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

Autoimmune Hepatitis, Anyone Else Out There?

Brooklyn528

By Brooklyn528
in Related Issues & Disorders

Recommended Posts

Brooklyn528 Apprentice
Brooklyn528
Posted

Hello. I'm posting today because I'm trying to cope with my new autoimmune disease, Autoimmune Hepatitis. I just feel like telling my recent story might help me a little. I know it's lengthy, but thanks in advance.

Ever since my diagnosis, I haven't been in the best of moods. I have been on Prednisone now since 9/26/09. My official diagnosis date is 9/24/09. The prednisone side effects are almost worse than just having the disease. As of my diagnosis date, I was doing alright actually. I hadn't had any outward symptoms really. Then, on 9/26/09, the day that I started treatment, I was jaundiced by noon. I mean noticabley jaundiced to everyone else. My eyes were orange almost. My side effects started from the pred, too. I was up all night and tired all day. My anxiety was at it's peak and my mood swings were horrid. I was also experiencing a lot of spotty abdominal pain of all types, stabbing, burning, and itching, and fullness and pressure agianst both sides of my rib cage. I also got hit with a horrible sinus infection and bronchitis. So, I went to see my primary care doctor. He prescribed me to Zoloft along with the Trazedone I was already taking to sleep. Miralax because I was really constipated on x-ray. And an antibiotic for the infections. So, through the first few days of October consisted of Miralax, MOM, and as much rest as I could get. I started getting cleaned out with the combination of the two, but I was still experiencing pain and fullness as of Friday of last week. My sinus infection had improved, but not gone. So, Friday night, I had gotten the kids into bed by 9, my boyfriend had gone to a friend's house to play cards, so I just settled in on the couch. After two hours of sitting at rest, my heart literally started jumping out of my chest. I could feel my heart beating in my chest, HARD! Then, I could feel my heartrate all through my body. I decided that something wasn't right, and that I needed to be seen in the ER. I called my GI and Hepatologist On call. They wanted me to come there, but there is about an hour away. So, I said I would go to my local ER to be seen, and if needed, I would come up there. I went to the ER. They checked me in and such. My blood pressure was at 135/75 which might not seem high, but it is for me. I have run a low blood pressure all my life, usually 80-90/50-60. They did bloodwork and an EKG. It all came back fine, but my heart was still racing. They gave me two bags of fluid at a rapid rate, some IV Ativan, and Toprol, a medication used to regulate high blood pressure. After all this, my rate slowed, and they sent me home with a prescribtion for Toprol and a diagnosis of SVT, Supraventricular Tachychardia. I wasn't happy with this, and did not agree. I didn't start taking the medicine. Saturday evening, after sleeping all day, I got up about 6 and took all of my medicine and such. I was still having the abdominal pain and fullness, they didn't check my stomach at all the night before. No examine really. On top of that pain, I started having pain in both of my shoulders. I don't have any shoulder issues so this suprised me. So, I just took it easy that night and didn't do much. The next day I got up and went about my day, but I was still having all the pain. I was getting good results from the Miralax and MOM, so I knew it wasn't constipation anymore. I called the GI oncall again, and actually spoke with the same I spoke with on Friday. This time he said that needed to come up there and be seen. So, I made the arrangements for the kids, and my mom, grandmother, and I headed to Indianapolis. When I got up there, the doctor came in and did a physical exam. He told me that my liver was very enlarged and so was my spleen. Since I'm being treated for AIH, he said they had already decided that I needed to stay in inpatient. They did a CT scan that night and bloodwork. The next day, Monday a whole team of doctors came to see me. They told me that they were worried about my gall bladder and spleen. They said they were wanting to do an ultrasound and an EGD as soon as possible. So, I got these things done, and stayed that night. On Tuesday, the doctors came back to see me. They had actually found a lot of things. On my EGD, they found active bleeding in my stomach, stating that it was oozing blood and very friable looking. In my duodenum, they found two ulcer that were not bleeding. They took biopsies, but results haven't come back on those yet. My ultrasound showed that my liver, bile ducts, gall bladder and spleen are all enlarged because aren't draining like they should be. They decided to put me on some meds to control all these things until I get to see my hepatologist. So, now along with 40mg of Prednisone a day, I'm taking Ursodiol for the problem with the bile ducts. I looked it up, and it's a medication used for primary biliary cirrhosis and has to be taken for at least a year. Wonderful! I'm taking Prevacid for my angry stomach, I'm sure I'll be on it for awhile. Oxycodone for pain. I also take Zoloft, Trazedone, and Buspar to control my Prednisone side effects, Miralax, multivitamin, and calcium. They released me from the hospital on Tuesday evening, and I came home. Now, it's Friday and I'm feeling horrible. I'm exhausted and my joints are hurting and locking up. I feel like an old woman, but I'm only 24. I have to keep telling myself that I'm only 24. With all that, my children are in the process of being diagnosed with Celiac Disease. So, I'm doing daily journals on them. Then, just the cherry on top, my boyfriend doesn't understand whats going on at all I don't think.

I just needed to tell me story. Thanks to anyone who reads this. Your support is much appreciated.

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

Celiac.com Sponsor (A8-M):


Brooklyn528 Apprentice
Brooklyn528
Posted
  • Author

Also any tips on warding off the Prednisone side effects would be great! The joint pain is getting really bad and my hands shake all the time. Just wanted to add that.

Thanks

Brooklyn

nasalady Contributor
nasalady
Posted

Hi Brooklyn,

Welcome to the board! :)

But I'm so so sorry to hear about the circumstances that brought you here!

You're definitely not alone; I have autoimmune hepatitis and take prednisone, too.

Up until April 2008, the only AI diseases I knew I had were Hashimoto's thyroiditis and psoriasis, plus asthma. I was OK with that...I felt I could deal with those. But in April I started to think something else was wrong, made an appointment to be checked out and found out that my AST and ALT were each over 1400! I had a liver biopsy in May and was told on June 6th that I had AIH. Started on 40mg of prednisone and 100mg of Imuran the next day.

But that was just the beginning...in July I was diagnosed with fibromyalgia, in August with rheumatoid arthritis, and finally by November I went gluten free as my gastroenterologist was fairly certain that I had celiac disease as well. I've been in a wheelchair since August 2008 because of severe back pain if I walk too far or stand too long (probably the fibro)....also because I had lots of neuro symptoms like vertigo and peripheral neuropathy (that I've blamed on celiac, mostly).

I did start to feel better on the gluten free diet; my gastro symptoms mostly went away and my headaches and vertigo got better too! But in the past several weeks I've been feeling worse. I developed the lupus "butterfly" rash on my face and high levels of anti-double-stranded DNA antibodies in my bloodwork. My rheumatologist has now started me on Plaquenil, because he thinks I may have lupus and/or lupus/polymyositis/MCTD.....diagnoses pending. I'm also having weird vision problems (vertical double vision??).

I have tapered down to 5 mg prednisone at this point, so maybe that allowed a lupus flare-up? I don't know.

Here are all the meds I'm currently on: Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec. They all have their side effects; I'm really sorry I can't tell you how to minimize the effects of prednisone....I wish I knew! Maybe someone else on this forum has advice on that.

In any case, it's such a good thing that you're getting your kids tested for celiac now; please be aware that the bloodwork and biopsies are frequently falsely negative in young children. My granddaughter Carly was tested (blood and biopsy) at the age of two; both were negative. By the time she was three, she looked like a child from a refugee camp, nothing but skin and bones, with the bloated belly of starvation. Her doctor re-did the biopsy and this time it was positive! She's gluten free and healthy now!

You should know that untreated celiac disease by itself can open the door for other autoimmune diseases to develop; please read the following article: Open Original Shared Link

I've probably had celiac most of my life. I was told it was IBS for thirty years, of course. This is the explanation for someone like me, with TONS of AI diseases. It's not lightning striking 10 times in the same spot.....untreated celiac created the perfect environment for all of these other autoimmune diseases to develop, because I wasn't gluten free because I had no idea I had celiac disease!

Which is why it's actually good that you're finding out all of this now, at an early age, instead of not knowing anything until you're 52!!

I should also tell you that I have discovered recently that just gluten free isn't enough for me; I have to be completely grain free (no rice, sorghum, millet, corn, etc.). So I'm now using coconut flour and almond flour exclusively and trying to get used to it. If I have to I will go dairy free too....hope I don't have to! :)

In any case, this is a wonderful place to ask questions! If you want a forum specifically about hepatitis, I've also been participating over at Open Original Shared Link. They cover all types of hepatitis though, autoimmune, hep C, alcoholic cirrhosis, etc.

Take care....and please keep us posted on you and your children!

JoAnn

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Majesticrb
    Newest Member
    Majesticrb
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.