Help With Test Results

[Solandra]

A little background: Diagnosed with Hashimoto's disease (and tumor, removed last month and wasn't cancer, just from the Hashi's) in Feb. 2012. Endocrinologist decided to test me for Celiac/Gluten Intollerance in March. The test results came back as:

IgA, Serum - 357 (70-310 is normal)

Gliadin Ab, IgA 22 (0-19 is normal)

TTG Ab, IgA 5 (0-19)

TTG Ab, IgG 4 (0-19)

She said it looked like I had a mild intolerance but "normal" people have those kinds of results and I should, at some point, maybe try a gluten free diet. I decided to do it immediately and have been gluten free for almost two months... it's tough when work brings in muffins and bagels! But anyway, what do you guys think? Should I bother avoiding gluten? I'd prefer not to if I don't HAVE to. An acupuncturist who comes to my work told me everyone with Hashimoto's should avoid gluten because it stimulates the immune response and your body will attack your thyroid more. So, I'm getting told different things, and I'm just wondering. It hasn't been that difficult, just a little annoying, to be gluten free.

[beachbirdie]

A little background: Diagnosed with Hashimoto's disease (and tumor, removed last month and wasn't cancer, just from the Hashi's) in Feb. 2012. Endocrinologist decided to test me for Celiac/Gluten Intollerance in March. The test results came back as:

IgA, Serum - 357 (70-310 is normal)

Gliadin Ab, IgA 22 (0-19 is normal)

TTG Ab, IgA 5 (0-19)

TTG Ab, IgG 4 (0-19)

She said it looked like I had a mild intolerance but "normal" people have those kinds of results and I should, at some point, maybe try a gluten free diet. I decided to do it immediately and have been gluten free for almost two months... it's tough when work brings in muffins and bagels! But anyway, what do you guys think? Should I bother avoiding gluten? I'd prefer not to if I don't HAVE to. An acupuncturist who comes to my work told me everyone with Hashimoto's should avoid gluten because it stimulates the immune response and your body will attack your thyroid more. So, I'm getting told different things, and I'm just wondering. It hasn't been that difficult, just a little annoying, to be gluten free.

It is meaningful that you tested positive, even "low" positive, for gliadin antibodies. Your body is seeing gluten as an invader, and attacking it. If not celiac, you are gluten sensitive. I have always heard Hashi's patients should avoid gluten, and having hung out on several thyroid forums for over 10 years. The experience of fellow Hashi's sufferers confirms that a gluten-free diet has been very helpful to them.

I have Hashi's, but have not lived gluten-free for long though I generally ate low quantities of bread and pasta just for weight control. I went on a glutening binge over the last 6 months, and I can really feel the irritation in my neck in the thyroid region. It is so uncomfortable! I am back to feeling some of what I felt before I got treated; the sensation of not wanting the neck of my shirts or the sheets in my bed to touch that part of my neck; kind of like having a little swollen lump in my throat, too. The acupuncturist gave you good advice.

Yes, it is quite worthwhile for you to be gluten free.

[Solandra]

Thanks for replying. I also had weird sensations and didn't like anything on my neck, either. I figure I do NOT want to go through surgery again to get the other half of my thyroid removed, so if I can prevent more tumors from growing by reducing my immune response, it would be worthwhile. Good to know that you also think I am gluten intolerant and should avoid it.. someone on a Thyroid forum said the same thing. *sigh* Guess I have all the confirmation I need to give me the willpower to avoid the bagels in the breakroom.

[sa1937]

Welcome, Solandra! Well, you could bake something so delicious that your co-workers would be envious of what you're eating and wish they could skip the bagels!

[pricklypear1971]

I think your doctor is wrong and you are probably Celiac.

You may expect some elevation in tests from having another ai disease, but your doctor is incorrect to assume this is normal.

You need a full vitamin work up - iron, b's, d, call/mag and k.

And a new doctor??

[Solandra]

She's an Endocrinologist, so I'm not expecting her to be super well versed in this.. but she had a good idea to at least test me. I will ask my regular doctor when I see him, and just continue to avoid gluten because I feel better. That's interesting that you think I have full blown Celiac.. someone else told me that years ago and I didn't think anything of it. I have been low on vitamin D and iron for YEARS! Makes so much sense now.

[Solandra]

I asked my family doctor for a second opinion.. He said it's an inconclusive test result but that I could try eating toast or something to see how it affects me. I'm scare of getting sick, though. What should I look for it I try it? I miss bread and stuff and don't want to avoid gluten if I don't HAVE to, you know? Should I try?

[GottaSki]

Welcome!

Yes, you can have Celiac Disease with only slightly positive blood - I had only slightly positive tests and my kids all tested negative but had celiac symptoms that improved gluten-free.

Since you have seen some improvement gluten-free, had a positive blood test and have Hashi's - I'd say it would be a good idea to remain gluten free for at least 6 months then re-run blood work. Especially your vitamins/minerals (Bs, D, K, Iron, Ferritin, Copper, Zinc). You'll likely have some improvement showing that you are absorbing your nutrients better gluten-free. Malabsorption is an important indicator of Celiac Disease.

I'd imagine you will see other things improve as time passes gluten-free. If you are still in doubt as to whether you need to remain gluten-free after six months - you could do a gluten challenge/more testing.

Good Luck!

[Solandra]

I have been pretty much gluten free since March I think.. Except I was eating Thai and realized it had soy sauce. I didn't notice any discomfort, though, so maybe a small amount doesn't bother me? Who knows.. I guess I could challenge and see what happens, but I also don't want to cause problems. I keep getting told different things by medical professionals, so that makes this whole thing confusing, and plus I'm a whiney baby and don't want it to be true! LOL

[GottaSki]

You are not a whiney baby - living gluten-free is tough for everyone at first - especially if you aren't certain there is a need. Given that you mentioned that it wasn't that difficult for you - I'd say stay with it until you are certain you want to challenge. I have one son that had improved health after going gluten-free, but doesn't have severe reactions to cross-contamination or accidental glutenings like the rest of our family, so is considering a challenge - he's been on the fence for a few months.

Living gluten-free does become much easier the longer you do it...at some point it becomes natural. You can find replacements for any gluten treat you are missing.

[MitziG]

I agree that you are most likely celiac. It is not unusual for blood tests to be negative, and the one you tested positive for is very specific for celiac. They should have tested EMA as well- probably too late to do it now though. Also, your doc should have ordered an endoscopy to confirm Celiac. It is tough to commit to a gluten-free diet for LIFE when you don't know for sure.

That said, Hashimotos and Celiac go hand in hand. That you have Hashi's AND a positive blood test leaves little doubt that you are Celiac. You would do well to consider yourself one.

[Solandra]

Ok.. I will trust you guys one this one, it's just confusing. But, I went by Whole Foods today, which for some reason is the first time I went there since my diagnosis, and I found a giant WALL of gluten free stuff, along with fresh bread.. I got a loaf of fresh whole grain gluten free bread, along with some rosemary focaccia bread. THIS MADE MY DAY! I will have a peanut butter and jelly sandwich! I also found frozen DOUGHNUTS! OMG! I feel a little more positive now.. at least, once in a while, I can still have bread and doughnuts.. makes my life a little happier.