni7476
    Joined
  • Popular Now

  • Topics

  • Posts

    • These days there are tasty equivalents for most foods. So you're just changing brands. Here's my list of gluten free equivalents to get you started: If you're currently on a meat, potato, and veggies diet then relax because this is gonna be easy. If not you might want to switch to a meat, veggies, and potatoes diet at least for a while.   Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time. Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier. Bread: Canyon bakehouse without question is the most realistic tasting bread.
        Schar comes in a close second.
          Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
          Canyon bakehouse white bread makes fantastic toast. It has a very slight
                       sweet taste to it. My friend says it tastes like normal bread. The
                       only difference to me is the sweetness.
          Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
          Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need to be toasted.
          Schar baguettes are fantastic.
          Katz makes an English muffin that, after toasted, reminds me of a real one provided it has stuff on it like butter. I think that's the brand.
          Etalia has a great boule if you prefer artisan bread. (Colorado) Pizza crust:
          Shar makes a good thick and chewy crust.
          Udis makes a good thin and crispy crust.
          Etalia makes a great New York crust. (Colorado) Pasta:
          Barilla makes the best pasta. Tastes the same as normal. Spaghetti cooks the best.
          RP has a frozen pasta that I'm going to try next. Flour:
          Pamelas all-purpose flour is great for making gravy and batter for fried foods. Cereal:
          Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops. Cookies:
          Kinnikinnik makes a decent Oreo equivalent.
          Kinnikinnik makes a good nilla wafer
          Mi Del makes a great ginger snap.
          Goodie Girl mint slims - fantastic girl scout mint cookie equivalent Cake:
          Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time exactly right. It is a very small window of time. Too long and it's too dry. Frozen meals:
          Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna. Restaurants (not from personal experience, just from research)
          Chinese – PF Changs. Employees are supposedly trained in gluten free.
          Burgers – In N Out. The only thing here that is not gluten free are the
                      buns so it is very easy for them to do gluten free. They are
                      also trained in it. They are only out west. Road Trip!
          Outback steakhouse. Employees are supposedly trained in gluten free. How
                      good they are depends on where you live.   If you are willing to cook from scratch it's fairly easy to make a good gluten free equivalent to your favorite foods.    
    • I do light weights at the gym. Will increase weight when I get better.  
    • I got a personal trainer and go to the gym twice a week. It's nice to think about other things. And I don't go crazy at the gym. Light workout so I stop breaking things all the time. I haven't torn a tendon in months.  
    • I hear you on this, I live alone, isolated by allergies, and this disease often, spending the evenings alone wishing someone would come by and join me for tea, coffee, or hell even board games sound great at times.  I find myself trying to help others on these boards with my knowledge, feel useful and needed. I drink flavored teas, from republic of tea, and coffee flavored like desserts from Christopher bean coffee to "treat myself" and I try to sometimes get online like I used to as a kid and play video games (nerve damage makes games frustrating , hard, and I can not do multiplayer anymore) Best thing to do is distract yourself, workout, clean the house is always mentally rewarding, hobbies (if you can afford them). I also find peddling on a stationary bike while reading or watching a show to help burn off energy/stress while distracting my mind.
    • Nuts are high in protein so if you can eat them, then go for it. You may not be able to tolerate whole nuts. I found I can't eat almonds but I am fine with almond meal. Dried beans are great sources of protein as well. How about making re-fried beans from dried pinto beans?  I get my almond flour from Barney Butter since I have an intolerance to peanuts. Barney Butter products are peanut free.
  • Upcoming Events