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Blood Test Positive...what Now?


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10 replies to this topic

#1 Mothering3

 
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Posted 18 March 2011 - 04:28 PM

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. :-)
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#2 Igg postive

 
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Posted 18 March 2011 - 05:50 PM

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.
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#3 mushroom

 
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Posted 18 March 2011 - 06:11 PM

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.
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#4 Mothering3

 
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Posted 18 March 2011 - 06:59 PM

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.
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#5 Mothering3

 
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Posted 19 March 2011 - 08:05 AM

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!
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#6 ravenwoodglass

 
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Posted 19 March 2011 - 10:13 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 Mothering3

 
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Posted 19 March 2011 - 11:06 AM

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.


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#8 ravenwoodglass

 
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Posted 19 March 2011 - 12:13 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 Alika Nash

 
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Posted 19 March 2011 - 12:33 PM

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.
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#10 Mothering3

 
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Posted 19 March 2011 - 12:56 PM

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.
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#11 Alika Nash

 
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Posted 19 March 2011 - 08:12 PM

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.
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