Can I Really Have A Diagnosis Of Celiac's Already? Lots Of Questions - Please Help!

[Momto2Boys]

Hi everyone!

I'm going to try to give you a brief summary of what's been going on and see what ya'll think my next steps should be.

I had a severe gallbladder (?) attack in January that put me in the ER (I am NOT an ER person). I was in so much pain - RUQ. Ultrasound was negative and after the ultrasound I actually felt better and they sent me home. Next days some pain but not as bad. Then fine. This happened to be on the second day of my menstrual cycle.

Fast forward a month - same symptoms on the second day of my cycle - only less severe (when it doesn't hurt a lot it feels like a running stitch). Is happening with every menstrual cycle and going from annoying to really hurting over the months - getting worse.

Did not have a primary care physician so started seeing a new one (she is a D.O. and likes more "natural" solutions). She did a Celiac panel, CMP, lipid, Vitamin D. She also asked me if I wanted to do the Immunolabs testing - the 115 foods, gluten, and candida tests. I decided to do those. In the meantime she had me to a colon cleanse (Clean Start by Nature's Sunshine) and then start a liver cleanse.

In the meantime, I followed up with my GYN since my symptoms were primarily during my period (though in the later months started having them when I was ovulating and now just having them in general but worse around period). She has ordered an abdominal as well as pelvic ultrasound (had some pain during the pelvic exam so she just wanted to get an u/s of everything - cysts?). I have not had those yet. She wants to wait until I'm going to be in pain (my cycle) so we have it scheduled for around then.

Well, TODAY, I got a call from my doctor that she wanted to go over my lab results (the Immunolab ones aren't back yet).

She didn't give me the sheet with the Deamidated Gliadin Abs, IgA and Deamidated Gliadin Abs, IgG results - but I see they were done and since she didn't mention them I am guessing they were normal.

We did look at:

t-Transglutaminase (tTG) IgA and t-Transglutaminase (tTG) IgG. The tTg IgA was normal - 0.6. and the tTG was 7 (weak positive = 6-9). With just that she informs me that I have Celiac's Disease. What? Seriously? Don't you have to have a biopsy to confirm that? And even if not, it seems like my other levels should be high? They did not do a total IgA though I have no reason to believe it wouldn't be normal. I am otherwise a healthy female - 35 years old.

My other symptoms that may lend to Celiac's or maybe just gluten intolerance??? are that I now have some pains when I eat, especially gallbladder spasms and the bloating - omigosh - the BLOATING! Again, these are worse right before my menstrual cycle which makes sense, but sometimes I look pregnant. The bloating and having pains more often have gotten worse over the last nine months. The only other thing I have noticed is some tingling in my hands every now and then.

In a way, it would be nice to have an answer, but it seems to easy of a diagnosis to just slap on there. Before all of this, I had no GI symptoms or any other symptoms. Can Celiac's or gluten sensitivity develop that quickly?

Things that will give more answers: Immunolabs results and ultrasound. But what should my next steps be? Find a gastroenterologist? I guess those results will help determine that. In the meantime, go gluten free? My doctor is very pro-gluten free in general so I felt like she was almost happy to give me this diagnosis.

Maybe I'm in denial, but something seems off to me. Any advice much appreciated.

Thanks for listening!

K

[sa1937]

Well, TODAY, I got a call from my doctor that she wanted to go over my lab results (the Immunolab ones aren't back yet).

She didn't give me the sheet with the Deamidated Gliadin Abs, IgA and Deamidated Gliadin Abs, IgG results - but I see they were done and since she didn't mention them I am guessing they were normal.

Sorry that I can't be of much help in answering your questions but there are some very knowledgeable people here that I'm sure will be able to help you more.

We can never assume anything is normal just because a doctor doesn't mention it. You are entitled to and need to get copies of all your lab results. My doctors already know I want copies of any and all tests results and I have no problems getting them. I keep them in a file folder for future reference.

[Lisa]

Open Original Shared Link

What are the recommended blood tests to diagnose celiac disease?

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

The presence of tTG antibodies is highly suggestive of celiac disease, while AGA can be elevated also in cases of wheat allergy.

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How accurate are the celiac blood tests?

The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present.

At this point, you have choices. You can continue to consume gluten and schedule an endoscopy/biopsy exam for further confirmation. But, please note that at times they may not be as accurate due to the extensiveness of the small intestines.

Or, you can study hard and completely remove gluten (and dairy initially) from your system. Positive dietary response can support the diagnosis as well.

[Skylark]

Without total IgA, your results are not interpretable. If you're IgA deficient and feel better off gluten you're probably celiac. If you're normal total IgA, you would need a biopsy to confirm the diagnosis.

You cannot get an accurate biopsy gluten-free, so keep that in mind if you try the diet. Another thing to remember is that if you haven't been celiac for long, blood levels of antibodies may be low and your biopsy may not be very abnormal.

Celiac can definitely come on quickly. Often but not always there is a triggering event like an accident, illness, or pregnancy.

[sb2178]

Well, you're symptomatic. I'd definitely consider either a positive response to a gluten free diet or a biopsy to be diagnostic with blood work. Your pick-- the diet is annoying and irritating at first, but being symptom free is wonderful. You have to stick to it for a good while: at least three weeks and preferably for 6-12 weeks. Taking dairy out as well may be wise.

The biopsy may or may not show damage. Be sure they take plenty of samples. It's not a terrible procedure, but it may be $$ depending on your insurance. If you need some additional data to wrap your brain around it, not a bad idea. Talking to nutritionist may also be helpful if you're overwhelmed by the meal planning aspects.

There is also no reason to not continue looking at other potential problems-- I mean, there is the chance that the gluten thing is not the primary problem or even what is causing your issues. BUT, given the result of the TTG, I would have it rechecked regularly in case you do develop full blown celiac disease. If you are just developing it, your results may be 100 in a year if you keep eating gluten. or maybe not.

[MelindaLee]

I don't know much about the blood test and such, but I can tell you my celiac was dx when they were testing my gallbladder as well. I was having pain in the center/right side of my ribs. Everytime I ate, it seemed that someone had their fist under my ribs (right about where your gallbladder is) so I assumed it was my gallbladder. When they did the endoscopy to rule out any stomach/intestinal issues, they found the celiac on the biopsy. They followed up with the blood test, which was positive. My gallbladder still had to come out due to the extreme swelling of it...but I feel much better on the gluten-free diet.

I wonder too...do you eat differently when it's around the time of your period? Monthly cravings can change our diet. Is there any possibility a food could be irritating your gallbladder at that time? Just curious.

I will also tell you that I didn't think I had GI symptoms of Celiac. But I was dumb and ate a handful of Reeses Pieces yesterday and I can definately feel the difference. Before I wouldn't have realized the symptoms were related as I am fortunate and don't have extreme reactions. Hope you get your answers.

[T.H.]

I think one thing that may be confusing is the idea that celiac symptoms have to be gut problems. That was the original belief, but they now know that many celiacs have silent celiac disease - the disease with no gut symptoms, or few of them.

Myself, I likely had celiac disease for 22 years - never had gut symptoms ever. What i did have was a myriad of other health problems that were caused by my constantly being low in nutrients and being immuno-compromised as my body attacked itself. I had tingling and neuro issues, many low-level soft tissue injuries, got sick often, healed slowly, depression, a whole host of things.

The positive blood test is pretty specific, but you are correct in that a biopsy is considered the definitive test for celiac disease. However, many doctors will diagnose based on symptoms plus a positive blood test. False negatives are much more common than false positives.

One of the reasons they do a panel rather than one blood test, as I understand it, is that it's not unusual for one test to look normal, even you actually have celiac disease. Having the range of tests means that you can see if any of them are positive. The big problem is that the tests are just detecting how much our bodies are reacting to the problem, and all bodies react differently, you know? Kind of like if a doc was asking questions about a flu. You might have a cough, or a fever, or chills and bones aching, or all three. But just because you lack one or more of the symptoms doesn't mean you are well, if that makes sense?

The total IgA test can make a difference because celiacs have a higher prevalence of IgA deficiency than the general population, which would make the t-TG- IgA test look like it had lower levels (within normal range, in other words).

You asked: Can Celiac's or gluten sensitivity develop that quickly?

Yup. They believe it triggers, and once that happens, it can go downhill fast. Or it can be something you have for years and things slowly get worse - unseen - until everything seems to snowball.

However, all that said? One of your statements gives me pause: My doctor is very pro-gluten free in general so I felt like she was almost happy to give me this diagnosis.

If you don't feel like you can trust her completely, I would say definitely get another doctor to look at the results, give you their opinion. If there is one thing I've been learning since being diagnosed, it's to trust my gut when it comes to doctors. Doesn't sound like you feel as though this one is interpreting your results with an unbiased mind, so I'd trust yourself, ya know?

Good luck - hoping you find your answers soon!

[SaraKat]

I am 35 also and I was just dx'd 2 weeks ago. I wasn't having GI symptoms at all. I was just having really bad left sided pain just under my rib cage (starting in Oct 2009, prior to that I thought I was super healthy). I have always been anemic too, never figured that one out until now.

I had the TTG IGA test and the total serum IGA. The TTG IGA was positive (38) and the total IGA was normal. I also had the biopsy done and he told me he saw some "scalloping" of my intestinal wall. I go back to see him 9/17 for the full report.

I would have NEVER suspected celiac (mainly b/c of the lack of GI issues). I had barely even heard of it when the rheumatologist tested for it.

I get bloated before my period too, I don't think that has anything to do with celiac?

I was told by my Dr that the endoscopy is the gold standard for diagnosing celiac. So, I had it done.

[Momto2Boys]

Thanks, everyone! You are all wonderful! I appreciate all the posts. I'm such a newbie to this. I had a very different picture in my mind of what Celiac's SHOULD be. . .but apparently there is a much broader spectrum than the "typical" (if one even exists) patient.

Regarding trusting my doctor - she is a new doctor (to me not to practicing) so I don't know her all that well. It's not that I don't trust her, it's just my first experience with her (I've seen her twice). This may be the way she does things OR maybe since my level was high maybe she feels that gluten free is beneificial regardless of diagnosis. When I questioned the low TTG IGA she stated that it is just a different way to look at it (though really if I'm IGA deficient - that would explain it but she didn't mention this or test this). Then I questioned the "weak positive" result and she stated having Celiac's is like being pregnant, you either are or your aren't.

Part of me wants a second opinion and to go through with a biopsy for a definitive diagnosis and part of me just figures that regardless of what it's called I need to not eat gluten. May be partially in denial too ;-)

A friend of mine stated that she had a "positive Celiac test" (though she doesn't have the actual paperwork handy right now as she is in the middle of a move). So she did have the biopsy done and it was negative. They ended up just diagnosing her with a wheat allergy. It makes her very sick but she can do white bread, flour tortillas etc. as long as no wheat. So I'm very curious what her "positive test" showed.

I have called and asked for the the other page of lab results I'm missing.

Why do you recommend to cut out dairy too? I don't know that I can do that too at this point. It seems even more depressing to me.

I don't think I eat that differently around my period but I may not have paid as much attention as I should.

SaraKat - so a rheumatologist diagnosed you?

Will post back when I get my other results. Thanks so much for all the advice and insight!!

[psawyer]

Why do you recommend to cut out dairy too? I don't know that I can do that too at this point. It seems even more depressing to me.

If you have damaged villi, your ability to digest dairy is compromised. Lactase, the enzyme needed to digest lactose, the sugar in milk, is produced by the villi. Until the villi heal, you will be lactase deficient, and thus lactose intolerant. The symptoms of lactose intolerance can mimic those of celiac disease: bloating, diarrhea, gas, cramps, etc.

If this is the case, then once the villi heal you will probably be able to tolerate lactose again.

Some of us have an intolerance to casein (milk protein). In that case, it has nothing to do with a lactase deficiency, and is likely permanent.

[Skylark]

Some of us have an intolerance to casein (milk protein). In that case, it has nothing to do with a lactase deficiency, and is likely permanent.

I'm happy to say that not all casein intolerance is permanent. After about a year eating gluten-free I could tolerate casein again.

My best guess from medical literature is that people with damaged villi only partially digest some proteins like soy and casein. Bits of allergenic peptides leak through the damaged intestinal epithelium and there are studies showing that celiacs have more food antibodies in general. With healing, digestion gets better and the intestinal wall becomes less permeable so we stop reacting.

[ravenwoodglass]

Then I questioned the "weak positive" result and she stated having Celiac's is like being pregnant, you either are or your aren't.

A friend of mine stated that she had a "positive Celiac test" (though she doesn't have the actual paperwork handy right now as she is in the middle of a move). So she did have the biopsy done and it was negative. They ended up just diagnosing her with a wheat allergy. It makes her very sick but she can do white bread, flour tortillas etc. as long as no wheat. So I'm very curious what her "positive test" showed.

Your doctor is right about the weak positive. Many here use the pregnacy comparison. You are or you aren't, there is no such thing as being a 'little bit' Celiac, however a weak positive can diagnose you before your damage gets so severe that there is no coming back as far as destruction to other organs.

As far as your freind goes, I have to wonder if she had a false negative on the biopsy, that is not uncommon. She also needs to know that if she is eating regular white bread and flour tortillas she is eating wheat.

If you are going to choose to biopsy be aware that false negatives are seen all to often. There are folks who have positive blood tests and negative panels are told to go ahead and eat wheat and come back in a year to rebiopsy and see if the damage is severe enough to be easily found yet. Some doctors also don't recognize the changes that come before full villi destruction. If you do choose to biopsy make sure you continue to eat gluten until the test is done and then go gluten free as soon as the test is done. You don't need to wait for the results.

[Skylark]

Better doctors call folks with positive bloodwork and a negative biopsy "latent celiac". The idea is they're somewhere along the path to developing full-blown celiac. Wheat is a bad idea for latent celiacs, as many who have been followed in studies do develop the intestinal damage and malabsorption.

[Momto2Boys]

Update: Had my abdominal and pelvic ultrasound done - everything normal from that end.

Had my period and had symptoms again this month. Maybe a little less (wishful thinking maybe). Have been gluten free for a week (only several days when my cycle started) - so that obviously would need more time.

Have made an appt with a GI doc that specializes in Celiac so I can get a second opinion and find out for sure what is going on. Appt in October. I plan to stay gluten free for now. I realize that would make detection through intestinal biopsy negative, but I want to see if it works. If he wants me too, I'll eat gluten again and then have the test. Won't know until I have an appt.

Still awaiting Immunolab testing - have no idea how those will correlate with my already drawn blood work.

Regarding my friend - she can eat bread products, etc with no problem and drink beer with no problem as long as she doesn't eat whole wheat. She gets SO sick from that. So what would the actually allergy/intolerance be to then?

Thanks everyone!

[Momto2Boys]

OK - got other lab tests:

Gliadin AB, deamidated IGG - 1.5

Gliadin AB, deamidated IGA - 2.4

Both normal. Anyone use Immunolabs? My doctor had me do that too (at the same time as this bloodwork) - one of the tests is for gluten, but I not sure how exactly they test. Curious if anyone has had both too. Should get my results soon.

Thanks!

[Takala]

Regarding my friend - she can eat bread products, etc with no problem and drink beer with no problem as long as she doesn't eat whole wheat. She gets SO sick from that. So what would the actually allergy/intolerance be to then?

Thanks everyone!

[Momto2Boys]

Regarding my friend - she can eat bread products, etc with no problem and drink beer with no problem as long as she doesn't eat whole wheat. She gets SO sick from that. So what would the actually allergy/intolerance be to then?

Thanks everyone!

_______________

Since you said she said she had a positive Celiac blood panel test, uhm, allergy to self acceptance, aka,

"Celiac In Denial?"

[Skylark]

Her doctor told her it wasn't Celiac??? AND she CAN eat those foods (minus whole wheat) without issue but gets REALLY sick if she eats whole wheat or if there is wheat gluten in a product.

Without knowing the actual tests your friend had, we really can't speculate as to why she seems to tolerate wheat in some forms and not others. I sincerely hope she does not develop full-blown celiac and come to regret eating flour.