Is This Anyone's Experience?

[lucky97]

Hello!

New here so I'll give this a quick go. This is why I'm on this forum...

In late September (several months ago) I went to my doctor complaining of extreme fatigue, loss of weight and appetite, some occasional vomiting. I mean like EXHAUSTED, something wasn't right. He ordered blood tests and I came back about 10 days later to have the results read. He said my liver enzymes were elevated and, in the 10 days since I saw him, I was now jaundiced. He put me in the hospital immediately and they took all the pictures of various related organs looking for the nasty stuff and kept telling me it sure LOOKED like a hepatitis but the blood work didn't match. Long story short, after a liver biopsy a couple weeks later that showed a now normal liver (about four weeks after my 4-day hospital stay) and an upper G.I. a bit after that, he says it appears to be celiac. I have no known family history and did not seem to have the overt symptoms you folks do (immediate reactions to eating gluten...hell I did it all my life).

I'm gluten free now (for about six weeks) and don't feel any different than I did before the acute hepatitis attack that put me in the hospital. I will say the attack was significant (obviously since I was put in the hospital on the spot) and knew something was wrong for several weeks before I finally went to my primary doctor with these complaints. It didn't seem to be a cut-and-dry diagnosis for them. The hepatologist had narrowed down the hepatitis to autoimmune, celiac, or an allergic reaction to Lexapro (had recently started it but had been on it for awhile before with no apparent problems). I was on bed rest for a month while recovering.

The pictures from the upper G.I. did show some light "scalloping" of the duodenum which surprised me, but the rest of the pictures were normal.

I'm having trouble connecting that acute hepatitis attack with my celiac diagnosis without the family history and common digestive problems I seem to understand many of you experienced with gluten. In fact, I might say I'm a little more "gassy" on a gluten-free diet which is also surprising. Otherwise I feel no different than before, just about 20 pounds lighter! I'm 45 and this is really my first significant medical problem. But the picture of the duodenum doesn't lie, right?

Thanks in advance...not looking for a doctor's opinion, just wondering if anyone else here was diagnosed with celiac under similar circumstances.

[mushroom]

Welcome to the forum.

I have no personal experience of what you are describing but did find the following after a quick google, so while rare it does seem to occur:

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"Autoimmune hepatobiliary disorders are frequently associated with celiac disease, but they might remain undiagnosed because of lack of symptoms, absence of liver-specific autoantibodies, or misdiagnosis of celiac hepatitis. Acute hepatitis in celiac patients should induce one to suspect an autoimmune origin [43]. Patients with end-stage autoimmune liver disease, especially those who are HLA-DQ2 or HLA-DQ8 positive, had a high prevalence of celiac disease-associated antibodies [44]. Indeed, celiac disease has been found in 3%

[GFinDC]

Hi,

There is a whole slew of other autoimmune diseases that people with celiac tend to get more often than other people do. If you search for celiac associated condition or celiac related condition, you will find lists, which tend to vary somewhat.

There are also people who don't get any noticeable GI symptoms for celiac, and that is called silent celiac. Sometimes also people who have no symptoms will develop GI reactions after they have been off gluten for a while. Celiac is tricky, and not easy to diagnose.

People who don't have villi damage but react to gluten are called gluten intolerant, but they sometimes have symptoms in other parts of the body, like joint pain, or muscle weakness, neuro problems etc, etc.

There is a theory called leaky gut where the idea is gliaden (the protein in wheat gluten) can get past the intestinal barrier and enter the bloodstream. That could lead to an autoimmune reaction in other parts of the body, in theory.

[notme]

hi lucky

i have only been dx in july w/celiac (after being misdiagnosed for TWENTY-FIVE YEARS!!!) but in 1986, after having an onset of digestive issues and diagnosed w/colitis ("there's really nothing you can do about it...") i was hospitalized for mysterious jaundice (i was so exhausted and weak i couldn't even pick up my child; i was to afraid i was going to fall or drop him), "non-a, non-b hepatitis" with no bloodwork matching the dr's diagnosis. i stayed in the hospital for a week (on a very clean diet!) and my bilirubin(sp?) went back to normal. my infant son was vaccinated(?) and i was quarrantined for an additional week, even though there was never positive bloodwork to indicate hepatitis. just all the symptoms. then the medical field identified hepatitis c and for years i thought i was in 'remission' and just a matter of time before my hep returned. even though i had lots of blood tests in between, even another baby where they test you for EVERYTHING and no hepatitis ever detected. now, after FINALLY being dx w/celiac and getting the crash course education, i am putting sooooo many puzzle pieces together aka: my pregnancy triggered my celiac symptoms, the hep hospital trip was probably caused by my living on pizza and beer lol very bad dietary choices for celiac people! and those doctors JUST DIDN'T KNOW what was wrong with me! i now consider myself recovering from 25 years worth of body damage and crappy quality of life. it's like: putting gasoline into a diesel auto, and driving it like it's an automatic when actually it is standard trans. i'm still learning how to work it, but so far, every click of a change is making me healthier. i am thinking more clearly, i have sooooo much more energy, MY HAIR IS AWESOMMMME LOL, my 'color' is back in my skin - oh, my skin! stupid rash on my head is finally clearing up my balance is much improved and my allergies are going away... so, yes, it's all related (just before i got diagnosed i was putting my affairs in order b/c i was losing weight so fast pretty sure i was going to die. 5'8" 97 lbs. am now 114 lbs woot!) so, if i stay lucky...... and gluten-free

[sahm-i-am]

I am sorry for the shock of your diagnosis. I know what it's like. I had no GI symptoms, just wacky blood tests results, extreme fatigue, and huge abdominal lymph nodes. They told me I had cancer. For a month I was preparing for chemo, had surgery, told my kids. When they hit me with the Celiac diagnosis I was relieved. Happy. Then reality hit. The Gluten Free diet made me feel worse. I felt for sure they had misdiagnosed me again, even with the positive upper GI - mild scalloping of intestinal folds. Surely this diet wasn't working. And it wasn't until 6 months later I started feeling better - more energy, gained 25 lbs. that I had lost ( I was so malnourished ) and my CT scans revealed normal lymph nodes!

Hang in there and give the new lifestyle a chance to make changes. Sometimes I think those of us with crazy, even silent symptoms take longer to heal and have a harder time with our bodies adjusting.

Good luck and keep this site in your favorites - it has helped me tremendously.

[Glee06]

I was dx with Celiac in 2006 and at first and felt great but I was packing on the pounds. Then I started feeling like garbage really really tired, memory loss, lack of concentration, could not lose weight, always hungry, etc. Found out after seeing 20 doctors and finding a natural one that didn't just want to cure me with colonics and massages...I have Non-alcoholic Fatty Liver which is associated with Celiac. So, the treatment is digestive enzymes, stomach acid balancers (all natural), and a very, very, strict diet

No gluten (duh)

No corn

No rice

No dairy

No Sugar

No Nuts

No oils

No potatoes

No pork

No soy

Nothing processed

and its working. This diet is super strict until about the 90 day mark then I introduce things once per week over 36 weeks and see how I do. I will be skipping the gluten week. Anyway, I had no idea about the fatty liver thing and am just sharing in case someone else is having the same issue as me.

[MelindaLee]

I am relatively new here as well, since I was just diagnosed in August. I did not have any typical symptoms, either. I had upper right abdominal pain I assumed (from location) was my gallbladder. After an upper GI to rule out anything else going on, they found the celiac. I didn't think I had any symptoms, either. I can totally relate to the "a little gassier" on gluten, pre-gluten-free. (Now, I can't touch the stuff without stomach cramps.) Fortunatley my liver seemed to be functioning fine. I have had a list of symptoms I thought were just aging (I'm 42) that have went away. Joint pain(off all arthritis meds now), memory issues, dizziness, ringing in my ears just to name a few. I did not have damage in my intestines, only results which "indicated" the celiacs. I wouldn't go back to eating gluten, despite how frustrating it can be at times. I hope you find the answers you are looking for!