Negative Serology - Disappointed

[lesliev523]

My test results came in today. I had a Celiac Cascade done, but it looks like only two tests were run.

IgA, S 137 mg.dL 61-356

tTG <1.2 Reference rangL <4.0(negative) unit: U/mL

So the nurse called and said I didn't have Celiac. So I said, then where do we go from here? She had no clue. She was going to ask the doctor if she wanted to see me again.

I am so sick of feeling sick!!! I was really hoping this would give me an answer. O

[Metoo]

My test results came in today. I had a Celiac Cascade done, but it looks like only two tests were run.

IgA, S 137 mg.dL 61-356

tTG <1.2 Reference rangL <4.0(negative) unit: U/mL

So the nurse called and said I didn't have Celiac. So I said, then where do we go from here? She had no clue. She was going to ask the doctor if she wanted to see me again.

I am so sick of feeling sick!!! I was really hoping this would give me an answer. O

For me the answer was to just go gluten free. I was tired of feeling the way I did, the doctor suggested I kept a food journal for 3 months and they would consider the endoscope. I just couldn't take it, I figured if I stuck out gluten free for 3 months and see how I felt. I felt AWESOME within 4 weeks, I knew that I had a gluten problem. I am 6 months gluten free now and I can't imagine going back (I break out in a rash now if I have any gluten!).

Do you can just give the diet a try, you will never have an official diagnosis then...or you can go to another doctor, ask for a more thourgh blood test, and ask about the scope.

[lesliev523]

For me the answer was to just go gluten free. I was tired of feeling the way I did, the doctor suggested I kept a food journal for 3 months and they would consider the endoscope. I just couldn't take it, I figured if I stuck out gluten free for 3 months and see how I felt. I felt AWESOME within 4 weeks, I knew that I had a gluten problem. I am 6 months gluten free now and I can't imagine going back (I break out in a rash now if I have any gluten!).

Do you can just give the diet a try, you will never have an official diagnosis then...or you can go to another doctor, ask for a more thourgh blood test, and ask about the scope.

I just don't think I have the energy to go to another doctor. I had significantly reduced my gluten intake, about six months ago and I did feel better. Then I just started to get lazy, and not paying attention to it.

My concern is that my friends and family will not take me seriously unless I say that I was diagnosed. My mom told me that outright. So.... can I lie? I really think I will feel significantly better if I go gluten free, if six months ago was a indication. But when I did it before, I had SO MUCH push back from my family.

[lesliev523]

I will add that I have had significant medical issues over the last two years.

May 2010 - Appendix out

Dec 2010 - three months with pneumonia

June -Sept 2011 - Polyps and sludge in gall bladder - eventually removed

I have had horrible issues with constipation alternating with diarrhea for my entire life.

Since my gall bladder surgery I have been extremely fatigued. I have struggled with joint pain my whole life, but it seems to be worse than ever in the last few months. I have developed neuropathy in my fingertips. And over the last three months I am getting frequent fevers.

My doctor found I was vitamin D and B deficient. But she doesn't seem to take any other symptoms seriously. I am 38 and a single mom to two boys..... I can't be sick!

[IrishHeart]

Since an estimated 30% of Celiacs test negative on blood work (I am one of them ), there can be no real conclusions drawn here. Plus, you said you had "significantly reduced your gluten intake".

That will affect the accuracy of testing.

The real question is: How do you feel OFF gluten? And I don't mean "significantly reduced" intake. I mean NO gluten for a few months? If you feel GREAT, that is your answer.

You can still be gluten sensitive and not be a Celiac. There is just no test for it. There is scientific research that proves this is "real", if you really feel you need to justify your choices to your family and feel healthy. Dr. Fasano has written a few articles if you want to have some "proof". And neuropathy and vitamin deficiencies are not to be ignored!

And frankly, what do you care what others think?

Isn't your health more important?

You get "push back" from your family?--well, push back!

If I had kept listening to what others said (doctors, test results, nay-sayers) I'd probably be dead by now. I do have Celiac, and my GI doctor does not understand how the hell I was not DXed 35 years ago, but I had several doctors tell me "that's not it".

Mine started with gall bladder disease and went drastically downhill from there. You do not want to go where I went, believe me.

Listen to your gut!! Literally and figuratively.

[Takala]

You're a sero-negative gluten intolerant. Welcome to the club.

I had advanced neuropathy, spinal damage from bone loss that showed up clearly on mere x rays, chronic kidney problems, and bright spots in my brain, and a neuro from hell

[lesliev523]

Thanks you guys! When I went off of gluten, shortly after my gall bladder surgery, I felt SIGNIFICANTLY better. But I gave in to the pressure that others gave me, and eventually gluten binged. I didn't have as significant reaction as I thought I might, so I decided just to go "gluten light". Meaning... no bread, pasta, beer, crackers. But that was about it. I didn't search for gluten to cut out, I just cut out the big stuff. But then over the last three months (since New years), I have been eating a piece of bread here or there, or pasta. And ironically, that is when everything started to get really bad. I didn't have the significant diarrhea or constipation. But my joints, my fevers, even my seasonal allergies started to spiral downhill. The chronic fatigue set in. I forgot to mention that I have a hard time with balance, and get dizzy.

So... I am going to commit to going off of gluten in its entirety. I think it is the only way I will know.

[frieze]

Thanks you guys! When I went off of gluten, shortly after my gall bladder surgery, I felt SIGNIFICANTLY better. But I gave in to the pressure that others gave me, and eventually gluten binged. I didn't have as significant reaction as I thought I might, so I decided just to go "gluten light". Meaning... no bread, pasta, beer, crackers. But that was about it. I didn't search for gluten to cut out, I just cut out the big stuff. But then over the last three months (since New years), I have been eating a piece of bread here or there, or pasta. And ironically, that is when everything started to get really bad. I didn't have the significant diarrhea or constipation. But my joints, my fevers, even my seasonal allergies started to spiral downhill. The chronic fatigue set in. I forgot to mention that I have a hard time with balance, and get dizzy.

So... I am going to commit to going off of gluten in its entirety. I think it is the only way I will know.

inre: mother, you need to tell her, politely but firmly, that she can take a long walk off short pier. Do not look to her for validation.

[Cara in Boston]

Just want to add - you really didn't get adequate testing to even say you tested negative. They only did one test. My son tested negative on the TTgIgA test too (and all IgA tests) but was found to have extensive intestinal damage. He is doing GREAT gluten free.

The doctor that administered the test clearly does not understand Celiac Disease. Your symptoms all add up - If you feel like you need a diagnosis, find a new, better informed doctor.

Cara

[lesliev523]

Just want to add - you really didn't get adequate testing to even say you tested negative. They only did one test. My son tested negative on the TTgIgA test too (and all IgA tests) but was found to have extensive intestinal damage. He is doing GREAT gluten free.

The doctor that administered the test clearly does not understand Celiac Disease. Your symptoms all add up - If you feel like you need a diagnosis, find a new, better informed doctor.

Cara

That is what I was thinking, because of other peoples posts here. Should I try to go straight to a GI? Or should I go to a different GP? I just don't know if a GI will accept me without a referral.

Honestly, I want to go to a different doctor period. And never go to this one again.

[beachbirdie]

My test results came in today. I had a Celiac Cascade done, but it looks like only two tests were run.

IgA, S 137 mg.dL 61-356

tTG <1.2 Reference rangL <4.0(negative) unit: U/mL

So the nurse called and said I didn't have Celiac. So I said, then where do we go from here? She had no clue. She was going to ask the doctor if she wanted to see me again.

I am so sick of feeling sick!!! I was really hoping this would give me an answer. O

As others have said, you did not receive adequate testing. There are several tests they should have done, I am very much opposed to the "cascade" method. They miss a lot of people that way and cause so much unnecessary cost and suffering! I just got testing that had me in a similar situation to Cara's child, my only positive test is one that doesn't usually get done...the TtG IgG. I have one of the low risk (not NO risk!) genes, and am now debating getting the scope. I'm unsure of how to approach a doctor, since I got my tests outside of a doctor's control.

If you don't want to have more doctors involved and you can afford it, you can get more tests without the cascade through something like Open Original Shared Link or Open Original Shared Link.

There is another patient-directed service but I keep getting a message that their site is down. It is ineedlabs.com. They were the least expensive but they've been down for quite a while.

Healthcheckusa is the next least expensive, that's the one I used. They send you to a Labcorp facility for blood draw.

Of course, you don't need labs or permission to get on a gluten-free diet. I do understand the issue with family, my husband is one who can be a little bit difficult about stuff like this, not believing there is really a problem if a doctor didn't say so.

[lesliev523]

Thanks for everyone's support. I called my doctors office and asked for a referral to a GI. But I have to wait for my doctor to get back on Monday now to see if she agrees. How dumb! But I did have a long conversation with the nurse, and she was the first one to seem sympathetic to my issues. My doctor just seems annoyed with me. It is frustrating! I told the nurse I was going to just stop with gluten all together, and she I may want to wait to see if they could get me a referral on Monday.

I am just so sick of feeling sick.

[Ninja]

I assume that you have or are going to start supplementing for those vitamin deficiencies? Both are super important, however the B's (specifically b12) can cause a myriad of symptoms and make everything worse. Low B12 is not something to mess around with

[IrishHeart]

Thanks for everyone's support. I called my doctors office and asked for a referral to a GI. But I have to wait for my doctor to get back on Monday now to see if she agrees. How dumb! But I did have a long conversation with the nurse, and she was the first one to seem sympathetic to my issues. My doctor just seems annoyed with me. It is frustrating! I told the nurse I was going to just stop with gluten all together, and she I may want to wait to see if they could get me a referral on Monday.

I am just so sick of feeling sick.

Wish I had a dime for every time I uttered those words. I know how you feel, hon. We want you to stop feeling sick, too.

HOWEVER,

IF you are intent on getting a "real" Celiac DX, you need to be consuming gluten regularly. In a nutshell, this is what drives the antibodies up in your body and creates the response that keeps the villi flattened.

When you remove gluten from the diet, the antibodies die down and the villi regrow. This is why your testing can be falsely negative. You were "gluten light".

See what we mean? (or you can be like us seronegatives--not showing on blood work at all no matter how much gluten we eat) It's complicated.

But if you are going to see a GI, this doctor will likely want to run the standard tests, which include a celiac panel and a biopsy of the small intestine.

Unfortunately, this means consuming the one thing that makes us sick. This is also why many people forego testing because they cannot do the gluten challenge that is required.

The doctor who ran your vitamin panels should have told you how MUCH to supplement. Be careful of mega-dosing any vitamins or supplements without guidance.

Despite what you may read on the internet, toxicity can and does occur. Believe me.

[lesliev523]

Oh yeah... no one at my doctors office told me what to take regarding supplements, just to take them. I did research and am taking a B12 complex twice a day and 2000 IU of Vit D twice a day. As well as a Magnesium supplement. And a multi vitamin as well.

I don't know if I have the energy for more tests..... uggh!

[nora-n]

We had some discussions here on what causes falsely negative testing, and taking any kinds of steroids will cause the villi to re-grow (and cause negative ttg as it is only supposed to be positive with serious villi damage)

Also, b-12 probably causes villi re-growth and may cause negative ttg tests.

Maybe other things too.

Now the new deamidated gliadin test is designed to catch celiac earlier. Both the IgA and IgG version might be interesting to get, and the IgG version is even more specific than the IgA version. Specific for celiac, that is.

You might have something else caused or worsened by gluten, there are several possibilities, maybe microscopic colitis, maybe non-celiac gluten seinsitivity, and the ordinary celiac tests will not pick up those since they are designed to only pick up celiac with severe villi damage (in order to sort out candidates for biopsy of the small intestine)

[IrishHeart]

Oh yeah... no one at my doctors office told me what to take regarding supplements, just to take them. I did research and am taking a B12 complex twice a day and 2000 IU of Vit D twice a day. As well as a Magnesium supplement. And a multi vitamin as well.

I don't know if I have the energy for more tests..... uggh!

NORA raises excellent points--worth asking the GI doctor about these too!

Hon, you need to call and ask how much to supplement, if your levels were deficient.

How much B-12? Was your B-12 low?

or Do you mean you take B-complex? B-12 is just B-12, not a "complex". But, you don't need to take it twice.

Too much mag can cause loose stools.

[ravenwoodglass]

If your doctor doesn't get right back to you with a referral to the GI call your insurance company as you may not need one. If that is the case you can make the appointment directly.

As was mentioned you do need to be on a regular gluten filled diet for testing and you may still get a false negative.

You do have the alternative of just going gluten free. You really don't need anyone's permission. If you do go for more testing and want the endo you can go gluten free as soon as that is done. You have children and they need a healthy Mom more than your family needs a piece of paper. It isn't unusual for family to get on the bandwagon as far as support goes when they see the difference in your health after a few months gluten-free.