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

Blood Test Positive...what Now?


Mothering3

Recommended Posts

Mothering3 Apprentice

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. :-)


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



Celiac.com Sponsor (A8-M):



Igg postive Rookie

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.

mushroom Proficient

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.

Mothering3 Apprentice

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.

Mothering3 Apprentice

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!

ravenwoodglass Mentor

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.

Mothering3 Apprentice

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.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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.

Alika Nash Rookie

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.

Mothering3 Apprentice

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.

Alika Nash Rookie

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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.