Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

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:

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

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
      103,636
    • Total Posts
      918,421
  • Topics

  • Posts

    • Celiac Night Vision
      Scotomas returned for the 7th year on the 24th February despite liver pâté and have varied since with 3 brief gaps. I have always had migraine, latterly occurring more than once a month, usually of basilar or retinal type with aura (but no headache) lasting less than 5 minutes. A recent bout looked like a TIA and led to a CT scan which revealed clear major vessels but old cerebellar infarcts, so maybe migraine accounts for poor memory too. The scotomas are very different from migraine eye symptoms - stationary, irregular in shape and lasting hours. I think food is excluded as the cause but seasonality, gaps, variation with wind direction and rain mean that pollen is still a possibility. Scott Adams did a marvellous thing founding this site so celiacs could enlighten each other. Please post if you have anything like these scotomas!
    • healthy bread recipe?
      Eat what you eat at lunch or dinner.  I am happy with a fried hamburger patty, fish, or chicken (I know it needs to be fresh or frozen for the histamine diet).  Yes, I eat veggies for breakfast!   Wanted to add that I was glutened in July (GI ordered follow-up antibodies testing and it was high)  and it took me 3 months to recover.  Picked up a histamine intolerance and became lactose intolerant again.  Luckily, when I healed, the histamine thing went away (or  Diminished ) and the lactose intolerance resolved.    I was getting hives, rashes and itching (not DH), vomiting, etc.  So, her intolerances may be just temorary!  
    • Could this be celiac or is it really just IBS?
      Are you sure you had the complete celiac panel?  Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)     -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)   Here is more information from a reputable site (and not just info from a crazy cyclist on the Internet!):   http://www.cureceliacdisease.org/screening/   IBS, in my opinion, means "I Be Stumped!"  It is just a cop out!  So is the "stressed" thing.     I also had my GB out too.   It was a non-functioning (0% per HIDA scan), no stones, and rotting.     You seem to have many celiac disease symptoms.  Verify (obtain copies of your lab tests) to see if you got the complete panel. You might just have had the TTG IGA and TTG IGG tests.  Good for screening but it does not catch all celiacs.  My TTG tests are always negative even on follow-up testing.  The DGP test catches a positive for me.  My biopsies revealed moderate to severe damage.  If my celiac-savvy GI did not order the complete panel, my celiac disease diagnosis would never have been caught.   if celiac disease is really ruled out, research mast cell disorders.  The flushing and GI upset sound familiar!  You can have more than one thing going on!  But I would put my money on celiac disease!            
    • tightness in throat after eating gluten?
      I've noticed that if I accidentally eat gluten, for the next few days I have this tightness in my throat. It feels like my throat is closing. It's not constant, but comes and goes throughout the next 1-3 days. My hands have also been itchy. Is this a normal symptom for celiac or gluten intolerance, or could it possibly be an allergy? I haven't been tested or diagnosed with celiac or anything yet, so I'm still not entirely sure. All I know is that gluten makes me very sick.. But especially with the itchiness and tight throat.. I'm allergic to acetaminophen and my reaction is similar, so it just makes me wonder. What do you think?
    • Diagnosis and Test Results
      I am sorry that you are sick!  😔.  I think you need to find out which celiac antibody tests were given.  Often just the TTG Is ordered for initial screening.  This test catches most, but not all celiacs (like me!)   You also need to see if they gave you the igA deficency test too.   Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)   -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)     http://www.cureceliacdisease.org/screening/ You can go gluten free, but knowing if you have an autoimmune disease is helpful.  celiac disease is genetic (you have the genes, but so does 30% of the population and that's why the gene test is used only to exclude celiac disease and not diagnose it).   All family members should be tested even if they are symptom free.   I hope you figure it out and I am sorry that you had such a horrible experience.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,726
    • Most Online
      1,763

    Newest Member
    bitsunderground
    Joined