TTg IAG > 100 but also Hasimoto's

[ravenu5]

Hello!

I've been battling symptoms for just over a year now.  A lot of back and forth and blood tests and even though my Dr. put me on synthroid for elevated TSH levels it wasn't until a few months ago she ordered the antibody test (TPO) and my TPO was >1000 so Hashi's was confirmed.  I kept hoping that if I got my thyroid numbers in line that all my stomach issues and fatigue would get better.  

My thyroid numbers are such that they will not increase my synthroid dosage, but my stomach and fatigue issues remain.  She did give me a referral for Gastro and I have my appt in just a couple more weeks.  I went gluten-free for a few weeks to see if it would help (all the time thinking thyroid issues) and after 3 weeks I thought I started to feel better.  It wasn't until I went back on gluten that I REALLY noticed how much the last few weeks had made a difference.  I read that to test for Celiac you had to be on gluten so I've been back on since.  I asked my dr to order a celiac blood test before my GI appt so that we could at least get a feel for that. 

She only ran the TTg IAG and my results were 124 with a reference range of 

Negative: <20
Weak Positive: 20-30
Moderate to Strong Positive: >30

I've also read though that Hashi's can cause a false positive.  With my TPO numbers being so high what do you think the odds are that my TTg numbers could be a false positive? 

I'm so anxious to get to the GI.  I so desperately want to go gluten-free as I feel like I'm poisoning my body every time I eat.  I'm so worried that the GI dr is going to tell me I have to wait another month for a scope which would mean even longer of eating gluten.... 

 

[SLLRunner]

Welcome, @ravenu5 

For the blood tests it is recommended that you be on gluten for 8-12 weeks prior to blood tests, and 2 weeks prior to an endoscope. You must consume gluten until all testing is complete. 

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Good luck, and please keep us posted. 

 

[cyclinglady]

I think you have celiac disease.  It is probably NOT a false positive.  

You could ask your GP to order a full celiac blood panel for extra confirmation until you see your GI for the endoscopy.  

In my case, I have Hashi's (antibodies were off the charts) yet when testing for celiac disease my TTG was negative.  I just had a positive DGP IGA yet my intestinal damange was moderate to severe.  

I spent the time I had waiting for my endoscopy (7 weeks) enjoying all my favorite gluteny things.  It was a fond farewell.  Maybe think about doing that.  Also, check with the GI in case someone cancels their appointment.  

Hang in there!  You will be feeling well again soon.  

[ravenu5]

Yeah I have went back on gluten weeks ago while I wait for testing   I'm sucking it up and dealing until I get into the GI.  

7 weeks!!! YIKES! I hope I don't have to wait that long! Though I did start a gluten bucket-list.  I figure if I don't have celiacs I'm still going off gluten because while it did take a few weeks, there was definite improvement.  

I'm trying to enjoy all my bucket list foods but I'm also so tired of my stomach hurting so badly all the time and the overwhelming fatigue.  I guess in a way that is a good thing because that does make saying goodbye to all those gluten foods that much easier! 

Next up on the bucket list...deep dish pizza and fried chicken! Pretty sure I'll gain about 20lbs between the food and the bloat! lol 

[Ya Ya]

Good day! Your post made me smile!  I remember my last gluten including meals before the endoscopy that changed my life!!  An everything bagel for breakfast and a gyro platter for lunch that included pita!

That was 10 years ago!!  gluten-free food has come a long way since then!!  and I have a gluten-free everything bagel now and then, and even gluten-free pita, gluten-free breaded chicken strips, and gluten-free pizza!!

I will also admit to having the occasional 'gluten dream' where I wake up in a panic thinking I ate glutenous cookies or brownies....and I've also had meltdowns when I felt like I could Never eat the way I wanted to again!

But~~~Now that I am gluten-free for all these years, I am thankful to not have to worry about where the bathroom is so I don't have an 'accident' or smelling like a sewer if I pass gas, or having horrid headaches.....

I read labels obsessively and know which cooking spray is gluten-free, where I can buy a gluten-free fast food treat, and most important what to avoid!

Best Wishes to you!!

 

[ravenu5]

It certainly is bittersweet!  I wonder if most remember their last gluten meal lol 

My 9 year old has had a severe peanut allergy since he was born so we haven't had peanuts in the house for 9 years and I rarely eat them when I have a chance.  We use a peanut butter alternative for all our baking and cooking and I honestly can't taste the difference, but then again I haven't hardly had peanuts in 9 years! I'm hoping the same goes with gluten.  After a few years it will all be but a distant memory.  

It is kind of like saying goodbye though, a bit bittersweet.  There will certainly be some things I will miss, but I won't miss these side effects from it.  

It creates a funny mental image though of being surrounded by gluten goodies and eating and enjoying, sobbing in between, eating, sobbing, grabbing stomach, eating, sobbing...lol 

I'm trying to enjoy my bucket list through the cramps and pain and keep telling myself hopefully only a few more weeks! 

[Gemini]

7 hours ago, ravenu5 said:

Hello!

I've been battling symptoms for just over a year now.  A lot of back and forth and blood tests and even though my Dr. put me on synthroid for elevated TSH levels it wasn't until a few months ago she ordered the antibody test (TPO) and my TPO was >1000 so Hashi's was confirmed.  I kept hoping that if I got my thyroid numbers in line that all my stomach issues and fatigue would get better.  

My thyroid numbers are such that they will not increase my synthroid dosage, but my stomach and fatigue issues remain.  She did give me a referral for Gastro and I have my appt in just a couple more weeks.  I went gluten-free for a few weeks to see if it would help (all the time thinking thyroid issues) and after 3 weeks I thought I started to feel better.  It wasn't until I went back on gluten that I REALLY noticed how much the last few weeks had made a difference.  I read that to test for Celiac you had to be on gluten so I've been back on since.  I asked my dr to order a celiac blood test before my GI appt so that we could at least get a feel for that. 

She only ran the TTg IAG and my results were 124 with a reference range of 

Negative: <20
Weak Positive: 20-30
Moderate to Strong Positive: >30

I've also read though that Hashi's can cause a false positive.  With my TPO numbers being so high what do you think the odds are that my TTg numbers could be a false positive? 

I'm so anxious to get to the GI.  I so desperately want to go gluten-free as I feel like I'm poisoning my body every time I eat.  I'm so worried that the GI dr is going to tell me I have to wait another month for a scope which would mean even longer of eating gluten.... 

 

Although Hashi's can raise tTg levels, usually it's a lesser increase than a 124.  I have both Celiac and Hashi's.  So...it would not be a false positive at all.  You either just have Hashi's or you have both Celiac and Hashi's. Seeing as Hashi's occurs frequently with Celiac, you need to eat that awful gluten for testing.  Also, Synthroid may not be the best choice for treatment with someone who has autoimmune thyroid disease.  Very often, many find that treating with both T3 and T4 hormone works the best at taming down those symptoms.  If you are still symptomatic after treatment, they need to test you for your thyroid hormones, T3 and T4..which very often they do not.  They go by the TSH, which is not the best choice for monitoring your levels. You could also have celiac and not be absorbing your meds well. Something to keep in mind.......good luck with testing!

[ravenu5]

Thanks for pointing all that out Gemini! I look forward to finally getting off gluten for good to see how much everything changes.  I never thought about the absorption of my synthroid with all my other issues.  I just see my primary dr. for all my thyroid, perhaps I will ask for a referral to an endo dr for further evaluation and treatment.  Thanks for all the information! 

[ravenu5]

I had my GI appt today! I am scheduled for my EGD first thing tomorrow morning! I'm his first appt

So no matter what it shows, gluten doesn't appear to agree with me, whether it be Celiac or intolerance today is my last day having to eat it and I couldn't be happier! After the GI appt I went straight to the store and stocked up on gluten-free-foods so I have something to eat tomorrow. 

I will have my last gluten filled beer before I go to bed!

[cyclinglady]

15 minutes ago, ravenu5 said:

I had my GI appt today! I am scheduled for my EGD first thing tomorrow morning! I'm his first appt

So no matter what it shows, gluten doesn't appear to agree with me, whether it be Celiac or intolerance today is my last day having to eat it and I couldn't be happier! After the GI appt I went straight to the store and stocked up on gluten-free-foods so I have something to eat tomorrow. 

I will have my last gluten filled beer before I go to bed!

Good luck!   Soon you will be on your way to recovery!   

Think of me when you drink that beer.  In the past three years, I have purchased gluten-free beer three times and have literally gagged on it.  I poured the rest out as no one else was willing to drink it.  Hard cider was horrible too.   So, I stick with wine.  I love red, but it causes inflammation (like Rosacea).  So, white wine or vodka for me!  

 

 

[ravenu5]

Aw man! I knew there was gluten-free-beer and I figured it wouldn't be *exactly* the same but I had hopes! lol

I suppose I too will have to stick with wine! 

 

[Gemini]

You two may want to try Green's Beer from Belgium, if you can find it where you live.  It is sold in pint bottles and is not exactly cheap but my husband drinks it and he loves the stuff.  Prefers it to all other gluten-free beers but he doesn't think much of other gluten-free beers.  There are about 4 different types...lighter and darker beers.  The darker ones carry quite the kick...some have 8% alcohol.  Woo Hoo!  

As for myself, I drink red wine only.  I never developed a taste for beer but I drank some before I knew I had Celiac and got so sick, never touched the stuff again.

Good luck on the endo, ravenu!  You have a good mind set already.  I was the same way.  I never looked back and never cheated and never miss the stuff.  It just isn't worth how badly I feel when I eat it!

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[ravenu5]

Thanks Gemini for the beer suggestions! I looked it up and I do have places that carry it near by! Totally going to go find some to try

 

Had my EGD this morning and confirmed Celiac.  Confirmed visually but the dr. still took biopsy samples too.  Not too surprising as I figured that would be the case. 

I had to laugh a little though, as I was in recovery from the anesthesia they offered me juice and crackers and I just instinctively said yes to and ate.  As I was eating the last cracker....it dawned on me.... Not used to all this just yet!

So as my first day as gluten-free, I made it 99.98% the way there   

[Gemini]

OMG!  They didn't offer you gluten-free crackers?????????  Thanks for verifying the Celiac and for the gluten, doc! 

Just so you know...there are some awesome gluten-free crackers out there!