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I'm back need advice.

Amina82

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Amina82 Rookie
Amina82
Posted

I haven't posted here in a while. In July 2015 I was diagnosed with fatty liver disease after high liver enzymes. I went on a low carb, gluten free diet. In August 2015 after only 3 weeks on the diet my liver enzymes dropped by half. I continued on , losing weight. I have lost a total of 50lbs since September.  In November I was visiting family , my aunt told me a friend made a gluten free meatloaf. I ate a large peice and half way through was told there was in fact  wheat flour in the meatloaf. I became very anxious (one of my other conditions) and actually threw up I think from nerves.  I figured it all got out of my system. That same week my anxiety flew out of control and I went into constant panic. Went to my Doctor November 19 in a panic and asked her to check my liver. My levels went up by about 60 points. Now I'm being referred to a GI Doctor.

 My question is, could that accidental ingestion of gluten have done that? I'm a wreck since finding out about my liver. 

I'm so afraid I have some autoimmune liver disease. I see a GI January 25th. .

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LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Hi Amina,

I really do not know much about liver but I want to offer my support. Panic and anxiety definitely are common for celiacs. I know I worry a lot about my own issues and that definitely does not help my body. So, if you can, try not to worry until you speak with the doctor. Concentrate on eating healthy and recovering from getting glutened (make sure you drink enough water, bone broth, etc.) What I have learned about celiac and autoimmune issues is that there are so many symptoms that overlap that we need doctors to figure out  exactly what it is and often (esp. when we are panicking) we see things worse than they are. I know it is frustrating and scary to wait but sometimes we have no other choice so we have to learn to do what we can for ourselves in the meantime. I am still learning how to deal with anxiety and stress of having other possible AIs. In the end, I have to accept that it is what it is and that I will have to deal with it and look for treatment.  Luckily, there is hope and possible treatments for most things these days. Wish you all the best and hope that you won't have any additional issues that you are worried about. 

Amina82 Rookie
Amina82
Posted
  • Author

Thank you so much ...I was on medication for anxiety and panic most of my adult life. I tapered off it over the past two years and cutting down on gluten was the only thing that stopped the panic attacks. I have been a  wreck since the glutening and bad blood test results. I appreciate the support.   

 

cristiana Veteran
cristiana
Posted

Hi Amina

Can you tell us which liver readings went up by 60 points?

What I can tell you is Liver Function Tests aka Liver Enzyme Test results can be skewed in celiacs, from what I understand.  One of my own readings was out of range and is within normal range now.

I totally understand your anxiety, but try to not to panic.   Easily said, because when  I had elevated readings  I panicked a lot and spent far too much time googling not really understanding much of what I was reading and  panicking more - it is a horrid cycle.   There are treatments for all sorts of liver problems, and it could just be in the end that gluten is what is causing yours, as it did mine.

Hugs.

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Amina82 Rookie
Amina82
Posted
  • Author

My ALT and AST went up by 60 points. My other liver functions are normal. 

cristiana Veteran
cristiana
Posted

Those are the ones that are typically affected in celiacs.  I am sure others will chime in.

lmondor Newbie
lmondor
Posted

I can tell you without a doubt that gluten can impact liver enzymes. I had major issues with high liver enzymes for years. They finally figured out I have celiac disease via blood testing.  They told me to make sure to continue eating gluten prior to the endoscopy so of course I ate a ton of gluten. The morning before the endoscopy my liver numbers were in the 400's. After the endoscopy I went gluten free and my numbers were back to normal a few weeks later. So for me - gluten causes liver damage. 

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Amina82 Rookie
Amina82
Posted
  • Author

Thanks for the input. Now I have the fatty liver added and that raises the numbers on its own. In June on gluten ALT was 310 AST 200, August on the fatty liver no gluten diet dropped to 120, 80. A few weeks ago after the gluten incident they went up to 180,160. I'm just scared , I have read a lot about autoimmune hepatitis and other liver diseases. 

CherylS Apprentice
CherylS
Posted
3 hours ago, Amina82 said:

 

I'm so afraid I have some autoimmune liver disease. I see a GI January 25th. .

I'm sorry you're experiencing this.  I have Autoimmune Hepatitis and it's not the terrible horrible no good life changer I thought it would be.  I just want you to know that I'm here if you need anything.

Amina82 Rookie
Amina82
Posted
  • Author

Thank you so much for saying that. It is one of the liver diseases im afraid of. . 

CherylS Apprentice
CherylS
Posted
15 minutes ago, Amina82 said:

Thank you so much for saying that. It is one of the liver diseases im afraid of. . 

I was really scared too.  I think what we read is worst case scenario.  I was worried about being on a lifetime of steroids.  I have never been on steroids for this.  My AIH goes into remission on it's own.  I know I'm having a flare because I lose tons of weight (literally a pound a day), and have joint pain.  I was diagnosed via liver biopsy, I had fibrosis on biopsy but no cirrhosis.  I get my liver enzymes checked every 6 months and they have always been fine.  My first flare was in 1996, my second flare when I was diagnosed was in 2003, and I haven't had any flares since then.

Amina82 Rookie
Amina82
Posted
  • Author

You have just made me feel infinitely better. I'm thinking life long steroids, transplant ..all of this started a few years back when I began tapering off benzodiazpines (Klonopin) after being on it for over 8 years. I was put on it after a gallbladder removal that had complications. I threw a very high liver enzyme once (after drinking ) but then they went down. Now, I'm here again dealing with all of this. I'm terrified of a liver biopsy , I had several ultrasounds that found fatty liver. I was extremely overweight in June (240, I'm 5'4) so my doctor said the fatty liver was my weight.  I lost weight quickly but totally due to a very low carb diet and a lot of 

exersise. I was losing about 4 pounds a week. I have added some healthy carbs to slow the weight loss a little. . My anxiety is out of control and I'm frightened all the time. I do thank you for sharing because I thought it was a death sentence. 

CherylS Apprentice
CherylS
Posted
16 minutes ago, Amina82 said:

You have just made me feel infinitely better. I'm thinking life long steroids, transplant ..all of this started a few years back when I began tapering off benzodiazpines (Klonopin) after being on it for over 8 years. I was put on it after a gallbladder removal that had complications. I threw a very high liver enzyme once (after drinking ) but then they went down. Now, I'm here again dealing with all of this. I'm terrified of a liver biopsy , I had several ultrasounds that found fatty liver. I was extremely overweight in June (240, I'm 5'4) so my doctor said the fatty liver was my weight.  I lost weight quickly but totally due to a very low carb diet and a lot of 

exersise. I was losing about 4 pounds a week. I have added some healthy carbs to slow the weight loss a little. . My anxiety is out of control and I'm frightened all the time. I do thank you for sharing because I thought it was a death sentence. 

When i was going through the diagnosis, I was anxious too.  After i was diagnosed my anxiety went down a lot.  I feel like anxiety is greater in regards to the unknown, once I learned what I was dealing with my anxiety improved.  I'm very anxious about all of this celiac business, very anxious that it isn't celiac and I'll be at square one again, but on the other hand very anxious that it is celiac and the thought of a lifetime without gluten makes me sad.

Amina82 Rookie
Amina82
Posted
  • Author

My mom has Celiac that caused ulcerative colotis. There are so many great gluten free foods now that's it's not so bad ! She makes stuffing , corn breads and has waffles. I stay away from grains for weight control but gluten free is not the worst anymore. I hope we both find answers and find peace with the answers. 

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