• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Would You Do?
0

5 posts in this topic

Hi everyone, I've been lurking while waiting to hear about the results of my 1...yes you read that right, 1 test for celiac. It was the anti-endomysial test with reflex.

Finally got the results from the doctor. Normal, of course; rated 5 with lab ranges of 0 to 19.

Also, had my thyroid checked again with this new doc from the endocrinology dept (she's really a NP). She advised me that the TSH - which is what my PCP had ordered - is not a reliable indicator when someone is taking Armour thyroid (which I am, of course).

Obviously - and I say this because of how crappy I feel - my free T4 was low (0.7 with lab ranges of (0.8 to 1.7), so she upped my dosage from 120mcg to 180mcg. I'll start this new dosage tomorrow.

Background: I have had Hashimoto's thyroiditis since a teenager (doc noticed a goiter), had my gallbladder out in 1997, 1 month after having my son (who by the way is autistic), lost both parents while still young - mom was 47 when she died from stroke, dad was 59 when he suffered a heart attack (lifelong sufferer of asthma and lost a ton of weight before he died), my sister has Ige food allergies and was diagnosed last year with Hashimoto's, a daughter with ADD, another son with a learning disability (school casts as autistic, but he is much more capable than my older son - I think because I refused to allow him to get the MMR).

Nobody in my extended family to my knowledge has celiac - or any autoimmune diseases that I know of, but of course we're not really all that close...

Symptoms I've been having: diarrhea/constipation - swings from one to the other - brain fog, inability to focus and concentrate for any length of time, lots of very smelly gas, aching joints, muscle weakness and the new joy in my life - a very itchy rash which I developed after my initial doctor visit back in December, 2012.

Can't think of anything else at this moment, but anyway, if it were illegal to be celiac, I would probably be put away for life due to circumstantial evidence! ;-)

Question is: I plan to try the GFD for at least 3 months' time to see if I begin to feel better. What would you do?

Thanks everyone - this is a very supportive community.

0

Share this post


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


Hi everyone, I've been lurking while waiting to hear about the results of my 1...yes you read that right, 1 test for celiac. It was the anti-endomysial test with reflex.

Finally got the results from the doctor. Normal, of course; rated 5 with lab ranges of 0 to 19.

Also, had my thyroid checked again with this new doc from the endocrinology dept (she's really a NP). She advised me that the TSH - which is what my PCP had ordered - is not a reliable indicator when someone is taking Armour thyroid (which I am, of course).

Obviously - and I say this because of how crappy I feel - my free T4 was low (0.7 with lab ranges of (0.8 to 1.7), so she upped my dosage from 120mcg to 180mcg. I'll start this new dosage tomorrow.

Background: I have had Hashimoto's thyroiditis since a teenager (doc noticed a goiter), had my gallbladder out in 1997, 1 month after having my son (who by the way is autistic), lost both parents while still young - mom was 47 when she died from stroke, dad was 59 when he suffered a heart attack (lifelong sufferer of asthma and lost a ton of weight before he died), my sister has Ige food allergies and was diagnosed last year with Hashimoto's, a daughter with ADD, another son with a learning disability (school casts as autistic, but he is much more capable than my older son - I think because I refused to allow him to get the MMR).

Nobody in my extended family to my knowledge has celiac - or any autoimmune diseases that I know of, but of course we're not really all that close...

Symptoms I've been having: diarrhea/constipation - swings from one to the other - brain fog, inability to focus and concentrate for any length of time, lots of very smelly gas, aching joints, muscle weakness and the new joy in my life - a very itchy rash which I developed after my initial doctor visit back in December, 2012.

Can't think of anything else at this moment, but anyway, if it were illegal to be celiac, I would probably be put away for life due to circumstantial evidence! ;-)

Question is: I plan to try the GFD for at least 3 months' time to see if I begin to feel better. What would you do?

Thanks everyone - this is a very supportive community.

I'm sure you will get responses from some who are much more versed in this disease than I, but I would hedge a bet that they will recommend you request a full celiac panel be run. I have learned SO MUCH from this forum (and other sites), and one of the things I've read over and over again is that celiac disease and Hashimoto's are very connected. Your symptoms alone would be reason enough for me to push for further testing. Your rash sounds like it could possibly be dermatitis herpetiformis. If you haven't read the posts on that topic, you really should. There are even lots of pictures for you to compare. You could have a skin biopsy done to test for DH, but be sure to read on that so you know where the biopsy is supposed to be taken. If you get a positive result for DH, it's also a positive result for celiac.

Good luck! Keep us updated if you decide on further testing.

0

Share this post


Link to post
Share on other sites

Your sister's and your Hashimoto's are autoimmune and as the pp notes, often closely associated with celiac disease.

Now is your one good chance for testing; you may never get another because you may not be able to tolerate gluten if you once stop it. Is there any chance that you could spring for the DGP yourself, if your insurance will not cover anything else? And they really do need to cover the Total Serum IgA if that was not done, because without that test you do not know if the tTG result was valid.

0

Share this post


Link to post
Share on other sites

I'm sorry you've been feeling so poorly.You story is similar to mine. i had many of the same symptoms, deveolped hypothyroidism in my early 20's (wasn't recognized though), and my oldest son has Aspergers (which supposedly no longer exists :rolleyes: ).

Are you sure was the anti-endomysial test that was done? I ask because (and I am far from an expert) I thought the EMA IgA test was done as a titre. Mine was anyway and it came up as 1:40; it just has a cut-off titre.

If you can get more testing, the most common ones are:

  • Total serum IgA
  • ttg IgA and ttg IgG
  • EMA IgA
  • DGP IgA and DGP Igg

Like Mushroom said, if you are going to do more testing, do it as soon as possible while you still have gluten in your system. If you are gluten-free, all tests will eventually show up as negative (usually).

I was wondering if your boys are gluten-free and/or casein free? My boys all tested negative for celiac but they eat gluten-free now anyways, and I've noticed a real improvement in my oldest son. His behaviour is much more controlled, he can focus on his school work better (we homeschool) and he gets upset sooo much less now. He has less head aches and his stomach aches are basically gone... You might want to consider a gluten-free/cf trial of 6 months and see if it helps your kids, and if you do test positive, you should have them checked because it is a genetic disease.

Have you had your Free T3 checked too? I know that TSH is VERY low when on Armour, but I believe FT4 is often a bit low too because your T3 levels are higher (and that is the active hormone). From what I know, FT4 and FT3 should be in the 50-75% range of your lab's normal reference range.... But I'm not an expert though, just another hashi patient.

Good luck with it all. I hope you are well soon.

0

Share this post


Link to post
Share on other sites

if it were illegal to be celiac, I would probably be put away for life due to circumstantial evidence! ;-)

I can't add to the good advice above, but I love this statement! (Especially since I am a crime reporter lol).

0

Share this post


Link to post
Share on other sites
Ads by Google:


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
      107,375
    • Total Posts
      935,744
  • Member Statistics

    • Total Members
      65,055
    • Most Online
      3,093

    Newest Member
    Carol C
    Joined
  • Popular Now

  • Topics

  • Posts

    • The fullness of the Eucharist is found in the wine alone. However, glutenfreewatchdog did an article on the low gluten hosts recently. She tested a single host from the Benedictine sisters and found it to contain 0.0017 mg of gluten. Compare that to the 0.57mg found in a piece of gluten free bread. The amount of gluten you are exposed to is negligible if you take a low gluten host Here's a good article to read.... http://www.catholicnewsagency.com/amp/news/gluten-and-communion-whats-a-celiac-to-do-72220/
    • It's not the Teflon that is the problem. It is the tiny amounts of gluten that are hidden in the cracks of previously used cookware. Personally, (and I have had this confirmed by the UCLA celiac center), it is not necessary to purchase new cook ware when going gluten free. Once you have cleaned the cookware well and cooked on it a couple of times with gluten free food, all of the gluten will be gone. What IS necessary is to not continue to cook gluten containing items in those pots and pans. Now that you have your new pots and pans (and hopefully a gluten-free colander and a toaster), label them all gluten-free or not). Don't cook any gluten containing foods in your new pots and pans and you should be good to go.
    • Short answer to this:  Has anyone else been through the denial phase and emotional upset upon realizing the life changes that have to happen just to feel better when eating? All of us!!!!!! It's mourning & it's normal. Breaking down in the grocery store & sobbing? Yep. Normal & I think we've all done it at least once if not multiple times. I would love to say more but dinner is calling me to go make it so I have to run for now. HUGS!
    • I found out roughly 3 -4 months ago by accident that I am gluten sensitive.  One day I woke up and had joint pain in just about every joint on my left side. ie, elbow, wrist, knuckles, hip, knee, ankle and feet.  I was already having issues with intense foot pain that I mistook for plantar fasciitis.  Once I googled the symptoms, and realized ALL of several other things were happening at the same time as a result of gluten as well, I knew the answer.  I had been bloating in my belly for decades, and also having migraines for years,  but as of this year, I was looking VERY pregnant after each gluten episode. This was highly upsetting.   I am 52, and fairly active otherwise.  I had Migraines, depression, anxiety and now joint pain and peripheral neuropathy.  I'm on anxiety meds, and have hypothyroidism and diabetes 2.   Getting to the bottom of the problems with my symptoms finally, has been exhilarating and exhausting at the same time.  I cannot test for Celiac because my insurance won't pay for this since I am not anemic and have no family history of Celiac.  Since I have been eating gluten-free, I have been feeling better, besides the mistakes that produce symptoms within 30 min-an hour. When I make a mistake, my symptoms come on faster and faster, and also more intense.  For example, I ate at a restaurant thinking I was okay, and by the time I got home and exited the vehicle I looked 7 months Prego, and my feet felt like I was walking on razor blades. The last week or two has been the best for not making mistakes, and finally I can eat without feeling horrible. Here's the thing:  I still can't wrap my head around this!  I comb through the forum for answers and have learned so much!  I have an extremely supportive boyfriend.  I just am in so much denial about this.  It's emotional for me and some days I just can't handle it.  I know many people with full blown Celiac's disease have it way worse than I do, I just can't deal with this very easily.  Has anyone else been through the denial phase and emotional upset upon realizing the life changes that have to happen just to feel better when eating?  What did you do about it?
    • The basic idea is that you don't want to use something that might have gluten in/on it.  Pots and pans are easy to wash and get clean - a colander is not - all those little holes full of pasta goo.  A toaster with crumbs.  
  • Upcoming Events