Need Info About Getting Tested

[canuckchick]

Hi there...

So, a couple of months ago my little sister, after being dreadfully sick for weeks (and after years of suffering digestive problems before that) had a positive blood test for Celiac disease. (I don't know exactly what blood test she got, and her doctor didn't seem to know anything, but she has responded very well to a gluten-free diet and decided not to bother with a biopsy after that.) She has been urging me to get tested.

I haven't had any seriously upsetting symptoms, but I do experience the following:

- crazy gas most mornings (not stinky, just a huge amount of trapped air in my guts that seems to all want out after a night's sleep!)

- weird, irregular bowel movements (sometimes loose, sometimes constipated, weird consistency)

- bags under my eyes

- difficulty concentrating

- I have this weird spot on my tongue that won't go away

I didn't consider that any of the above could be gluten related until I started learning about it after my sister's diagnosis.

I recently did a 10-day cleanse program, which included the elimination of wheat, dairy and sugar from my diet. My morning gas all but disappeared, which was pretty amazing to me. So after the cleanse was over, I decided to introduce wheat all by itself, to test it. Sure enough, yesterday I had several slices of bread, and this morning, my gas was back.

I called my doctor and booked an appointment for Monday, and I will ask to be tested. I'm planning to gorge on wheat all weekend for good measure.

What I'm wondering is... is ten days off enough to throw off the tests? and if so, is 4 days back on enough to get the antibodies going again?

There's so much to learn about this and I think that even if the results are negative, I'll still avoid gluten, as I feel better overall and my digestion certainly seems to be better.

Thanks in advance for any help you can offer.

Sarah in Vancouver BC

[happygirl]

You will probably be fine. Make sure you get the full panel of testing:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You should be tested, regardless of symptoms. Many people with Celiac don't have symptoms, so that is why its important for all first degree relatives to be tested.

[happygirl]

duplicate post.

[canuckchick]

Thanks HappyGirl!

I have had a wheat binge this weekend... it has made me feel terrible (at least, *something* has made me feel terrible and perhaps I'm just assuming it's the wheat when it could be anything)...

Here's hoping I get accurate results this week, whatever they are!

[canuckchick]

Saw the doctor yesterday...

she wasn't totally clueless, though it was obvious that I was better informed than her, after my three days 3 days doing obsessive research (mostly in here!)

She ran the tTG one, but told me that the other two (AGA and EMA) were "old" and that people don't do those any more, and they don't tell you anything useful.

Is this true? It looks like most people here have had those ones done as well?

If my tTG results come back negative, should I ask for the rest?

I just really want to know whether I actually have celiac. To me it feels like the difference between choosing to avoid wheat because it seems to upset my system in various not-too-drastic ways, and knowing I HAVE to avoid gluten because it's poisonous to my body. Without a fairly conclusive diagnosis, I think it would be hard to be very militant about it.

Thanks!

[fedora]

with your dietary response and family history I would not risk developing any more damage. I don't know if I am just gluten intolerant or full blown celiac. But I do know I do not want to be full blown celiac and my life is better without it. No one has proven to me that gluten intolerant people without celiac don't have a higher risk to the same cancers as celiacs. So I assume I do have a higher risk. My grandmother had lymphoma and my other grandmother has melanoma. I don't carry either of the 2 main celiac genes, but have lots of symptoms in the family.

Good luck. Happy healing.

[ravenwoodglass]

Saw the doctor yesterday...

she wasn't totally clueless, though it was obvious that I was better informed than her, after my three days 3 days doing obsessive research (mostly in here!)

She ran the tTG one, but told me that the other two (AGA and EMA) were "old" and that people don't do those any more, and they don't tell you anything useful.

Is this true? It looks like most people here have had those ones done as well?

If my tTG results come back negative, should I ask for the rest?

I just really want to know whether I actually have celiac. To me it feels like the difference between choosing to avoid wheat because it seems to upset my system in various not-too-drastic ways, and knowing I HAVE to avoid gluten because it's poisonous to my body. Without a fairly conclusive diagnosis, I think it would be hard to be very militant about it.

Thanks!

Whether you are 'celiac' yet or 'just' gluten intolerant is really in the scheme of things immaterial. You still need to be just as vigilant if you are gluten intolerant as if you are full blown celiac. The blood tests are also not real great, even the new one misses 30% of us. The fact that you eliminated gluten and then reacted when you added it back in was one of the most diagnosticly accurate 'tests' you can have. Whether you are celiac or gluten intolerant your body is still making antibodies that are attacking your entire system.

[Tim-n-VA]

First let me apologize because this is essentially the same post I put in lots of these threads but my experience on internet boards is that very few people read everything, even the thread they are posting in...

There are two sides to this. One is what you need to know for dietary choices. That is pretty clear just based on your response to removing gluten. You'll feel better if you don't have it. The other side has to do with knowing definitively what is happening in your body when you have gluten because of the issue of disease clusters. By that I mean if you are truely celiac you need to at least be aware of your increased risk for other auto-immune diseases. If you have a wheat allergy you need to be aware of an increased risk for other allergies.

I have never seen a medical definition for gluten intolerance. On this board it is used is at least two different ways. On other boards I've seen at least one other definition. Not all of these defintions involve anti-body production.

[ThatlldoGyp]

Usually, 10 days off gluten in a normal adult with celiac is not enough to heal or totally clear the autoimmune responce, so eating enough this weekend plus whatever else you have done should still have you in the positive with bloodwork, as long as you are not IGA deficient. I would not even do a gluten challenge personally, but it is your decision and everyone here should respect that.

But it does sound like whatever the bloodwork says, you need to go gluten free, autoimmune response or not, your body is telling you something and you need to listen. I am celiac, my bro is gluten sensitive, we are both gluten-free and it sounds like you should be too! Blessings and happy healing!

Hey, bookmarked this just for this type of thing, go here:

Open Original Shared Link

[canuckchick]

Sigh... still waiting for test results! Apparently the lab waits until they have a bunch of tTG tests to do, and then does them all at once.

It's hard to know what to think anymore. I have started eating gluten-free, to see how that feels.... and I can understand why people get hung up on having a diagnosis. There is this feeling like I am just being difficult and high maintenance, because I don't have an official disease label to slap on myself (yet?)

I'll find out next week... in as much as the blood tests are reliable...

[ThatlldoGyp]

Oh my god, the wait is the worst part of the whole thing... I can't believe they are making you wait to find out... just a life changing diagnosis, that's all....

You are not being high maintainence, and having an official diagnosis IS a relief. Add that to feeling like no doctor should ever ignore you again (and God help them if they do!lol!)... so I understand wanting to know exactly what is going on with your body.Almost all of us have had our symptoms dumped in the "you're crazy" or "your a hypochondriac" bucket, so an official diagnosis is usually such a relief...Personally l was happy to wave my diagnosis in the air and go "HA, told you so!" (on the inside) (I was also doing a mental happy dance of relief I was finally getting somewhere at the time). My diagnosis made me feel like I was finally going to be able to do something to help myself as well as finally get a little help/respect from the medical community. I hope that they finally get to the bottom of your issues and you get well. Blessings!

Oh, beware of the IBS "dump bucket" It is the other thing that they dump your problems into if they can't come up with anything else! That doesn't mean that you don't have IBS, it just should not be the first conclusion they jump to without furthur investigating. I "fired" one GI for doing that to me, and it was def. the right decision. Don't be afaid to get a second opinion, just keep at it until someone helps you! Good luck!