• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Negative Blood Test 10 Years Ago...could I Still Have Celiacs?
0

6 posts in this topic

Hello!  I'm in my thirties and had a Celiac blood panel about 10 years ago due to a lot of gastrointestinal issues at the time.  Blood test came up negative, endoscopy showed inflammation but that's all they told me and then diagnosed me with IBS.  I didn't know to ask more, I was so young, but I wish I had pushed for more info.!  Following that I took Levsin for my stomach, which helped, and on my own went off of dairy and basically diagnosed myself lactose intolerant.  Also started probiotics.  Stomach was much better, but it still flared up sometimes.  Fast forward a few years and I started experiencing fatigue that got worse and worse.  I feel like I could sleep for 15 hours or more if I didn't have to work.  I feel lazy, but I'm just too tired to do anything!  I used to be motivated to exercise but not anymore.

 

Other symptoms that have appeared or worsened over the past few years:  loose stools (sometimes), gassy, burping, eczema, itchy skin, anxiety, depression, irritable/moody suddenly for no reason, terrible pms, "fuzzy" thinking, memory problems, can't concentrate, easy bruising, hip and leg soreness,  weakness in muscles of hands and arms and sometimes face, congestion/frequent sinusitis, dry eyes and mouth, costochondritis, asthma,  more cavities (never used to have them)

 

Last year my liver was enlarged and I had low potassium and had to take a supplement - it improved and nothing was ever found out about why the liver was inflamed.  

 

I had a blood workup a few months ago and turned up deficient in Vitamins B and D.  Iron wasn't deficient, but also wasn't very high.  The range is 10-291 and mine was 32.   Red blood cell count was a little high, and alkaline phosphatase was a little low - both of which they said not to worrry about.  They put me on high doses of vitamins to handle the B and D and I thought surely my depression and fatigue would improve with those, but no such luck.  

 

I feel awful most of the time and miss the energy and zest for life I used to have!  I just had another Celiac panel, in the hopes that maybe something will turn up this time.  Is it possible to test positive years later, after testing negative? Does anyone have suggestions on what to do if the test comes up negative again?  I'm almost certain I have some sort of gluten problem...not thrilled about a diet change but if I feel better, it will be totally worth it.

 

Thanks!

 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Yes, it is possible to test positive even if you had a negative test years earlier.  If you do have negative test results again do a gluten free diet trial and see if it helps.  Testing for Celiac is three fold 1 - Blood panel, 2 - Biopsy, 3 - Patient's response to a gltuen free diet. If 3 helps even if 1 & 2 are negative you may be nonCeliac gluten intoleratant. The treatment is the same however - a life long gluten free diet.

0

Share this post


Link to post
Share on other sites

I hope your test will be definitive for you.  The diet is difficult, but a piece of cake compared to living with mental fog and fatigue.  I hope you will be getting better soon.

 

D

0

Share this post


Link to post
Share on other sites

Thank you both!  As crazy as it sounds, I'm almost hoping that I can get a positive diagnosis.  At least then I'll have some knowledge about changes to make and hope of feeling better.

0

Share this post


Link to post
Share on other sites

Hi I am totally new at this diagnosis thing but this may help you. I would get retested if i were you because of this. I was tested for the celiac panel last september by my GP and the result was negative. Now fast forward to this year to March and i retested. The test itself had changed but it was the same celiac panel that was ordered and this time the result was positive. They tested this time for endoantimysial antibodies i may not have spelled that right. So now i am waiting to do a biopsy. Note though that if you want to do a biopsy i don't think you should stop eating gluten because then you will heal and they won't find the intestine damage if you are celiac. So that is just six months of time and the test changed. Retest for sure and i will you well!!! :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


I forgot to mention that i have the same deficiencies B12 and D like you and iron as well for me. I'm in my late 30's too. So those alone I would say Test! 

 

:)

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
      107,393
    • Total Posts
      935,840
  • Member Statistics

    • Total Members
      65,077
    • Most Online
      3,093

    Newest Member
    MayonnaisePlease
    Joined
  • Popular Now

  • Topics

  • Posts

    • I bought Spicely Organics Chili powder from Whole Foods in Bellevue, WA.  I got very sick after eating it, so I tested it with three separate gluten tests.  They all came up positive for >10ppm, which is what their "certification" says they test below.   I just wanted to warn everyone away from them.  They clearly have quality control problems and are not safe for celiacs.
    • It's no secret that nearly all traditionally brewed beers contain barley. The flavor and body barley imparts on traditional beers is partly responsible for their rich, full taste. Finding alternatives to barley that are suitable for brewing gluten-free beer has been a challenge. One solution has been to brew beers with traditional barley ingredients, and then use a combination of enzyme action and filtration to render a final product that test below 20ppm gluten required for gluten-free products. View the full article
    • First have you been tested for celiac disease? Any doctor can do the blood test but you have to be eating gluten on a daily basis for the test to work, nut much just a half slice of bread a day. You should get this tested, the high constipation, coughing stuff up was very common for me before diagnosis. The coughing stuff up for me was from a allergy that developed I did not know of, the mucus was draining down my throat and choking me at times, and was constantly running a fever and night sweats. I was constipated for 4-10 days average back then and drinking plenty of liquids did not help in the least. Your gut rumbling could be many things, celiac is one, SIBO is another especially with the bad breath. in your case it could be related to constipation causing rotting, fermenting, and bacterial overgrowth of the waste in your system. Now to deal with the immediate symptoms, your constipation is also a sign of magnesium deficiency, I imagine you might have noticed some other symptoms from these. Now normally I would suggest either the Natural Vitality Calm or Doctors Best which is easier on the stomach. In your case I straight up suggest the Natural Vitality Calm it is a Magnesium Citrate and works a bit like a laxative. Start with 1/4 tsp twice a day in a beverage, I like the orange or the cherry in a hot green tea or you can try it in a juice. Up the dose slowly over a periods of a week to the full dose or perhaps a little more til you get a bit looser stool.     You mentioned the mucus in the stool 2 things cause this normally. Undigested fats, and inflammation/irritation causing the body to produce the mucus to help defend itself and purge the irritants. A doctor can probably tell you more but I might suggest a digestive enzyme in the mean time. I like to use a super papaya enzyme before and after a meal, find them on amazon. Jarrow also makes full enzyme complex that can help. Other thoughts if your on dairy, stop, with the constipation, and other issues this is a equation for trouble and you can reintroduce it in a few months when you clear up and see if it bothers you then. The bad breath can be a sign of lactose intolerance/digestive issues with dairy also. If it comes you you have celiac then you would have your explanation here as the villi which produce the enzymes to break down lactose are damaged/destroyed first causing most to develop a temporary lactose intolerance which for some goes away after a few months of healing. B-vitamin folic acid, and niacin will be a huge help also with some things. but will we get into that a bit later feel free to look up Liquid Health Stress & Energy if you thing it might be relevant at this point it is what I use 3 times a day with another blend they have.
    • Some of your symptoms sound like my ulcers.  I take carafate before every meal now and they are much better.  I have 3 ulcers possibly caused by taking iron supplements.  They are worse when I eat spicy food and dairy. I might be wrong but for your sake I hope it's just ulcers.  They were found by endoscopy.
    • The yellow is probably fat you are not absorbing.  The pain could be from your intestines being inflamed.  Go see the gastroenterologist.  The ER did not help me with any of those symptoms.  Good thing it's clear so you know it's not your appendix or any other vital organ.  It takes time but probiotics, bone broth and  vitamin D and b 12 help. My pain was mainly my muscles giving out from the malabsorption.
  • Upcoming Events