Confused. Sick of being sick. New hope . . .

[Raquel R]

Where to start? July 2020 I was going along like normal, probably having a few more cocktails than I should with three teens stuck at home in a pandemic so it didn't surprise me really when I walked into ER and they told me I have Liver Disease (keep in mind I know NOTHING about LD at all at this point). I knew I was sick and it was finally time to see the Dr when my eyes were yellow with jaundice. I spent six days in the hospital with varying diagnoses and tests to be sent home still sick and clueless on how to feel better. I was on Lasix for swelling, potassium for my heart, lactulose to clear the ammonia and bilirubin, xifaxan for I'm not sure what,  B Vit and some cholesterol medicine that I stopped taking quickly because it made me feel worse (if that was possible) I did all the things the medical professionals recommended - I ate a hepatic diet, took my meds, tried walking and made my follow up appointments with Dr's. 

 

All this sounds like the same old sugar coted version we all get when we get ushered out the door but I don't know about you but I don't know a freaking thing about liver disease so a little instruction or "what to expect" would have been great! I have spent the last eight months throwing up, not able to eat, eating then throwing up, having days that I thought I was wining since I didn't throw up. It has been MISERABLE. Let me say that again, MISERABLE. I have no energy, I look like a skeleton from losing too much weight, I throw up constantly (even waking me up in the middle of the night from a dead sleep to throw up), I can't smell, think or look at food. I kept thinking this is can't be my destiny, I am only 45! When I brought this up to the GI who saw me in the hospital, he would just say I probably have a stomach bug  and with my liver issues I need to just continue not drinking and try to eat. After four or five visits with him and not getting any plan of action on how to feel better and suffering constantly I called a specialist who allowed me to self refer to a well known hospital, I have had one office visit and an Upper Endoscopy with the new Dr and have been diagnosed with Celiac Disease through biopsy. I have done some reading and it looks like celiac disease can cause issues with your liver and it is best to get with a dietician and go gluten-free for six months then recheck the liver so for now I feel hopeful that gluten-free will help my liver. I asked for a physical therapist referral as well because I have wasted away to nothing being so sick and need accountability to work out the proper muscles to rebuild myself. I just have so many questions and feel so isolated - my poor husband has taken on a lot and my kids, albeit teens, are struggling too just watching me in pain or lifeless. 

 

Has anyone else had a liver diagnosis that turned into celiac disease and how did it turn out? 

[trents]

Raquel,

Welcome to the forum!

Elevated liver enzymes is what led to my celiac diagnosis almost 20 years ago. I had mildly elevated liver enzymes for more than a dozen years that could not be explained. I did not use alcohol and was tested for every hepatitis variety known without any positives. Now unlike you, I had no symptoms from the hepatic inflammation but I knew something wasn't right. Finally, I scheduled an appointment with a GI doc and he tested me right away for celiac disease. Bingo! After going gluten free for several months my liver enzymes were back to normal. In researching this, I discovered that for around 20% of celiacs, gluten affects the liver.

You really need to educate yourself as to how gluten is hidden by the processed food industry. It shows up in places like you would never expect. Tomato soup (almost all canned soups, really) and in most soy sauces and even in many chocolate syrups. It's also disguised by terminology and you also have to watch for cross contamination where gluten is introduced in to food by coming in contact with grills, toasters, kitchen ware and utensils. 

And lay off those cocktails. Don't put more stress on your liver than you have to.

[Raquel R]

Thanks, Trent! Yeah, cocktails are a thing of my past - we had a good run but I would like to live to see my kids graduate college. 

 

Did you have any issues with stomach distention? I don't have aceties but, I am really swollen right now (I was just diagnosed five days ago) and would like to find a way to help my stomach go down. 

[GFinDC]

Liver problems can appear with celiac disease.  Usually the cause is cell apoptosis (cell death) due to the immune attack on the small intestine lining.  The dying cells let out a chemical scream that causes liver damage.  Usually this damage is reversible on the gluten-free diet.  Rarely someone will develop an auto-immune response to the liver itself.  That condition is very rare though.

https://duckduckgo.com/?q=cell+apoptosis+celiac&t=brave&ia=web

Most likely if you show improvement in symptoms on the gluten-free diet you don't have auto-immune liver issues.

There 2 parts to the celiac disease diagnosis.  Blood antibodies tests and then an endoscopy.  You had the endoscopy but have you had the blood antibodies testing?  It would be good to get that done if not.  You want the full celiac disease antibody panel, not just the screening test.

Recovery from celiac damage depends on many things as far as time goes.  Being 100% gluten-free is the most important thing.  But you may need some supplements as well, like vitamin D, Betaine HCL, and B vitamins.  Eating a diet of whole foods like meats, veggies, eggs, nuts and fruit it good.  Avoiding processed foods, oats and dairy is helpful too.   Betaine HCL and digestive enzymes can help your digestion and reduce digestive system stress.   Peppermint tea can help relive stomach gas and Pepto Bismol can also relieve some symptoms.

Staying away from sugar and carbs can help with stomach gas also.

Edited March 29, 2021 by GFinDC

[trents]

4 minutes ago, Raquel R said:

Thanks, Trent! Yeah, cocktails are a thing of my past - we had a good run but I would like to live to see my kids graduate college. 

 

Did you have any issues with stomach distention? I don't have aceties but, I am really swollen right now (I was just diagnosed five days ago) and would like to find a way to help my stomach go down. 

Celiac disease certainly can cause stomach distension. celiac disease is an autoimmune disease. Gluten ingestion triggers the immune system to attack the small bowel which causes inflammation. Often celiac disease produces a lot of gas as well.

[plumbago]

Your doc may be thinking the bloated stomach is related to SIBO (small intestine bacterial overgrowth), I don't know. That is likely what the xifaxan was prescribed for.

Looks like you've gotten some good feedback. Best of luck.

[M. Martha]

Raquel, I was thinking the same thing about the xifaxin. I’ve been on it twice for SIBO. 

[M. Martha]

I haven’t had liver disease but I can relate to your sense of frustration with the medical help you were receiving prior to your taking matters into your own hands, calling a specialist who allowed you to self-refer to a well known hospital. Well done. Endoscopy is the gold standard of celiac diagnosis. Mine was diagnosed with an endoscopy, even though my antibodies were not elevated. Because gluten was making me sick at the time, I’d cut it out and despite eating wheat bread 2 weeks prior, probably wasn’t able to get an adequate gluten load to trigger the antibodies. What I do know is that when I cut out gluten, the antibodies that were attacking my thyroid gland went from 566 to 41 (Hashimoto’s thyroiditis). My TSH went down and I was able to discontinue thyroid meds. A genetic test revealed I had a gene for celiac disease. With that said, I also had SIBO which can cause damage to the microvilli in the small intestine. That was verified with a lactulose breath test and I did take xifaxin which helped. At the time I didn’t know as much as I know now about SIBO. I’ve been doing webinars and research everyday since 2015. It was important in healing the gut to dial in the diet. Still working on that. I had COVID July 2020 which hit my gut with severe burning near my sternum, nausea and bloating. It knocked more foods out of my diet, but I also believe it revealed and didn’t necessarily cause the SIBO that we treated once again in January with a 2-wk course of xifaxin. My diet now is simple but the first guidance I got in this regard was to shop around the periphery of the grocery store, eat food that your body recognizes as food. Definitely cut out gluten - Tom O’Bryan has been very helpful as a resource relative to celiac disease. (I also had to cut out gluten free processed foods - they were feeding the SIBO)

Here’s what I want to affirm Raquel, you can heal, you can get better. The body is amazing in its ability to repair and renew. You’re doing the right thing. You’re taking charge of your health. It’s hard when you feel sick to be your own advocate but it’s necessary. It’s a process and a journey. You’re reaching out, you’re researching. The body wants to heal. Hold fast to that goal. You can recover. May you be well, blessed and encouraged, Martha 🙏

[Posterboy]

Raquel and Martha,

I think it will help you to read this thread....it has a lot of good helpful hints...

Martha for your SIBO problems try taking Benfotiamine (Fat Soluble B-1 and Magnesium Citrate with meals)...

This article by EONutrition explains  why and how supplementing with Thiamine can help SIBO.

https://www.eonutrition.co.uk/post/got-sibo-here-s-why-you-need-to-get-your-thiamine-status-checked

Where they note quoting

"In the case long-term deficiency, thiamine repletion may actually go a long way toward fixing the initial problem. This is because thiamine deficiency might not only be a consequence, but also a cause of SIBO in the first place."

This awaken article is very informative as well!

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

I am just trying to be quick.....but Martha and Raquel I think this will point you in the right direction.

Be sure to read in detail the thread on Malabsorption......where it goes into more details.

Or just search for Knitty Kitty or the Posterboy and will see many threads explaining the many benefits of taking the Fat Soluble Thiamine's like Benfotiamine or AlliThiamine especially with a Magnesium Citrate and/or Magnesium Glycinate with meals....

The meals help the fat soluble Vitamin and Magnesium be absorbed.

I hope this is helpful but it is not  medical advice.

Posterboy,