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DElizabethE

Daughter's Liver Enzymes?

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Hi,

I'm probably not writing this in the right place. I have a question for anyone who might know. First of all I'll tell you quickly about myself. I have been gluten free for 4 1/2 month (very, very careful with that and cc)...down to a basic diet because things aren't better. Between my gastro Dr. and my ob/gyn they don't know what to do with me. I have an app't with a specialist but not until April 23rd. I'm sure I'll be in the ER before that. I get severe intestinal spasms and even the vicodin I take doesn't help at times.

But now to my question. My 10 year daughter was genetically tested and does not have the Celiac gene (yeah!!, I thought). But her liver enzymes were elevated. She had more bloodwork yesterday and her gastro Dr. called me right away. They are still going up. Now she has to have more bloodwork and an ultrasound of her liver. Can she still be gluten intolerant and not have the gene? Is there a link between gluten intolerance and elevated liver enzymes? Has anyone read anything about that. I have no faith in Drs. right now. Any knowledge out there about it would be greatly appreciated. Thanks.

Diane

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Hi,

I'm probably not writing this in the right place. I have a question for anyone who might know. First of all I'll tell you quickly about myself. I have been gluten free for 4 1/2 month (very, very careful with that and cc)...down to a basic diet because things aren't better. Between my gastro Dr. and my ob/gyn they don't know what to do with me. I have an app't with a specialist but not until April 23rd. I'm sure I'll be in the ER before that. I get severe intestinal spasms and even the vicodin I take doesn't help at times.

But now to my question. My 10 year daughter was genetically tested and does not have the Celiac gene (yeah!!, I thought). But her liver enzymes were elevated. She had more bloodwork yesterday and her gastro Dr. called me right away. They are still going up. Now she has to have more bloodwork and an ultrasound of her liver. Can she still be gluten intolerant and not have the gene? Is there a link between gluten intolerance and elevated liver enzymes? Has anyone read anything about that. I have no faith in Drs. right now. Any knowledge out there about it would be greatly appreciated. Thanks.

Diane

Yes there is a link. I lost my twin a month before our 16th birthday to autoimmune liver disease that we now realize was most likely caused by celiac. I would put her on the diet for a few months and see if it helps, it can't hurt. Many of us have liver enzemes that are elevated on diagnosis and often that will resolve. The doctors thought I had an alcohol problem that I wouldn't admit, they even blamed my ataxia and nerve damage on it. They were very wrong. Also they have not found all the genes linked to celiac yet. Please try her on the diet. It won't mask any symptoms if something else is going on and it may just be what she needs.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Yes there is a link. I lost my twin a month before our 16th birthday to autoimmune liver disease that we now realize was most likely caused by celiac. I would put her on the diet for a few months and see if it helps, it can't hurt. Many of us have liver enzemes that are elevated on diagnosis and often that will resolve. The doctors thought I had an alcohol problem that I wouldn't admit, they even blamed my ataxia and nerve damage on it. They were very wrong. Also they have not found all the genes linked to celiac yet. Please try her on the diet. It won't mask any symptoms if something else is going on and it may just be what she needs.

Thank you for writing back. Right now I'm barely able to deal with my issues and I'm scared to death of Serena's now (because she doesn't take any medication that would cause this). Should I wait to put her on a gluten free diet until the bloodwork and ultrasound are done?

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Hi Diane,

I'm certainly no expert on the liver, other than a few college biology courses, but have had somewhat elevated liver enzymes for a couple of years. I can't read my lab reports well enough to tell if they're going up or down, but I had an abdominal sonogram just a couple of weeks ago and the results were, according to my doctor, "perfectly normal". I would definitely put a daughter of mine on a gluten-free diet immediately. It isn't easy, but it also doesn't have to be expensive and you should be seeing results fairly soon.

Margaret

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I'm no expert either, and going gluten free wll cause no problem and may help. Keep in mind there are liver problems NOT caused by celiac, they will look at those as well. You can have blood problems causing the liver to work more - nothing to do with celiac, copper storage issues etc. My daughter Kathryn just had her liver worked up - ultrasound, complete workup for autoimmune liver ...so far nothing abnormal on those tests, yet she has bilirubin, excess urobilinogen and protein in her urine....we are still waiting for blood results on an ENA profile (rheumatology screen). She also seems to be feeling "crappy" every 7 - 10 days...

Good luck, sounds like the GI doc is being thorough and will find out the casue.

Thoughts are with you

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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I'm no expert either, and going gluten free wll cause no problem and may help. Keep in mind there are liver problems NOT caused by celiac, they will look at those as well. You can have blood problems causing the liver to work more - nothing to do with celiac, copper storage issues etc. My daughter Kathryn just had her liver worked up - ultrasound, complete workup for autoimmune liver ...so far nothing abnormal on those tests, yet she has bilirubin, excess urobilinogen and protein in her urine....we are still waiting for blood results on an ENA profile (rheumatology screen). She also seems to be feeling "crappy" every 7 - 10 days...

Good luck, sounds like the GI doc is being thorough and will find out the casue.

Thoughts are with you

Sandy

Thank you for the nice thoughts. I talked to Serena this morning and together we read the posts I received on this subject. I want her to be a part of this big decision. She realizes that it could help but then again maybe it's something different. I explained that even though I'm not eating much of a variety at the moment (until my issues with pain are resolved) her diet wouldn't have to be like that. Just have to find a bread that she'll be able to tolerate...haven't found a good one yet. Does Pamela's gluten free bread mix turn out well? We're making that later on. Any other input on this whole subject of liver enzymes would be greatly appreciated.

Diane

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Is she being monitored? Mine started going up (in the hundreds)... Then reached two hundred, then sky-rocketed to about 800. I had a liver biopsy done to ensure that I didn't have anything else. Is she taking any supplements? Or medications? When the enzymes are elevated, they might increase it. And some naturally cause it.


Gluten-free, Vegan

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pamela's bread is pretty good. my sister has a liver disease, but she does not have celiac. i have tried to tell her to try gluten free, but she thinks it would be too difficult. i i know it won't cure her liver disease, but it might help with some of the symptoms---she also has ulcerative cholitis.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Is she being monitored? Mine started going up (in the hundreds)... Then reached two hundred, then sky-rocketed to about 800. I had a liver biopsy done to ensure that I didn't have anything else. Is she taking any supplements? Or medications? When the enzymes are elevated, they might increase it. And some naturally cause it.

Hi,

I will know tomorrow (hopefully) when Serena's ultrasound is scheduled and we'll get the bloodwork done at the same time. I don't want them doing anything else, like a biopsy, until we try the gluten free diet for a time. She doesn't take any medications or supplements. She is sick maybe twice a year and then gets children's tylenol...but that's it.

She is starting the gluten free diet today. It won't all be a big surprise for her. She sees what I'm eating and has been reading labels for me. But right now I'm down to fruits, veggies, meat (only chicken or tuna) and the occasional gluten free cookie (have to have something sweet) until my pain is gone...once my Drs put their heads together and figure it out. She even knows about cc.

I should have done a gluten free diet for her awhile. Even without the gene she has been complaining about her stomach way too much. She is also very small in stature for her age. Her thyroid and bone age xray were ok. Thank you for all your posts. And thank you, chrissy, for the note on Pamelas bread. I'm going to make it right now.

Diane

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Hi,

I will know tomorrow (hopefully) when Serena's ultrasound is scheduled and we'll get the bloodwork done at the same time. I don't want them doing anything else, like a biopsy, until we try the gluten free diet for a time. She doesn't take any medications or supplements. She is sick maybe twice a year and then gets children's tylenol...but that's it.

She is starting the gluten free diet today. It won't all be a big surprise for her. She sees what I'm eating and has been reading labels for me. But right now I'm down to fruits, veggies, meat (only chicken or tuna) and the occasional gluten free cookie (have to have something sweet) until my pain is gone...once my Drs put their heads together and figure it out. She even knows about cc.

I should have done a gluten free diet for her awhile. Even without the gene she has been complaining about her stomach way too much. She is also very small in stature for her age. Her thyroid and bone age xray were ok. Thank you for all your posts. And thank you, chrissy, for the note on Pamelas bread. I'm going to make it right now.

Diane

Dear Diane,

Your daughter might need her gallbladder checked. It technically is part of the hepatobialary system. Though she is young, that does not mean much. Problems with it can cause elevated liver enzymes, and elevated bialary acid levels. Gallbladder disease often causes pain in the upper right quadrant of the stomach, right below the ribcage. Blockages in the bile duct are a possibility. Celiac can cause your gallbladder to go bad. I had mine out at 20 years old. Meanwhile, I would watch Serena's fat intake, and maybe try the gluten free diet.

Sincerely,

NoGluGirl

P.S. Keep us updated!


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Dear Diane,

Your daughter might need her gallbladder checked. It technically is part of the hepatobialary system. Though she is young, that does not mean much. Problems with it can cause elevated liver enzymes, and elevated bialary acid levels. Gallbladder disease often causes pain in the upper right quadrant of the stomach, right below the ribcage. Blockages in the bile duct are a possibility. Celiac can cause your gallbladder to go bad. I had mine out at 20 years old. Meanwhile, I would watch Serena's fat intake, and maybe try the gluten free diet.

Sincerely,

NoGluGirl

P.S. Keep us updated!

She started the gluten free diet today. It helped when she got to share in the plans for her lunches at school. I will be able to watch her too because I work at my daughter's school in Special Ed with 5th graders. She's in 5th grade and I have that lunch duty every day. Makes it kind of convenient. My 2nd grader I don't see as often there.

She has a good attitude about it (right now anyways) and say she'll be healthier than all her friends. I do try to watch her fat intake, ever since she had lead poisoning at age 2. Once we moved those levels came down. I'll keep it in mind next time I talk to her Dr. about her gall bladder. I'll definitely keep you updated when I know more. Thanks.

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She started the gluten free diet today. It helped when she got to share in the plans for her lunches at school. I will be able to watch her too because I work at my daughter's school in Special Ed with 5th graders. She's in 5th grade and I have that lunch duty every day. Makes it kind of convenient. My 2nd grader I don't see as often there.

She has a good attitude about it (right now anyways) and say she'll be healthier than all her friends. I do try to watch her fat intake, ever since she had lead poisoning at age 2. Once we moved those levels came down. I'll keep it in mind next time I talk to her Dr. about her gall bladder. I'll definitely keep you updated when I know more. Thanks.

Dear Diane,

Lead poisoning definitely affects a lot. It is scary all that heavy metals can do to your system.

Lead was why the ancient Romans died out. It made the men sterile, and they went insane. Their plumbing was made of lead pipes! Did your daughter undergo chelation to safely remove the lead from her system? It can cause serious mental and physical issues when it is left in the system.

I am glad that she is taking a positive attitude. Many girls her age would not. Watching her fat intake is smart. This is especially so with those liver enzymes. Hopefully, the doctor will be receptive about the gallbladder. I will be looking forward to an update!

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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