Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Bloodwork Is Back, Says I Am Negative. Have Had A Million Test, Can't Figure It Out.
0

8 posts in this topic

Okay I will start out by saying I have had ongoing stomach issues for years. I am 34 years old, and since probably all the way back to twelve I can remember stomach issues. I cough after I eat and my stomach will swell way up. Over the past three weeks, I have been VERY sick. I haven't worked in two weeks. It started out with extreme fatigue, total loss of appetite and chest pains. The pains were right in the center of my chest, and I felt like I couldn't get enough air. I have lost about 10-15 lbs in the past 2-3 weeks. I have been in 3 ER's, to several Dr's, including Internal Medicine, ER, Allergist and now GI. I had several chest x-rays, all fine, my oxygen levels, all fine. I got really bad stomach pain in the center up high, kind of under my breastbone, directly in the center. Once in a while it will radiate to the sides. I have also started with the sensation that food is stuck in my throat, I feel the food is actually in my throat and I can't get it all down. The Drs have run every test under the sun. My blood work continues to come back with elevated white cells, for the past 2 years+ this has shown elevation. They have no clue why. I have had dizziness and have actually passed out or went to pass out 3 times in the past 3-4 Months as well. They ran tests for bacteria in my blood that was all okay, they ran tests for parasites, all fine. They want to re-run the test for h-pylori however I have been taking prilosec for a week now, which I am reading on line can/will alter those results. The allergist did skin prick testing on me IGE, and I came up positive to reactions for Soy, Chicken and Corn. I am still waiting for blood work results back for Inflammatory bowl disease, but my upper GI showed nothing. I did get sick several times after having that upper GI and drinking the barium. I had the bad center stomach pains, and radiation of pain. They didn't seem to care or worry about that. Here are my celiac results. PS I did cut out wheat/gluten for about 2 weeks in the last 2 months. I didn't know this could affect the test until after. ughhh. When I mentioned this to the nurse practitioner, she said oh well, you were tested with the IGA before in the past and it was negative then. I also had no reaction to the wheat on the IGE skin prick testing. Just the soy, corn and chicken.

Results

Immunoglobin A - Value 182 Range & Units 68-378 mg/dL

Transglutaminase - Value 5 Range & Units - 0-19 Units

AB, IGA

Gliadin Peptide AB, IGA - Value 9 Range & Units 0-19 Units

0

Share this post


Link to post
Share on other sites


Ads by Google:

I am little confused about this test. Which one is the total IGA? The Dr. told me he was going to run the IGG tests along with these IGA, to make sure I wasn't IGA deficient. I don't see that he did that?

0

Share this post


Link to post
Share on other sites

I am little confused about this test. Which one is the total IGA? The Dr. told me he was going to run the IGG tests along with these IGA, to make sure I wasn't IGA deficient. I don't see that he did that?

The Immunoglobin A is the total IgA.

Are the test results you posted similar to your previous results?

0

Share this post


Link to post
Share on other sites

That is a good question, I wondered the same thing. It was about a little over a year ago, I couldn't find the results. I thought I posted it on here and looked back at my old posts and couldn't find it. I know it was negative then as well. I see you are off soy and corn as well. I have wondered about nightshades as well. Can I ask what you normally eat, this is going to be a big change for me. The weird thing is the symptoms came on strong about a week after I started eating Gluten again. However, I also went through some MAJOR stress, and that could have brought this all about as well. I am FOR SURE noticing some major stuff going now that I am paying close attention. Tonight I had taco's, like a dummy. I had hard tacos that were corn, my stomach started burning like crazy and I had the feeling of food stuck in my throat. I also made cookies, which had flour. I am not sure how accurate the IGE skin prick tests are. Reading on line it looks like pretty accurate. However my GI Dr. said not that accurate. No idea.

0

Share this post


Link to post
Share on other sites

I eat lots of brassicas, sweet potato, swiss chard, carrots, in fact all root veggies except for beets, all meats, lettuces and herbs, onions, garlic, asparagus, artichokes,avocadoes, all fruits except lemon and lime, all nuts except peanuts, rice, alternative grains except for quinoa, millet and amaranth.

The doctor probably ordered the IgG tests to be run if your total IgA was not within normal range. Since it was, maybe that's why they didn't do them. I think it would be good to get a copy of your old test results and see how much variation there is.

At any rate, even though your results are negative (and presumably your GI checked for celiac on the endoscopy) there is nothing to stop you at this point going totally gluten free to see how you respond. Just because you are not celiac diagnosable does not mean that you are not gluten intolerant. Give it a strict three month trial and see if you don't feel better. :)

0

Share this post


Link to post
Share on other sites




bekkaz,

I too am going through testing but was in a similar place for the last two years. I had no idea what was going on. Just that I was feeling awful and something was terribly wrong. And I too was under serious stress so I know that stress can make a long standing illness go into overdrive. It felt that every part of me was in pain. I went to lots of doctors and then gave up. I couldn't function, I stopped working, I couldn't take care of myself, I was a terrible mess. I would wait all day just counting the minutes until my husband came home. God bless his soul, he didn't pressure me to shape up. No one understood---not my parents, not my husband, and not my in-laws.

I too have always had stomach issues. My stomach would start hurting as soon as I ate since before I started KG so around 3or 4 years old. My parents took me to lots of doctors when I was little and doctors said that I would out grow it. I continued with stomach issues in elementary school, middle school, and high school but I was used to a small stomach ache after meals so I didn't give it a second thought.

A little over a year ago, after lots of visits with my internist, endocronologist, lung specialist, GYN, I decided that doctors will tell me that I'm young and healthy and that all of this is in my head despite the fact that some of values in the blood tests are extremely out of the normal range. So I started to research and learn things on my own. I have learned that all diseases start in the gut. Makes sense right? If you have a diseased gut and cannot digest and/or absorb properly then you'll have lots of unrelated symptoms effecting lot of different systems and therefore no one doctor can make sense and will tell you that you need your head examined. A year ago, I started a grain free, lactose free, and mostly sugar free diet. My health improved a bit and then I started on some supplements, which helped me a bit. But I'm no where near 100% but I can get out of bed and take care of myself.

I am currently going through Celiac Disease testing. I've had 3 different blood tests. The first tested for gluten antibodies, which I told the doc that I wouldn't have because I've been off a gluten free diet for a year. After that, she sent me in for genetic testing. We're still waiting on those results but I decided to make an appointment with an integrative GI and that was a very good appointment. He confirmed that a negative results on a celiac panel blood test doesn't necessarily mean that you don't have the disease. If you haven't gotten the following, this may be something to discuss with your doctor.

1. Breath test for SIBO (Small Intestine Bacterial Overgrowth)

2. Yeast overgrowth

3. Biopsy of your small intestine

0

Share this post


Link to post
Share on other sites

Interesting Meemster. I have had problems with fungal overgrowth. About 2 years ago they a bacterial overgrowth in a stool test, via (Company Name Removed - They Spammed This Forum and are Banned) labs. A functional medicine doctor ordered these tests. I lasted about 3 weeks on a pretty strict diet, and lots of supplements. I kept with ongoing symptoms. Finally I was told, you must have fungus in your environment that you are breathing that is not allowing you to get better. Fast forward, and we found two significant places that had water leaks and created mold. I had the insurane company come, they told me it was NOT toxic mold. So my husband and I ripped all the flooring out, and I cleaned all the black with bleach. HUGE MISTAKE. I have now found out via testing by an environment specialists that it WAS a toxic mold. By ripping it all out we sent millions of spores throughout our entire house. I have had this ALL fixed, and cleaned now. I am hopeful this has helped and will be okay now. I just had everything finished up this past week. Someone told me about something that worked for them for candida. I ordered it and took that about a week ago, it's supposed to help kill off candida as well.

0

Share this post


Link to post
Share on other sites

Hi Bekkaz,

 

The IgE skin prick testing is not going to show an intolerance to foods.  Food intolerances are IgG or IgA type reactions instead of IgE reactions.  That doesn't mean you can't have all those reactions going on at the same time though, just that you can have one and not have another.  So if you have an IgE reaction to a food you shouldn't eat it.  But you could have an IgA or IgG reaction instead and your IgE test might not show anything for that food.  It is possible to have all of those immune reactions together, or any one of them separately for any particular food.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,703
    • Total Posts
      921,801
  • Topics

  • Posts

    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,705
    • Most Online
      3,093

    Newest Member
    imissdonuts
    Joined