Can You Have Celiac With Negative Blood Test, But Good Results On Diet?

[Ox on the Roof]

Hi, all! I'm new here but I've been sick for a long time. Hopefully I can make my intro short.

My first symptoms were similar to a panic attack in May 2009. It happened again a month later, then again another month later. Then I went into a constant state of PURE MISERY from late July until December 2009. My symptoms were:

* waking up as if someone had startled me and then feeling that way all day, shaking inside

* no appetite, nausea, TONS of belching (TONS, I say!)

* fatigue

* alternating c and d, mostly d

* muscle aches and pains, sometimes felt like it was in my bones

I could go on and on, but basically I had neuro and gastro symptoms so badly that we had to move in with my in-laws because I couldn't take care of my kids (8,5, and 3...and I homeschool them). During this time period I saw about 10-12 different doctors, if you count all the specialists, nurse practitioners, and even a psychiatrist. No one seemed to be able to help me. My GP, who was running the show, would not get off of the anxiety kick and kept bouncing me on and off of six different anti-depressants and anti-anxiety meds, which only made me feel worse. And the GI tried me on about six or eight different meds, too, with no help.

FINALLY, in December, I found a great Endocrinologist who actually listened. She is the one who discovered that I was deficient in B12 and vitamin D. After starting B12 injections and huge doses of oral vitamin D, the neuro symptoms began to disappear. But the gastro stuff continued. My gallbladder was finally tested and showed that it was only ejecting at 11%, so they took it out, but I was still sick.

I finally went back to the GI again last week. He wanted to prescribe Elavil (another anti-anxiety med). I came away SO FRUSTRATED and decided to do some more research. I knew I'd been tested for Celiac, but didn't know much more about it. So the day before Thanksgiving, I went gluten-free. TOTALLY. Thanksgiving is a crazy time to start that strict of a diet!

Now, a week later, I feel better. I still feel fatigued, but the nausea/loss of appetite/belching has improved more than I had hoped for, considering the short amount of time I've been gluten-free. Today I drove around and got the previous lab results:

10/13/2009 (last year)

Reticulin IgA Autoabs - Reference Range <1:10 - Result <1:10

Endomysial IgA Autoabs - Reference Range <1:10 - Result <1:10

Gliadin IgG Abs - Reference Range <10.0 - Result <10.0

Gliadin IgA Abs - Reference Range <5.0 - Result <5.0

I am assuming that this lab just gives a "negative" or a "positive."

11/16/2010 (two weeks ago...I had tried gluten-free for four days prior, but had eaten toast for breakfast; I have no idea if this skews the results?)

Gliadin AB IgA, Deamidated - Value 1 - Reference Range <20 units

Gliadin AB IgG, Deamidated - Value 2 - Reference Range <20 units

This is also confusing to me. Is the "value" the same as "units?" If so, I guess the IgA would be 1 unit, and the IgG would be 2 units? That seems strange. I can find no other numbers or notes on the page that indicate a different number of units.

I am aware that blood tests aren't 100% reliable, and again, I don't know if I skewed the results by eating gluten-free for a few days. Ironically, just two weeks before that first test was performed, I had an EGD. But the doctor did not go all the way to my small intestine and only biopsied my esophagus.

Well, I ended up writing a novel after all. If anyone gets this far, I would appreciate any help or advice you can give. I don't know if I should just keep going gluten-free, or pursue more/different lab work, or have another EGD (although I am paying so many medical bills already, and Christmas is coming). Thanks!

[Dixiebell]

Welcome!

"Can You Have Celiac With Negative Blood Test, But Good Results On Diet?"

I believe that you can. My sons tests were negative but he has improved so much since eating gluten free/dairy free. My test was negative too but I wanted to eat gluten-free with him so he would not feel too different and to see how it might help me. It has helped me too. Depression, anxiety, fatigue, low vit D, muscle and bone aches, headaches and sinus problems are all gone now.

It appears you have had testing done so the next step would be to trial gluten-free for three months and see if you think it helps and if you want, after the three months, you could try gluten foods again and see if it bothers you.

[notme]

my dr. said all my tests were negative - celiac panel, biopsies, etc. but i had already been gluten free for 2 months, and she expected they would be negative. but in the endoscopy she noted flattening of duodenal folds which is indicative of celiac disease. otherwise, i am confident in the success i have had with the gluten free diet. nothing has ever made such a huge difference in my quality of life and the way i feel!! nice to have symptoms disappear: goodbye anxiety, goodbye constant D, goodbye horrible skin rash, goodbye fatigue, goodbye muscle aches, goodbye nasty headaches......

[Skylark]

10/13/2009 (last year)

Reticulin IgA Autoabs - Reference Range <1:10 - Result <1:10

Endomysial IgA Autoabs - Reference Range <1:10 - Result <1:10

Gliadin IgG Abs - Reference Range <10.0 - Result <10.0

Gliadin IgA Abs - Reference Range <5.0 - Result <5.0

I am assuming that this lab just gives a "negative" or a "positive."

11/16/2010 (two weeks ago...I had tried gluten-free for four days prior, but had eaten toast for breakfast; I have no idea if this skews the results?)

Gliadin AB IgA, Deamidated - Value 1 - Reference Range <20 units

Gliadin AB IgG, Deamidated - Value 2 - Reference Range <20 units

This is also confusing to me. Is the "value" the same as "units?" If so, I guess the IgA would be 1 unit, and the IgG would be 2 units? That seems strange. I can find no other numbers or notes on the page that indicate a different number of units.

Your first labs are definitely negative. The second looks like a computer glitch. Value 1 and Value 2 should be YOUR numbers and it looks like the computer didn't fill them in. Are they somewhere else on the page? I think you need to ask your doctor for the actual numbers. That is a new, very sensitive test and four days gluten-free will not skew it.

It's possible to get quite sick from gluten without being celiac. Give the diet a good, strict try for 3 or 4 months and see how you feel.

[Ox on the Roof]

Thank you ALL for your replies. It's just so nice to have someone, ANYONE, understand what it's like to be sick for a long time with no answers. And all the testing (anyone have that arm-shocking test for neuropathy??!?!) and meds really get you down.

Skylark, the way it is laid out on the page is like this:

Value Reference Range

Gliadin AB IgA, Deamidated 1 <20 Units

Gliadin AB IgG, Deamidated 2 <20 Units

Does that make any difference? I do not see any other numbers on the page, other than things like "<20 = negative, 20-whatever = weak positive," etc.

So far I have been VERY strict and have already seen results. I am hoping that at the one year mark next Thanksgiving, I will have something to be EXTREMELY thankful for (beyond all my other blessings, of course).

[sandsurfgirl]

Some doctors will take dietary response as a diagnostic tool. In my opinion based on my own experience and the experiences of so many on here, and just plain common sense, if gluten makes you sick, then you have celiac disease. The tests are the problem. They aren't sensitive enough. I only came up positive on one out of the five and I was close to debilitated with symptoms. Wolicki weighed 97 pounds at diagnosis and thought she was going to die yet only one of the 5 blood tests came up positive. There are others on here.

I don't believe in gluten intolerance or any of that. If gluten makes you sick, your body is having an autoimmune reaction and you have celiac. That is my opinion. Others may disagree BUT... here's the IMPORTANT part. If you want peace in your life and you don't want hassles with friends and family tell them you have celiac disease and do NOT tell them about your test results. People don't understand and they will try to undermine your gluten free diet.

Nobody is going to check your medical records and they don't really care to hear all the details anyway.

Welcome to the greatest club you never wanted to join!!

[mushroom]

Sandsurfgirl, you rock! I think you have put the hammer squarely on the head of the nail. Everyone p%$#@#foots around this issue, but the tests for celiac diease only test what they test for, the specific blood antibodies, and the specific gut manifestations of the gluten intolerance called celiac disease. We on this forum know that gluten intolerance takes many other forms, most of which can only be tested for in their end manifestation of other autoimmune diseases. Tell your friends and family you have celiac disease -- more of them will understand and respect that than anything else you will say, since it is the only official medical manifestation of gluten intolerance. It is only a tiny fib to say this, because if the medical profession knew more about this condition they would have other labels and other symptoms to incorporate into the condition, and other tests to test for it. We, unfortunately, are on the leading front of a disease yet to be defined, so we must define it for ourselves the best way we know how to get the respect it, and we, deserve.

[Skylark]

Skylark, the way it is laid out on the page is like this:

Value Reference Range

Gliadin AB IgA, Deamidated 1 <20 Units

Gliadin AB IgG, Deamidated 2 <20 Units

Does that make any difference? I do not see any other numbers on the page, other than things like "<20 = negative, 20-whatever = weak positive," etc.

That makes a lot more sense. Your test values were very low, only 1 unit and 2 units, with anything below 20 being negative. That means they are definitely negative. It's good that you don't have severe enough autoimmunity to give positive tests.

I really hope the diet helps you out! I used to get that startled, shaking inside feeling so I know how awful it is. Now that I'm healed it only happens if I'm glutened.

[ravenwoodglass]

When I went to my new GI doctor a couple of years ago I asked him about the tests. I had been blood tested over and over and always came back negative. The GI said that some of us just don't show up in blood tests and I would have been "one of those celiacs diagnosed by autopsy". He said he always tells folks that have negative tests, including the endo, that have strong symptoms to give the diet a good strict try after testing is done. As he stated then, and I already knew, the response to the diet is the most accurate test there is. I really wish my old GI had that mindset. He and other doctors just looked at my bloodwork and said nope you don't have it here's a script for prozac. I wish I had just one of all those doctors tell me to try the diet just once in all the miserable years. My life would have been so different if they had. If you have good results on the diet stay on it. Your body is giving you the answer that testing cannot.

[Marz]

My first symptoms were similar to a panic attack in May 2009. It happened again a month later, then again another month later. Then I went into a constant state of PURE MISERY from late July until December 2009. My symptoms were:

* waking up as if someone had startled me and then feeling that way all day, shaking inside

* no appetite, nausea, TONS of belching (TONS, I say!)

* fatigue

* alternating c and d, mostly d

* muscle aches and pains, sometimes felt like it was in my bones

Hello and welcome!

Boy oh boy, do we share some similar symptoms I also started my severe symptoms this year with panic attacks, nausea, bloating, burping along with the d etc. I couldn't understand why I went from a fairly happy person to a nervous, panicking wreck! One doctor gave me anti-anxiety meds, the other pronounced IBS.

Some blood tests later (all negative), an expensive endoscopy and biopsy (negative), and gluten-free diet later (positive!), I'm feeling so much better I can't believe it. I now only get anxious if I get some gluten accidentally in me.

Don't be too worried if the nausea continues for a few weeks - it takes time for the stomach and intestine to heal. You may also have some food intolerances, so see if certain foods cause more problems for you. Most of the time the intolerances will disappear as you heal.

[Monklady123]

My brief answer is -- if you feel awful while eating gluten, and better -- or even great -- while not eating gluten, then don't eat gluten! If that's the case then you are celiac/gluten intolerant. Like someone said, don't tell people your blood work. Just tell them you've been under a doctor's care (if you even want to say that) and now you're "following the recommended diet" or something like that. Eat in a way that makes you able to function!

[Ox on the Roof]

WOW! Thanks for all the responses!

Wolicki weighed 97 pounds at diagnosis and thought she was going to die yet only one of the 5 blood tests came up positive.

Yes, I went from 135 to 117 in just a couple of months. It would have been worse, but I was forcing myself to eat and willing myself to not throw up. I got good at that from three hyperemesis pregnancies. Ironically, I ate toast EVERY MORNING because I thought it would be calming to my stomach.

He and other doctors just looked at my bloodwork and said nope you don't have it here's a script for prozac.

....and Lexapro, and Xanax, and Zoloft, and Cymbalta, and BuSpar, and Inderol (talk about FATIGUE!), and Elavil. I wish I were joking. It's amazing how a few shots of B12 did what all these meds could not do!

I couldn't understand why I went from a fairly happy person to a nervous, panicking wreck!

I was on a DATE WITH MY HUSBAND, without my kids, when I had that first "panic attack" and headed to the ER. The whole anxiety bit just didn't add up. I am very "type A" and have had periods in my life that were stressful, so why didn't I have anxiety and panic *then?* I've got a blood clotting disorder (Factor V Leiden) so I thought I'd thrown a clot or something! Aaah. I am so glad all that is over...hopefully for good.

As for "fibbing," I have AMAZING family and friends. Last December, a group of men from my church even came and prayed over me. (And amazingly, it was just a few days later when the Endocrinologist found the B12 and D deficiencies which led to much healing!) Everyone is very supportive, albeit slightly under-informed ("So, I don't understand why you can't have soy sauce...it isn't bread..."). And they all know how sick I've been, so if I say I am feeling better, they are happy for me and will support me. Now if only others would be like this, like the lady at the BBQ place who laughed at me when I said I wanted plain BBQ with no bun or sauce.

[Ox on the Roof]

And Skylark, that isn't exactly how it was laid out on the lab sheet. Of course the forum took out the spaces. But apparently this forum is moderated post-by-post and I couldn't stay online to see if it came out right! It seems kind of weird that my values would be "1" and "2," though. I might call the GP and clarify, just to be sure.

[Skylark]

When I hit quote, I saw all the spaces the forum ate. Labs do all sorts of different things. Reporting a 1 and 2 is not unheard of, just a little unusual.

[i-geek]

My blood tests were negative: I was eating a very low gluten diet to make the migraines stop, plus the doctor only tested for TTG IgA and never ran a test for total IgA, so the test might have been invalid anyway. I fully believe that I have celiac disease and have no problem telling others that. The majority of my parents' siblings (on both sides) have some form of autoimmune disease, my mom has always had nutrient malabsorption problems, and my dad often has problems digesting high-gluten foods. Plus, the symptoms lined up really well with celiac disease, I got immediate relief from headaches and fatigue on the gluten-free diet, and the GI stuff eased up over a few months in a manner consistent with healing villi and the repair of leaky gut (i.e. I regained the ability to digest lactose-containing foods and several other new food intolerances eased up).

[srall]

Well, I think you got your answer. I was just going to say "Yes"

To me your sickness during pregnancy is a sign of celiac too. I have been amazed that so many women on this board who were not diagnosed during a pregnancy were sick the entire time like me.

I went gluten free last March, and in May took a blood test which was negative. Too me it didn't matter if I wasn't "technically" celiac, I had experienced the life changing results and I wasn't going back for nothin'

Now that some time has passed I find myself wondering if it was really as bad as I thought, and maybe I'm remembering the gluten days as worse than they actually were, except now I'm going through all these issues with my own child and once again I am amazed at how food and vitamins effect everything.

[mbrookes]

My 3 blood tests were negative, positive and indeterminate. Fortunately, my GI didn't like that and did the endoscopy. Waaay positive. Going gluten free has saved my life. I am the person I used to be, and I like me much better. So does everyone else.