Positive Blood Tests

[jenna3]

Hello everyone

I just received a call from my doctor's office that the Celiac lab work they drew returned 3 positive results. 

I asked her to check me for Celiac as it was a suspicion of mine. I don't see the GI until next week. Can someone tell me what these lab numbers mean. I have tried to figure it out, but I'm not getting it. Can these numbers signal 'weak' chance or is it you have it or you don't?

I am 37 years old. I have vitiligo (since 12 years old), chronic autoimmune related hives, thyroid removed from Graves disease at 20 years old, chronic anemia (last ferritin was 2). I've had meningitis and shingles.

I had my gallbladder removed 1.5 years ago and the chronic pain in my URQ has never left. CT scan last August shows only cysts on ovaries, which I also have recurrent problems with.

Stomach pains now for months and months, cramping, burning. Joint pain, headaches, anxiety, etc.

Any advice please!? I am not so concerned about having to cut gluten as I am hoping that this may finally make me feel human again.

[tessa25]

My (not a doc) opinion of those tests is that your gastro should tell you they want to do an endoscopy to confirm a diagnosis of celiac. Keep eating food with gluten until testing is done. Good call on your part.

 

 

[Jmg]

Welcome

2 hours ago, jenna3 said:

Any advice please!? I am not so concerned about having to cut gluten as I am hoping that this may finally make me feel human again.

 3 positive looks about as unequivocal as it gets barring the endoscopy for confirmation. 

You should be proud of yourself for figuring this out and pushing for the test. It looks very much like you've found your answer and hopefully once the testing is complete you can look forward to feeling a lot better. There will be lots of support available here for you when that happens. 

Best of luck

[ironictruth]

Whatever you do,  run to the store now and eat donuts and bagels. Because I think when your endoscopy is done and over with you're not going to see them again. There are a lot of really good gluten-free cookies, cupcakes, brownies, etc.  Donuts and bagels... not so much.

Hope you feel better soon after you get some answers! 

[plumbago]

I agree with the others that this looks like a positive celiac disease diagnosis (and I didn't really see anything that indicates a weak positive). What I have never seen before is the "celiac cascade." After thinking on what that is for several minutes, I concluded it is an indication of positivity based on the tests. Is that right? I have no idea, can someone explain in clear English or point to a clear web site? Thanks!

Plumbago

[RMJ]

Cascade or reflex testing is where they don't do all the tests at once, but based on initial results the testing may be continued.  It happens in the lab, it is not a case of going back to the doctor for the decision to continue.  For example, when I am tested the lab only does the EMA if the Ttg is positive.  

The test labeled cascade looks like it has a total IgA range.  Perhaps in this cascade they only continue with the IgA antibody tests if the person has a normal total IgA.

Open Original Shared Link

[plumbago]

Thanks RMJ. Can you explain the score of the OP?

[plumbago]

13 hours ago, ironictruth said:

Whatever you do,  run to the store now and eat donuts and bagels. Because I think when your endoscopy is done and over with you're not going to see them again. There are a lot of really good gluten-free cookies, cupcakes, brownies, etc.  Donuts and bagels... not so much.

Hope you feel better soon after you get some answers! 

Actually, gluten-free donuts are the next frontier (in the pre- and post diabetic lifestyle and the standard American diet). There is a gluten-free bakery here in DC that is about to expand and will soon roll out donuts. They already sell bagels which are, IMO, meh. A bagel probably has more than your RDA of carbohydrates in any case. But rest assured, the gluten-free sugar-spikes are coming.

[jenna3]

Thank you for the replies. I am most clueless about the cascade test also. I guess I was just looking for someone to say, 'no, you certainly don't have celiac from these results'. Lol, wishful thinking. 

[RMJ]

4 hours ago, plumbago said:

Thanks RMJ. Can you explain the score of the OP?

I'm not sure what you mean by score, but her testing at the Mayo Clinic looks like what they describe in the Mayo Clinic link I included.  The posted results are in reverse order of the actual testing.

Testing started with total IgA (for some strange reason labeled "Celiac disease, cascade" and does not include units).  It was within the normal range listed in the Mayo link under "Reference Testing" so testing continued with TTG IgA.  Jenna3, the total IgA is to ensure that the results of the rest of the IgA  tests are valid.  It is looking at total IgA antibody, not celiac antibodies.

TTG IgA was a weak positive so testing continued with EMA IgA and Gliadin IgA which per the Mayo website is the deamidated gliadin peptides.  It looks like there should be an EMA titer reported.

Hope this helps.

[Gemini]

With the 3 positives that you have, Jenna, you have Celiac Disease. Positive tTg and EMA is a slam dunk. At this point, if you do the biopsy, you don't need it for diagnosis.  It will be to check for extent of damage.  Considering your health issues, it's pretty apparent you have a gluten problem anyway.

Congratulations on figuring out your problem.  Now you can sit back and watch how amazing it will be when many of your problems resolve or improve dramatically. I had the same positives you did and declined the biopsy. 3 years after I was diagnosed, all my symptoms were gone but I do have other AI issues which are not, but they are much, much better just from going gluten free.  Be optimistic this will happen for you also!

[plumbago]

If you go back and look at the Celiac cascade panel, it gives a value. That's what I meant by score.

[squirmingitch]

On 6/23/2017 at 2:09 PM, jenna3 said:

I am not so concerned about having to cut gluten as I am hoping that this may finally make me feel human again.

jenna3, you are going to feel human again!!!

Do not stop eating gluten until all testing is done & over with. Have a gluten glutton fest.  As soon as all testing is finished, then go strict gluten free. Read our newbie 101 in the link below. It will tell you how to keep yourself safe. You'll need to get some new kitchen items and do a lot of cleaning out of drawers etc...

 

[RMJ]

3 hours ago, plumbago said:

If you go back and look at the Celiac cascade panel, it gives a value. That's what I meant by score.

That value/score is a very, very strange way of reporting total IgA!

[jenna3]

Thank you everyone! I had my initial visit with a gastro doctor. He feels like there is still a chance I don't have Celiac, I think he felt the numbers weren't obviously off the charts. But I just know how to connect all the dots and it just makes sense. I think I also may have an ulcer that is causing the gnawing pain near where my gallbladder used to be. I think that it is highly probable the celiac disease destroyed my thyroid in my twenties, my gallbladder 2 years ago, and now my gut is destroyed. I will be interested to know if my vitiligo improves once I am gluten free. The doctor did prescribe my Questran for the loose stools he feels are related to bile from my gallbladder removal. It has helped stop me up, but stomach pain is at an all time high.

I feel like my mother may have had this disease and was never diagnosed. I am so sad, I lost her in March at the age of 62. She went to take a nap one day and did not wake up. She suffered terribly with stomach issues, high blood pressure, headaches, anxiety. I tried to explain to my brothers that they may have this and one of them barked back that it is just a myth or trend to have gluten intolerance. "No one is allergic to wheat". Ah, such ignorance.

I have my endoscopy scheduled for Wednesday. Cost me $625 out of pocket as I haven't met my deductible yet. Will update you all when I get results!

[cyclinglady]

I am not a betting woman (unless Gemini is with me), but with thyroid, a removed gallbladder, and elevated celiac antibodies, chances are you have celiac disease.  The endoscopy will confirm aand convince your doctor.  Guess what?  I had a non-functioning gallbladder removed 10 years ago, diagnosed with Hashi's 20 years ago and four years ago, my GI said I had a barely positive celiac antibodies test with no gut issues.  You just never know.......

[cyclinglady]

Make sure your GI takes all the recommended number and placement of the biopsies!!!  My visual was "normal" on the endoscopy, but  the biopsies revealed patches of moderate to severe villi damage.  

[Gemini]

1 minute ago, cyclinglady said:

I am not a betting woman (unless Gemini is with me), but with thyroid, a removed gallbladder, and elevated celiac antibodies, chances are you have celiac disease.  The endoscopy will confirm aand convince your doctor.  Guess what?  I had a non-functioning gallbladder removed 10 years ago, diagnosed with Hashi's 20 years ago and four years ago, my GI said I had a barely positive celiac antibodies test with no gut issues.  You just never know.......

OK...I'll bet on this one because it's a no brainer.    With a positive EMA and tTg, you have Celiac Disease.  I don't what they are teaching these docs today but as no other disease causes a positive EMA except Celiac, what doesn't he get?  Oh, yeah...money from the endo. 

I am sorry you have to pay that much money for the test because you really don't need it.  That just isn't right. With your history you gave, you sound like an advertisement for Celiac. Welcome to the club. We are very lucky people because once we go gluten free and heal, we don't have to listen to docs tell us they have no clue what is wrong with us anymore. You are going to be amazed at how many symptoms and problems were caused by gluten consumption.

I am very sorry about your mother and know how you feel.  My brother died 2 years ago.  He was a Type 1 diabetic who I know had Celiac also.  His doctor was an idiot and he was in denial....a very bad combination.  He died at 60, very suddenly, but that can happen when you have diarrhea for 3 months straight and no one is listening. Don't go crazy trying to convince your brothers to get tested because family can be brutal with regards to this disease. Concentrate on feeling well yourself and that should convince them it is real!

Good luck with the rest of testing but do not doubt you have it....not with that blood work and symptom list! 

[jenna3]

Had my endoscopy this morning. I had the propofol and the procedure was no problem. I have a huge headache now though. These are the initials notes my GI doc took. I don't think he saw any damage to the villi himself. He is going to call me next week after he gets the biopsies back. 

[RMJ]

I hope you get clearcut results.