• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Blood Test Positive...what Now?
0

11 posts in this topic

Hi.

Here is a summary of my journey thus far:

For the past 6 months I have had a lot of infections. For the past 2 months, I have been nauseous, not eating well, losing weight. I thought it was nerves at first. I started vomiting occasionally. Not getting better. Super fatigued, achy...getting worse. No bowel symptoms, though.

I went to the doctor and she found bilirubin in my urine, as well as a UTI. She put me on a gluten-free, low-allergen, low-toxin cleansing diet and antibiotics. This was a week ago. Bloodwork came back with impaired liver function...more blood work, and an ultrasound. The ultrasound was normal-spleen, pancreas, liver, kidneys. Bloodwork showed gluten antibodies consistent with celiac. My doctor says this is enough for her to feel confident I have celiac, but she thought a GI might be helpful. I have been referred to a GI, scheduled for endoscopy, but I am still on this diet, and the test is scheduled for a few weeks from now.

What should I do? Take the test? Ask for a different test? Eat some gluten? Advice from the pros much appreciated. :-)

0

Share this post


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

Hi.

I have been referred to a GI, scheduled for endoscopy, but I am still on this diet, and the test is scheduled for a few weeks from now.

Eat some gluten? :-)

Hi, Mothering3. I am not a expert. My doctor told me to stay on my gluten diet until I had the endoscopy biopsy for Celiac.

0

Share this post


Link to post
Share on other sites

If you intend to have the GI do an endoscopy with biopsy looking for celiac disease you will need to resume eating gluten right now., a full gluten diet. One week might not make a lot of difference; if you continue gluten free until the procedure the testing will almost certainly be negative. I don't know why doctors don't know this :unsure: It would be very rare to get a positive result being gluten free for so long preceding the test.

1

Share this post


Link to post
Share on other sites

Thanks, guys.

Also, is there anyone else out there who has experienced primarily liver stuff with their Celiac? I want to understand more about how Celiac affects the liver.

0

Share this post


Link to post
Share on other sites

Well, I think I am not going to eat gluten after all. I am really worried about making myself sicker in the weeks leading up to my endo appointment. My MD called the GI to ask his advice. I am hoping he will decide to either move my appt up or just skip it and maybe use genetic testing or something to confirm the celiac.

But I have felt sooo bad and I can't keep on like this if I have a choice. And its my liver, too, no joke!

0

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks, guys.

Also, is there anyone else out there who has experienced primarily liver stuff with their Celiac? I want to understand more about how Celiac affects the liver.

Celiac is autoimmune. The antibodies can attack the liver. Usually once we are gluten free the liver panels will go back to normal.

I understand your not wanting to go back on gluten. As mentioned though it is likely that your biopsy will be negative if you are gluten free when it is done. It is totally up to you whether you want to have the biopsy or not but if you are going to biopsy going back to gluten is what is you need to do. Some doctors do diagnose based on positive blood work now since the biopsy can have a false negative result even if we are on a full gluten diet. The gene panels while helpful at times can add to the confusion of you are one of the few of us, like myself, who doesn't have either of the two genes considered to be celiac associated.

0

Share this post


Link to post
Share on other sites

Thanks. Yes, I am probably not going to have the biopsy at this point, unless the GI feels its really important and wants to schedule it sooner. I really don't think my body can handle another month of eating gluten as it is impairing my liver function. And while I expect the gluten-free diet will help eventually, after a week my liver function levels are the same. Right now I have lost 23 lbs in 2 months and still losing. I'm pretty sick. And I really can't wait to be able to eat normally again.

Celiac is autoimmune. The antibodies can attack the liver. Usually once we are gluten free the liver panels will go back to normal.

I understand your not wanting to go back on gluten. As mentioned though it is likely that your biopsy will be negative if you are gluten free when it is done. It is totally up to you whether you want to have the biopsy or not but if you are going to biopsy going back to gluten is what is you need to do. Some doctors do diagnose based on positive blood work now since the biopsy can have a false negative result even if we are on a full gluten diet. The gene panels while helpful at times can add to the confusion of you are one of the few of us, like myself, who doesn't have either of the two genes considered to be celiac associated.

0

Share this post


Link to post
Share on other sites

Thanks. Yes, I am probably not going to have the biopsy at this point, unless the GI feels its really important and wants to schedule it sooner. I really don't think my body can handle another month of eating gluten as it is impairing my liver function. And while I expect the gluten-free diet will help eventually, after a week my liver function levels are the same. Right now I have lost 23 lbs in 2 months and still losing. I'm pretty sick. And I really can't wait to be able to eat normally again.

In my opinion you are making the right choice. I hope you heal quickly.

0

Share this post


Link to post
Share on other sites

Thanks, guys.

Also, is there anyone else out there who has experienced primarily liver stuff with their Celiac? I want to understand more about how Celiac affects the liver.

I recently had a celiac panel test and an LBC analysis, from which they determined my liver is not functioning properly. I am on a metaboilic detox now. From the LBC they also say my heart is enlarged, and obvious intestinal damage. But also high yeast in my blood, I have many vit and mineral deficiencies, and possible issues with my thyroid, and a high amount of parasites that are affecting connective tissue.

I also have appointment for an endoscopy, but until then I will stick to my detox as to hopefully settle things down a bit.

I was put on AdvaClear for my liver along with medicine food diet.

0

Share this post


Link to post
Share on other sites

I recently had a celiac panel test and an LBC analysis, from which they determined my liver is not functioning properly. I am on a metaboilic detox now. From the LBC they also say my heart is enlarged, and obvious intestinal damage. But also high yeast in my blood, I have many vit and mineral deficiencies, and possible issues with my thyroid, and a high amount of parasites that are affecting connective tissue.

I also have appointment for an endoscopy, but until then I will stick to my detox as to hopefully settle things down a bit.

I was put on AdvaClear for my liver along with medicine food diet.

Wow, Alika. That sounds rough! So, you were having the liver problem diagnosed at the same time you found out you have celiac? Or did the celiac panel come back negative?

What kind of detox diet are you on?

I am on one too. I can eat: rice, quinoa, amaranth, chicken, fish, vegetables (no corn or beans), fruit, potatoes, chick peas, lentils, olive oil, flax seed, sesame. And that's it. But there is an even more strict one that my doctor gave me info about, that is for Celiac specifically. No grains at all, no nightshades, no high glycemic fruits. I don't think I can swing it.

I am also taking milk thistle for my liver, and probiotics.

0

Share this post


Link to post
Share on other sites

Wow, Alika. That sounds rough! So, you were having the liver problem diagnosed at the same time you found out you have celiac? Or did the celiac panel come back negative?

What kind of detox diet are you on?

I am on one too. I can eat: rice, quinoa, amaranth, chicken, fish, vegetables (no corn or beans), fruit, potatoes, chick peas, lentils, olive oil, flax seed, sesame. And that's it. But there is an even more strict one that my doctor gave me info about, that is for Celiac specifically. No grains at all, no nightshades, no high glycemic fruits. I don't think I can swing it.

I am also taking milk thistle for my liver, and probiotics.

I am new to all of this so bare with me :( I had the celiac panel test done, it is positive. Then they also did the LBC, that was very interesting yet scary!

The diet they offered to me is by Metagenics, called the metabolic detoxification program for 10 days.

Day 1 was eliminate all refined sugars, caffeinated drinks, artificial colorings, flavors, and sweetners and no flesh foods.

Day 2 was in addition to day 1, eliminate all dairy and eggs, and start the powdered beverage.

Day 3 was in additon to prior days eliminate wheat, barley, spelt, etc. and continue beverage drinks.

Day 4 was in additon " " " " (rice) grains, nuts and seeds and increase beverage drink to 2 scoops.

Tomorrow is day 5 for me...

Day 5 is continue eliminating foods from day 1-4 as well as legumes. Eat only cruciferous vegetables, raw greens, fresh apples and pears, pear and apple juice, and increase beverage drink to 2 scoops 4 times per day. Day 5 is repeated for day 6 and 7.

Day 8 is gently add back fruits, vegetables and white rice only, decrease beverage drink to 2 scoops 3 times this day.

Day 9 is add back millet, tapioca, amaranth and buckwheat, legumes, nuts and seeds, decrease beverage drink to 2 scoops twice a day.

Day 10....Yeah! I will have completed the program.

The powdered beverage is called Ultra Clear RENEW (medicine food), by metagenics, I also am taking AdvaClear 3xper day, by metagenics also. In addition to GI-revive supplements 3x per day, and Pleo San Klebs 10 drops every other day.

And stuff I was already taking, fish oil, vit D3,lisinopril for HBP.

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
      106,112
    • Total Posts
      928,999
  • Member Statistics

    • Total Members
      63,516
    • Most Online
      3,093

    Newest Member
    Ophelia
    Joined
  • Popular Now

  • Topics

  • Posts

    • I would have bouts of discomfort and nausea after eating certain foods, but I always assumed that it was because I was eating garbage like corn dogs and etc. Did you ever have any symptoms of vitamin deficiencies like angular chelitis? I had this in high school all of the time, and when I tried to scratch it off my lips would get all red and it looked like I was wearing lipstick (I'm a guy you can probably understand how embarrassing this was). I went to the doc to get a b12 shot twice and most of my current symptoms cleared up, but it was temporary. I don't remember anything else besides having diarrhea often which I always figured was just because of my unhealthy diet.
    • I do not think anyone was discussing " formed chicken" here.  Obviously, that is a different food than plain fresh chicken.
    • Dermatitis Herpetiformis  can manifest itself in lesions anywhere, not just elbows and knees.  I have it and although gluten free, I still have severe itching and little bumps that itch.  I don't have the lesions any more, but itching can drive a person mad.  the bumps can be on buttocks, shoulders, etc.  Dapsone is the standard treatment, if you are not allergic.  I also use topical prescription creams.  I take 2 Zyrtec a day and benedryl at night.  Benedril spray helps with temporary relief.  Also am on hydroxyzine and doxepin.  Sometimes steroids like prednisone help, but can ruin ones blood sugar counts.  I use Grandma's Baking Soda soap.  Straw may certainly be a factor.  I must be coming in contact with a trigger of some kind even though I'm very careful about my diet.  Change your dermatologist and get a specialist in DH.  I went for years with all kinds of stomach and bowel issues and was 69 years old before being correctly diagnosed.  Don't let anyone tell you it's your imagination!
    • I can not help you except to offer some emotional support.  You are not crazy!  You can get glutened on a farm.  Here is a study: http://www.nejm.org/doi/full/10.1056/NEJMc063112#t=article This topic has come up before: Hugs!      
    • I know I got glutened after handling some straw last year helping out decorating at the farmers market then going to eat something without washing my hands. I later learned it was wheat straw, some of them still had the heads on them and everything. Gave that area wide walk around after that, I did not have much issues with inhalation with it. But if your there with a thrasher running, down wind during the harvest.......I imagine it might be hell if your super sensitive. If you get skin reactions that easily from it I guess taking a vacation during harvest? Try staying indoors, dust mask, long sleeves and pants hope for the best.......I am just throwing some ideas out there. Maybe someone can help a bit more.
  • Upcoming Events