Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Depressed--tests Came Back Negative

samcarter

Recommended Posts

samcarter Contributor
samcarter
Posted

The doctor just called (and I hate how fast he talks--like he can't discuss anything). He just said, "Sprue was negative, everything else looks good." No anemia, no EMA results. I had to call back to ask them to hve a copy of the blood test results at the front for me or my husband to pick up. They won't even mail them. Grr.

I *feel* better without eating bread and pasta. I am waking up without feeling hungover and actually am waking up before my alarm, which never used to happen. I used to sleep in till nearly 9, if I was allowed, and all my life had a hard time waking up. Never felt rested. Now I feel rested. I'm regular for the first time in weeks.

When I read through associated problems with celiac, I have some of them. My family has some of them.

But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted
The doctor just called (and I hate how fast he talks--like he can't discuss anything). He just said, "Sprue was negative, everything else looks good." No anemia, no EMA results. I had to call back to ask them to hve a copy of the blood test results at the front for me or my husband to pick up. They won't even mail them. Grr.

I *feel* better without eating bread and pasta. I am waking up without feeling hungover and actually am waking up before my alarm, which never used to happen. I used to sleep in till nearly 9, if I was allowed, and all my life had a hard time waking up. Never felt rested. Now I feel rested. I'm regular for the first time in weeks.

When I read through associated problems with celiac, I have some of them. My family has some of them.

But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

Hi there,

I definitely can relate. I had the same thing happen to me. I had the bloodwork done and it all came back negative, yet I feel so much better off gluten.

Something you have to keep in mind though is that diagnosis by bloodwork is not always reliable. My cousin who is now 14 was diagnosed with Celiac by biopsy when she was 9, and she had negative bloodwork. So any negative test is never really definitive.

If staying off gluten makes you feel better, you have your answer. You don't need to prove to anyone else that there's a valid medical reason for it, because you may never get one no matter how many tests you run.

Just know you're not alone :)

-Kim

ShayFL Enthusiast
ShayFL
Posted

You can get a "second opinion" by testing with Enterolab. Get the genetic tests too.

samcarter Contributor
samcarter
Posted
  • Author
You can get a "second opinion" by testing with Enterolab. Get the genetic tests too.

When I have the money for it, I will be ordering that series. Do you have to be on a gluten-filled diet to test with Enterolab, or can you stay gluten-free?

ohsotired Enthusiast
ohsotired
Posted

When you pick up your printed copies of your lab results, look at them - I mean go over them with a fine tooth comb.

My Celiac Panel came back negative, and then I discovered that they only ran one blood test, not all five.

They also said everything else was normal - and in reality it wasn't. Test results indicated possible B12/Folic Acid deficencies. So we'll be chatting about that at my follow up.

I'm just saying, make sure the doctor's office ordered everything they were supposed to.

I understand how you feel, believe me. But like Kim said, the blood work (biopsies too) isn't always reliable. A positive test confirms that you have Celiac, but negative tests can't rule it out. If the diet is working for you, then the heck with an 'official' diagnosis - you have your answer. ;)

leadmeastray88 Contributor
leadmeastray88
Posted
When I have the money for it, I will be ordering that series. Do you have to be on a gluten-filled diet to test with Enterolab, or can you stay gluten-free?

Thats the best part - you can be gluten free when you do the test. I was gluten free for a week when I did mine. They say that its still reliable for up to a couple years after you cut it out.

ginnym Newbie
ginnym
Posted

You can also be gluten intolerant without it being coeliac (although some people think it's the early signs of coeliac). My tests are negative for coeliac but the transformation on a gluten-free diet has been amazing. I got "glutened" at the weekend which brought on 3 days of nausea and and 36 hours of abdominal pain. That's all the proof I need that a gluten-free diet is how I must live my life.

Like you, I'm frustrated at not having a name to put to my problem but don't let the docs say (as they did to me) that if it's not coeliac, it can't be gluten. I'm seeing a new consultant on Thursday so I hope for some good advice this time.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tinkonthebrink Newbie
tinkonthebrink
Posted
But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

First of all, the blood tests are not always definitive. But more than that, why do you feel badly about recognizing that a food doesn't work for you and then avoiding it? You don't need a label to be justified in taking care of yourself. Instead of saying, "I think maybe I might have Celiac disease but my doctor doesn't think so...", just say "I don't eat wheat or gluten. I get sick when I eat them." And then don't eat them. If you want confirmation, do a challenge later on and if you react to gluten after avoiding it for awhile you have your answer.

You're entitled to take care of yourself and if that makes you a health nut, well, there are lots of worse kinds of nuttiness.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Oh my gosh! You need to find my topic "Does Anyone Else Feel This Way" in the Coping With section. I feel the same way! My tests were negative but have had an awesome response from the diet. I think because I don't have an "offical" dx that people will think I'm being difficult or nutty. Everyone on the forum that responded gave me wonderful advice.

aorona Rookie
aorona
Posted

If you feel better without gluten, then why still eat it? Two of my sisters decided to go gluten free, one without being tested and one with a negative test result. They both feel so much better and will never go back to gluten eating again. Test results are not always 100% accurate, you should not hold them to such gold standards that the western world believes. If I were you do a gluten challenge for 1 or 2 months before you decide you are going to go gluten free for the rest of your life.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
When you pick up your printed copies of your lab results, look at them - I mean go over them with a fine tooth comb.

Definitely good advice--my dermatologist (who ran the blood work) told me my tests were normal, and at my request forwarded the results to my endocrinologist--who took one look at the blood work and said, "this says you have celiac." And there, clear as day, it said, "IgG--64" (where normal was defined as 0-16). :ph34r:

But even if all your tests are normal--it's BLOODWORK. You are living real life, not numbers on a paper determined by a computer run by someone who may have run the wrong sample, or the wrong test, or you might not have been eating gluten at the time of the test, or all kinds of other things might have gone wrong. But the diet and our response to it is the most reliable test there is for most if not all of us.

samcarter Contributor
samcarter
Posted
  • Author

Thanks for all the input, guys. For now I am staying on a gluten-free diet as best I can and feel better than I have in a while, that's for sure. Actually, when I told my husband that I thought wheat was making me sick, and I wanted to go get tested, he said, "Why don't we just go with what we know, why do we need a doctor?" :D I said that I wanted to know about celiac in particular because our kids could be at risk.

I will be picking my labwork results up as soon as I can (SAHM and don't get out much during the week), and will be looking them over. In the meantime I'm staying gluten free and keeping an eye on myself.

Ginsou Explorer
Ginsou
Posted

I hear what you are saying...and feeling. After being sick for 4 months and in a lot of pain 24/7, I went to a gastro nurse practioner who thought I had celiac. She told me right from the beginning that blood tests are not guaranteed. I had the blood tests done for celiac and h.pylori. I was stunned when they came back negative! And depressed! I had no insurance and knew I had to find the money to have Enterolab tests done. Results were positive--double genes.... just about everything was positive including casein and soy. Recent blood tests also show potatoes, chicken, eggs, corn, peas, pineapple, baker's yeast, carrots, a whole bunch of things! I had been living on corn tortillas, corn tacos, chicken, and pot roast with potatoes,carrots, etc. I don't quite think the food blood tests are the real deal.....I'm going to have scratch tests done. I've also been lactose intolerant for more than 30 years. Next month I will have medical coverage and will be able to have endo and colonoscopy done....am looking forward to it!

My life and health started to turn around after the Enterolab results...and the help of this forum. The Enterolab test was much cheaper than the horrendous uninsured hospital emergency room bill I incurred because of excruciating abdominal pain. All tests were normal.

saralucinda Newbie
saralucinda
Posted

I had a similar experience except I didn't have a blood test I had a biopsy via a scope of my intestine. They found damaged vilii but I tested negative for sprue. However they did send me about a month later a sheet on eating Gluten Free. Still confused on that one. I had eliminated alot of wheat prior to the exam because I was filling so sick and when i did the elimination diet that my primary care physician recommended i started feeling a little better the more I cut wheat out. Now if I eat anything or get glutened accidentally I double over on the ground in PAIN! Like to the point I am moaning. And of course that starts the IBS course up and takes about 3 days to recover. I also just recently found out that my grandpa has it and I am also very enemic. I don't have a blood test that confirms it but I bruise very easily sometimes and am ALWAYS cold. Especially after eating. My husband says he can tell when I am enemic and it is usually the worst before and during my period.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I had a similar experience except I didn't have a blood test I had a biopsy via a scope of my intestine. They found damaged vilii but I tested negative for sprue.

I find this a bit confusing, as celiac , or as it is also known, celiac sprue is defined by--damaged villi. How could they say you tested negative for it????? :blink:

Shelly D. Newbie
Shelly D.
Posted

Like everyone else has said, if it feels good --do it!

From what I've read one indicator blood test (Total serum IgA) gives false negatives because the person getting tested can be deficient to start with so an elevated reading actually comes out looking normal. Be sure you doc is running all five tests on your blood, they are- tTG-Iga, EMA-IgA, AGA-IgA, AGA-IgG, and total serum IgA. (from "Living Gluten Free for Dummies, by Danna Korn)

Although Danna Korn says the EnteroLab stool tests aren't "considered a standard diagnostic tool" for celiac disease I got positive results from a GI test (I used Diagnos-Techs Lab). I collected poo 2x over a 3 day period in vials and spit in another vial, all in a nice mailer kit, provided by an LPN to find out I had gluten intolerance, my family doc Dx-ed the Celiac Disease and ran blood tests that came back negative. I still consider myself as having celiac disease.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.