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

Testing For Hashimotos
0

5 posts in this topic

In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it?

Longer version if you have time to read: In 2005 I was diagnosed with chronic idiopathic urticaria (hives) and angioedema (swelling). I spent a hellish year on heavy antihistamines (don't remember much from that year!) I was able to taper off and the hives didn't come back except for a two or three strays. A couple times I'd get a hive on my eyelid, but only in the next couple of years.

Fast forward to Celiac Diagnosis 2009. Three years later I'm still very fatigued (a bit better, but not well enough to fuction independently). My body temp is often low, I'm underweight although I eat a lot. Most of the heavy anxiety I experienced just before dx has gone away with gluten-free, but I still have stray anxiety when I'm in need of food or during PMS. Tonight I had eaten and it's not that time hormonally when my eyelid started to itch pretty badly. It made me anxious (adrenaline) and I got up to look. I had a hive! Just one-like in years past (chronic urticaria tends to strike eyelids and lips most, and it's not an allergic reaction, but an autoimmune one). So, I'm a little freaked out because I don't want to go back to that issue.

I spent a lot of time researching chronic idiopathic urticaria in '05, but seven years is a long time in the current autoimmune world, so I thought I'd look it up again. Tonight when I looked, two of the first three hits said that many people with chronic urticaria have autoimmune thyroid issues. By many I mean 30-40%. That's pretty huge.

I'm currently on GAPS diet (grain free, etc), and have tested for food allergies (98-skin prick) and have none (although there seem to be a few foods I can't handle for other reasons. I'm fairly certain my eye hive wasn't a food or environmental allergy. If you've dealt with chronic hives you'll know what I mean. I've also started reading about histamine intolerance. Fascinating.

Thoughts? At least I hope to get my questions on Hashi's answered.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I don't know about Hashimoto's testing (just that my doc said I did NOT have autoimmune thyroiditis--however that was determined). But, I do know a bit about chronic hives. I had them (for the second time) from about October 2010 until October 2011. Ultimately, the only drugs that worked were a combination of zyrtec and a zantac each day. Going cold turkey off the zyrtec also caused hives (I had to make that change very gradual, stopping in December). I started seeing a homeopath in the winter of 2011. Finally, the correct remedy was found in fall 2011. I did this because allopathic medicine did NOTHING. It was a year of misery, I hear what you're saying. One theory I have is that I had a lot of ibuprofen after my third child was born (may 2010) and triggered something. I knew a few other women who also got random hives after having IV ibuprofen at the hospital (or just ibuprofen in general). My lip swelled when having advil in may 2011, and I haven't had any since. (Btw, the first bout with hives was in 2003, starting about eight months after my first child was born, and about four months after I was diagnosed with postpartum thyroiditis. I also saw the homeopath then. They definitely weren't as bad that time, lasting only five months or so and even disappearing completely in Florida--sun can do that, but not the bout I had last year.)

Allergy testing: blood tests were largely negative (some mild inconsequential allergies), and I couldn't do skin tests because I couldn't go off the antihistamines at all

Skin patch testing: nickel allergy, balsam of peru allergy (I eat foods containing those things, but don't wear anything with nickel, still don't eat raspberries or food dyes, and don't overdo citrus)

The celiac tests were NORMAL in November 2011. I had been gluten "lite", but not in the 30 days prior to the tests. Then, I was eating gluten every day. I tried gluten-free, sort of. Nothing really seemed to make a difference hives-wise. Some things made them obviously worse.

Anyway, I recommend skin patch testing (with a dermatologist who knows about this), and seeing a homeopath.

For other reasons (inability to lose weight despite exercise, gaining more around the middle), I'm trying gluten-free for real right now. It also occurred to me, after reading an article here, that my thyroid meds (levoxyl) are a higher dose than they should be for my weight. I guess I should be at 75mcg, but I'm at 100mcg. It's not a huge difference, but just one more thing that is a bit off. With the hives, I felt like I could do nothing--no exercise, anything I did with eating felt obsessive since it was obvious I still had the hives no matter what I did. There was a definite connection in the "literature" between gluten, hypothyroidism (of course, autoimmune hypothyroidism, which apparently I don't have), and chronic hives, but I wasn't seeing any difference and it was just too depressing.

Good luck!

0

Share this post


Link to post
Share on other sites

They need to run an antibodies test for Hashimoto's. It is possible to have normal levels as the thyroid works in overdrive trying to overcome the attack.

http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Oh, that's interesting. I was negative for Test #2 on that list, but Test #1 was not run. Thanks for that information!

0

Share this post


Link to post
Share on other sites

In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it?

Thoughts? At least I hope to get my questions on Hashi's answered.

Yes, you can have normal TSH/T3/T4 and have Hashimoto's. Hashi's tests are anti-thyroid peroxidase (anti-TPO) and anti-thyroglubulin (TgAb). If they did not do both, they cannot diagnose Hashimoto's.

Which T3/T4 tests have they run? They should have done "free" T3 and "free" T4, totals don't tell you much.

And just how normal is your TSH? Have you gotten copies of your lab reports? If you post them here someone can take a look and give better help. Many doctors will tell you your TSH is normal, but they may be using a range that is far too wide for most people. If you are a high normal on TSH, you could be progressing to an ever higher number. And you could be miserable until the docs decide they are ready to treat you.

I don't know much about chronic urticaria, but my cursory reading indicates that thyroid treatment helps a LOT of people who have it.

There is always the possibility that there is more going on. Autoimmune people have very complicated issues!

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
      104,115
    • Total Posts
      919,447
  • Topics

  • Posts

    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
    • I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them.      I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.   I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.    My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks?  I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own. Any advice or information would be so appreciated! 
    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • Finally, proof that non-celiac gluten sensitivity is real. ... for the 30 percent of consumers who choose to buy gluten-free products and the 41 percent of ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,154
    • Most Online
      1,763

    Newest Member
    calla84
    Joined