A Little Bit Confused...

[Georgia-guy]

I was talking to a friend of mine who is a dietician (will be a huge benefit if I get the Dx) about medical stuff I've been dealing with for as long as I can remember with no answer. She suggested to me it may be celiac, so I went to the doc and asked about it. The doc seems to agree that celiac can explain about 98% of my medical issues, and is requesting insurance approval (gotta love that you need approval for all kinda stuff now) for testing to confirm celiac. The question I have though after doing some reading, isn't celiac genetic? Doesn't this mean that for me to have celiac, that a family member going up the tree would also have celiac?

[Adalaide]

Yes, it is genetic. Everyone who has it has the genes for it but not everyone who has the genes for it has celiac. Having the genes simply means you may get celiac. You could could have many relatives in your ancestry (or alive) who have the genes and never developed the disease. There is also no way to know how many in your ancestry may have died of celiac.

 

ETA: it is also possible to be something called a silent celiac. This means that you actively have celiac and the damage is being done to your body but you have no classic symptoms. Again, there would be no way to know if anyone in your family fit this either.

[nvsmom]

Autoimmune problems run in families, and if you have one autoimmune disease, or near relatives who have one, then you are more likely to develop one.  For instance, I have throiditis and ITP, and I have cousins with celiac disease, rheumatoid arthritis, and quite a few family members with thyroid problems... and that's just the obvious ones I know about, so there is a strong risk of celiac disease in my family (or any other autoimmune disease).

 

And as Adalaide pointed out, celiac disease can be silent, as can many other diseases.  Plus there are the family members who don't share health problems so you would never know if they had something.

 

Best wishes.  I hope testing goes well. Oh, and don't forget to keep eating gluten until all testing is done.

[Georgia-guy]

I know my mom has thyroid and fertility issues, that's all I know out of my family's medical stuff that is anything people have brought up.

I guess it is a good thing that my doc needs to get the insurance to approve the testing, because after my friend said something, and doing some research about the symptoms of celiac and realizes how much about my medical history is explained by it, I went a week without eating gluten (and I don't mean just no bread/wheat, I mean actually no gluten) and I noticed some of my issues start to fade and I started to feel a little more "normal". But after finding out you have to still eat gluten for tests to be accurate, I'm starting to feel even worse than before (and I'm not sure if that's psychological or not).

[nvsmom]

...". But after finding out you have to still eat gluten for tests to be accurate, I'm starting to feel even worse than before (and I'm not sure if that's psychological or not).

 

I think a lot of us do not realize how badly we were feeling until we start getting better. Feeling poorly was our "normal".

 

I'm glad you know you need to keep eating gluten before you get tested. Not having that knowledge has really messed up many people's diagnosis, so i'm glad you have read up on it!  

 

When getting tested, get as many tests as possible as the tests are not perfect and you can get a false negative on one test but not the other.  The best tests are:

• tTG IgA and IgG
• DGP IgA and IgG
• EMA IgA 
• total serum IgA (control test)
• AGA IgA and AGA IgG (older and less reliable tests)

 

Best wishes!

[Georgia-guy]

I've gone through so many times of doctors saying "it's this" and tests come back negative, and treatment does nothing, or sometimes even makes me feel worse. The week with no gluten is the first time I've seen any type of improvement. So what am I supposed to do if these tests come back negative?

[nvsmom]

If the celiac disease tests come back negative, then you can probably assume that you have non-celiac gluten intolerance (NCGI). NCGI has all the same symptoms as celiac disease except for the villi damage, and it is much more common ( in up to 10% of the population). There are no blood tests for NCGI at this time, so diagnosis is by a positive response to the gluten-free diet, which you have already had.

There is also a chance, if the tests are negative, that you do have celiac disease and the tests were falsely negative, but that occurs only in a small minority of celuacs.. Either way though, treatment is a 100% gluten-free diet for life.

Good luck. I hope your test results are definitive.

[Georgia-guy]

Well, the tests may be getting done tonight. I went earlier to Waffle House (since I know everything I eat there is gluten loaded and I won't be able to have on a gluten free diet), and now I really don't feel good. It started with severe abdominal pain and bloating, then the fatigue and irritability kicked in, and it's been downhill since. :-/

[GottaSki]

Welcome G-Guy!

 

I'm tired so forgive me if I get your timeline wrong.

 

You removed gluten this past week (to the best of your knowledge) and tonight ate gluten-heavy and feel like crap.

 

If I sped-read this correctly - here is what you should do.

 

- Drink lots of water.

- Eat one slice of glutenous bread each day until you have the complete celiac antibody panel Nicole listed.

- Have the doctor order additional tests:  CBC, CMP, B12, D, K, Iron, Ferritin, Copper and Zinc.

- Wait for blood results to decide with your doctor if endoscopic biopsy is the next best step.

 

Hang in there

[Georgia-guy]

So from everything I have read and heard about celiac testing, you have to get it done while still eating gluten. I'm sitting at the hospital right now, and the doc just told me that you do NOT have to have gluten in your diet at the time of testing...which one is it??

[cyclinglady]

For the blood test to be valid, you should be consuming gluten for 2 to 3 months or a few weeks if you are just doing the biopsy. Go to the University of Chicago's celiac website and review the testing requirements with your doctor.

Open Original Shared Link

[cyclinglady]

For the blood test to be valid, you should be consuming gluten for 2 to 3 months or a few weeks if you are just doing the biopsy. Go to the University of Chicago's celiac website and review the testing requirements with your doctor.

One week without gluten should be okay......

[cyclinglady]

Testing for celiac disease on a Saturday night? Are you in the ER? I hope you are okay!

[Georgia-guy]

Last post until 2:16 am whatever time zone this site uses (I appreciate the anti-spam safety nets mods!) but here goes a possibly conplex one....

-In the tests that people have saud need to be done (NVSMom and GottaSki), what is being looked for in there tests exactly?

-ClingyLady, would being gluten free for about a week affect these tests?

-nvsmom, without a Dx, being on a 100% gluten free diet is already see posing a major problem: I am allergic to certain medications and had to get it heavily documented for my doctor and pharmacy to stop giving me meds I can't take. If gluten is in a lot of meds, how do I get them to accept a no gluten requirement?

-ClingyLady, yes I am in the ER

[cyclinglady]

Wow, luckily I am on the Westcoast! But my family lives in Georgia. Will be there this summer.

Anyway, did you see the link to the University of Chicago's website? You can share that with the ER doc. Chances are he'll refer you to a Gastroentrologist for further follow-up and testing.

You have to verify that all meds are gluten free. Talk to the hospital pharmacist if you must. That is why a celiac disease diagnosis can be helpful when you are in the hospital. Say for now that you have an allergy to gluten.

A week of being gluten free should okay for celiac blood testing. The biopsy done via an endoscopy looks for intestinal damage.

The celiac test is looking for antibodies that are attacking your intestinal track.

Are you having a gallbladder attack?

You can list the meds that you take and others can help confirm if they have gluten or there is a med list that someone posted. Just google. To be extra sure, you or your pharmacist must call the manufacturer.

[GottaSki]

So from everything I have read and heard about celiac testing, you have to get it done while still eating gluten. I'm sitting at the hospital right now, and the doc just told me that you do NOT have to have gluten in your diet at the time of testing...which one is it??

 

For the celiac antibody tests to be MOST accurate...one should not reduce gluten consumption. 

 

For your circumstance...run these tests now:

 

Total Serum IgA

tTG - IgA

tTG - IgG

EMA - IgA

DGP - IgA

DGP - IgG

[GottaSki]

I'll stay on this thread for about an hour....ER docs want to help...but not a great place to diagnose an autoimmune disease.

[cyclinglady]

Awful waffle? Are you sure you didn't get food poisoning? Sorry, but that would not have been one of my last gluteny meals! Maybe some BBQ with fries made in an un-dedicated fryer with banana pudding!

Seriously, I am not there and do not have all the facts (not to mention that I am not a doctor), I hope you can figure it all out!

[GottaSki]

Just re-read the thread.  To answer your question regarding what the antibody tests I listed will indicate:

 

tTG - IgA and IgG:  Indicate damage to the small intestine -- these tests are not specific to celiac, but are highly indicative.

 

EMA-IgA -- reflects endomysial damage to the small intestine -- layman terms -- slam dunk for celiac.

 

DGP - IgA and IgG:  This tests for one of the two peptides that make up the gluten protein.  If positive...gluten is an issue, without a doubt.

 

Edited to add:  Forgot...Total Serum IgA - control test to make sure the IgA based antibody tests are accurate.

[Georgia-guy]

GottaSki, the ER is doing discharge papers right now. I'm not sure exactly what blood work they ran (I'm guessing usual CBC), but I do know that they also ran a glucose test since my blood sugar is apparently 178 (doesn't surprise me much). But with the tests you listed, what am I looking for them to show? The ER has online record access so I should be able to look at the lab work in about 24 hours, plus I have stacks of old lab work reports at home for history evaluation.

Cyclinglady (sorry,I've been misreading your name this whole time), awful waffle is just the start of the "last of the gluten binge" I'm about to go on, especially since I can't stop gluten til after the testing is done.

[cyclinglady]

I bet the ER did not run a celiac blood panel. Follow-up with your GP/PCP for testing or a gastro referral.

High blood sugar does occur when you are stressed and being in the ER feeling awful will compound the stress. That should be re-tested after fasting for 8 to 12 hours by your regular doctor. I would ask for an A1c test too. That will track your blood sugar for the last three months. Blood glucose readings over 140 can cause diabetic complications, so please follow-up!

[Georgia-guy]

Last post until 10:15pm ET (unless this one is the magic one that removes the restrictions)...

GottaSki, what numerical values am I looking for in those tests?

Cyclinglady, the ER is gonna be giving me a listing of primary docs around here (just moved a month ago, old doc is about 75 miles away) to follow up with "food allergy testing and glucose testing"

[GottaSki]

Ya, so...the ER is not the proper place for celiac testing.  Follow up with your primary...you have a clear list of tests needed.  For now, eat a grilled cheese sandwich every day until testing is complete.

 

And...tomorrow...rest with as much water as you can drink

[cyclinglady]

Remember, celiac disease is an autoimmune disorder and NOT an allergy. With Celiac when you ingest even a tiny bit of gluten, it sets off an autoimmune reaction throughout your whole body that can last for weeks. There are over 300 symptoms, but there is usually intestinal damage. Allergies can cause symptoms like itchy skin or eyes, swelling etc.

Most ER docs are not knowledgeable about celiac disease. Most docs just get a 1 hour lecture in med school. Go to the websites and print off the info to share with your new doc.

The values on the celiac tests depend on the lab ranges and those can vary.

I would be very concerned about your glucose. Get that checked!

[Georgia-guy]

So I found a doctor (or actually a LNP) that has good ratings, is young (meaning up to date schooling), and close to me. I went to get A1C and a Gluten Panel done, she told me that the insurance was fighting doing gluten testing because there's no history, but she does feel gluten is a good suspect. She told me if the A1C came back abnormal, it would help get insurance to say yes, and has had me keeping a "food and symptom" journal. I'm really starting to notice the correlation between eating gluten and immediate symptoms things like passing out for 3-4 hours. Do y'all have any other ideas that will help with getting my crappy insurance to say yes? I think they are looking at "hey, he's gonna be off the policy in a few months so let's stall til then and make someone else pay for it."