What Would You Do?

[screwtapeltrs]

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.

[roomorganizing]

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.

[mushroom]

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.

[nvsmom]

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 ).

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.

[gatita]

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).