Blood Test ?

[Scuff]

I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. 

Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way. 

[Jmg]

Hello and welcome

3 hours ago, Scuff said:

. Is this going to be enough to show up on the tests?

Maybe?

From reading others accounts there's a big variation in how quickly gluten antibodies respond to the gluten diet. I did similar to you and my doctor said that 1 week back on should be enough to show up in a test, but he didn't know what he was talking about sadly...

The 2 week figure refers to the endoscopy, for blood testing 8-12 weeks on gluten is more normal. 

Basically if it comes back positive fine you have your answer. If its negative it may be a false negative due to your going gluten free beforehand.

3 hours ago, Scuff said:

If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers.

If you want to pursue a diagnosis then yes. Don't go off gluten again until you confirm that all testing is complete.  Keep a journal noting any symptoms, that may be useful to you later. More info here:

There's some good info in the site faq:

https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

3 hours ago, Scuff said:

Obviously, gluten's not going to be a part of my life any more either way. 

I know how you feel! Partway through my gluten challenge I knew that too results notwithstanding. Fwiw I think you've found your answer. Good luck!

[Scuff]

Thank you so much. 8-12 weeks! Oh my goodness, I don't think I can do that. I think going gluten-free made my body's defenses go down or something. I felt bad before, but reintroducing it was completely awful! I still feel queezy a few days later. Let's pray it just comes back positive. lol

[Jmg]

41 minutes ago, Scuff said:

Thank you so much. 8-12 weeks! Oh my goodness, I don't think I can do that. I think going gluten-free made my body's defenses go down or something. I felt bad before, but reintroducing it was completely awful! I still feel queezy a few days later. Let's pray it just comes back positive. lol

That's a very normal reaction believe it or not. I would always tell someone to stay on gluten before testing is done because it's a lot easier staying on it than it is reintroducing it. I felt worse on my challenge than I had before giving it up the first time. 

Whilst a definite diagnosis is the aim of many (I tried myself) and has benefits in terms of health monitoring etc there is no treatment other than the gluten-free diet so if you get negative or inconclusive results and can't face the further challenge you could choose to forgo it and just go gluten free. 

Either way there will be plenty of support for you here. all the best.

[Scuff]

This place is great. Learning a lot. Honestly, I've known people with celiacs in the past, but it never occurred to me that that's what could be wrong with me. But the more I learn, the more it fits. One more thought, the articles I'm reading seem to say that we need to avoid gluten meticulously. I'm certain that I didn't accidentally eat gluten, because I've basically only eaten meat and veggies. But, my family has continued eating as normal. My kids making pancakes and it getting in the air,  toast with all the crumbs everywhere, etc. Could that exposure be enough to keep my blood antibodies high? Or does it need to be ingested? 

[notme]

^^^^^^ good info, tips and tricks^^^^^^^^^

yes, crumbs will make you sick.  also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some. 

[Scuff]

Test results are now on my patient portal showing up negative. Looks like she did Tissue Trans IGA, Endomysial IGA, and IGA. The list I wrote down yesterday said that you need tTG, EMA, DGP, IgG & IgA. (I don't remember where I found this list or what they stand for?) Did I only get one of the needed tests? Or? She has been wonderful, actually listening to me and taking this seriously. But maybe it's time to ask to be transferred to a gastro? I have an appointment with her Wednesday, so maybe she'll already have a next step planned. I'm just not really sure what should be next. 

[Jmg]

1 hour ago, Scuff said:

Test results are now on my patient portal showing up negative. Looks like she did Tissue Trans IGA, Endomysial IGA, and IGA. The list I wrote down yesterday said that you need tTG, EMA, DGP, IgG & IgA. (I don't remember where I found this list or what they stand for?) Did I only get one of the needed tests? Or? She has been wonderful, actually listening to me and taking this seriously. But maybe it's time to ask to be transferred to a gastro? I have an appointment with her Wednesday, so maybe she'll already have a next step planned. I'm just not really sure what should be next. 

Ok, at the moment you have positive reaction to gluten free diet but negative blood test. For me that was enough for a gastro to have a look via endoscopy, but that's not always the case. As above you have the complication of having been gluten free which may have compromised the test plus their standard test doesn't include the DGP or IGG which can catch some of those that test negative on the TTG. You can ask if those additional tests are available in your area / healthcare system?

You also mention a DH rash. That could be tested if you're referred to a dermatologist. They would need to take a sample near an outbreak, check the DH forum here for more details. A positive DH equals celiac.

You have to decide if you want to continue looking for an answer, in which case ask either for second more comprehensive blood test after a longer gluten challenge or a referral to a gastro results notwithstanding and STAY ON GLUTEN! or leave testing for now if you want to change to the diet to see if you can get healthy that way. 

Not something anyone else can decide upon. I was in your position, went through testing and was found negative for celiac. It doesn't stop me reacting to gluten however...

Good luck

 

 

 

 

[Scuff]

Got a referral (in process) to see a gastro and I'm going to try and eat a little gluten each day. :/  She did tell me that I tested positive for mild allergies to milk and eggs. That kinda makes sense, because I knew I had issues with milk that didn't seem to fit lactose intolerance. And I do sometimes feel sick with eggs.  Not sure what I'm going to eat anymore! lol This is going to be an interesting health quest for awhile. 

 

[Victoria5289]

On 4/26/2017 at 11:31 PM, Scuff said:

I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. 

Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way. 

If this a women check for ovarion cancer then check for an aorta issue 

[Dayle]

I truly hope that you are feeling better....In my own case, I was found to have celiac in 3rd grade.

But I h had a Bad MVA, which left me with 3 skull fractures ,and  traumatic brain injury, so I have no idea about what took place. I only know that in 1976, I was so sick with stomach problems,that sometimes I would be in the bathroom for over hour.....

SO, I now, know, what I should have known years prior. I am doing somewhat better.Hope that you get somewhat better, being gluten free...

Blessings to you,Dayle

 

 

[Scuff]

On 5/17/2017 at 0:32 PM, Victoria5289 said:

If this a women check for ovarion cancer then check for an aorta issue 

Yikes! What did I say that indicates ovarian cancer or aorta? 

[Scuff]

On 5/17/2017 at 0:55 PM, Dayle said:

I truly hope that you are feeling better....In my own case, I was found to have celiac in 3rd grade.

But I h had a Bad MVA, which left me with 3 skull fractures ,and  traumatic brain injury, so I have no idea about what took place. I only know that in 1976, I was so sick with stomach problems,that sometimes I would be in the bathroom for over hour.....

SO, I now, know, what I should have known years prior. I am doing somewhat better.Hope that you get somewhat better, being gluten free...

Blessings to you,Dayle

 

 

Thanks. I've been back on gluten, about a slice of bread a day, for a couple of weeks. I kinda eased myself into it and have taken days off when it's gotten really bad. Not sure if that's going to be enough for testing, but whatever. The worst symptoms haven't come back. (probably not eating enough) I have a GI appointment at the end of June. I'm on the cancellation list, though and hoping for quicker appointment. The dr is a celiac specialist, so I'm hopeful. 

[ironictruth]

3 minutes ago, Scuff said:

Yikes! What did I say that indicates ovarian cancer or aorta? 

That is a new user with some really odd advice on multiple posts. Other users have theorized there may be a language/translation issue as well. 

[Scuff]

Ah, thank you. That makes more sense. 

[Scuff]

Went for my endoscopy yesterday. (9wks on gluten) Had bloodwork redone at 7 wks. Came back negative. Dr said she did genetic testing, too and that came back negative. Super confusing, since I've had a rash that looks and acts just like a DH rash (but hasn't come back enough to pursue a biopsy) Waiting for biopsy results and day one back gluten free. Throughout this adventure, I've also found dairy allergy and lactose intolerance and sesame and egg white allergy. Not sure what to eat for breakfast