Trying to figure it all out (newbie)

Hello! I was just diagnosed a few weeks ago, and I am having a bit of a hard time processing what this means for me. I'm a bit anxious about what is to come for me, but also happy to finally know what is going on after this past year of hell. Let me explain:

Starting in March, I would get hives maybe twice a week on my arms or legs. My doctor figured I was allergic to something and told me to track my food and other things. Then in late May, my ENTIRE BODY started itching from toe to head, without hives. I couldn't sleep or work. My liver enzymes were elevated. I got all sorts of weird blood tests and the Gastro thought I had autoimmune hepatitis based on the results. We did a liver biopsy (I wish this on no one, it hurt like hell). It didn't show AH, just your average fatty liver. By the time the biopsy results came back, it had been 5 weeks of itching, and then it stopped and my liver levels went back to normal. But then I was overrun with chronic hives -- every day, over my arms, legs, trunk, and even face. I would wake up sometimes with a swollen eye or chin. The immunologist thought my body was just still in an inflammatory state from the liver situation, and put me on antihistamines (2x Zyrtec 2x a day, 1 Zantac, 2x a day, and Singular 1x a day). The antihistamines mostly work, but I still have breakthrough the hives. I started working with a nutritionist in September with the hopes of figuring out what caused the hives, but also losing weight to help manage my PCOS. Within a few weeks, I had D with 6-8 trips a day, with blood, urgency, pain, etc. Every few days, the D would stop and I'd get C with tenesmus and tiny pieces of bloody stool, but once that passed, back to a few days of D. At first I thought it was my body adjusting to all the fiber, but after two months of this, I broke down and talked to the Gastro who scheduled me for a colonoscopy, and then diagnosed me (he says it's mostly in the bottom 1/3 of my colon). I've actually had bouts of this that lasted maybe two weeks now and again during the past 4 years, all starting after I randomly developed pancreatitis (no known cause for me -- not fat, gallbladder or alcohol), but it would disappear, so I chalked it up to hemorrhoids.

The gastro put me on Lialda (4 pills, once a day). I think it is killing my appetite and making me fatigued. Has anyone ever experienced this before? I can handle the gassy side effect, and managed to quickly figure out how much food I need to eat with it so I don't feel like I want to vomit, but I am just not hungry and I keep falling asleep.

I've also managed to figure out in the past few months that lactose, refined sugar, wheat (not gluten), and peppers (chili, paprika, etc.) actually contribute to both my digestive symptoms and my hives. So I am wondering if anyone heard of hives being associated with UC? After the urgency, the hives are the #1 thing that interfere with my daily life right now, so I wondering if getting myself into remission might help.

Anyway, looking forward to learning more and contributing on these forums!

--S.

Hives are no fun. I have had them a number of times for different reasons. Could you perhaps get an IGA panel done on a wide variety of foods? I developed severe headache and backache if I ate milk products prior to my UC flare. I have since read that leaky gut and UC can go hand in hand.

Wow, my situation sounds super similar to yours. This past summer (June or so), I was having itching all over my body, and hives would appear when I scratched. The dermatologist diagnosed me with dermatographia (an autoimmune thing) and put me on daily Zyrtec, which helped to stop the itching for the most part.

Then, a couple months later (August), my digestive system started acting up, and I was diagnosed with UC about a month after that. It has been well controlled with 2.4 g Lialda/day ever since, except for the minor flare I seem to be in right now (have added nightly Canasa, which got rid of the flare the first time, so fingers crossed!).

I always thought there may be some connection between the dermatographia and the UC since they are both autoimmune issues and they both began at around the same time, but haven't heard of anyone in a similar situation until now. I wonder if there is some underlying immune system problem causing both? I feel like there must be, but this has not been confirmed by any medical professionals haha.

dogsndirt -- I, too, think the skin issues are possibly related, as there are multiple known skin manifestations of UC, and there are a number of studies that correlate UC with food allergies, and for some of us, food allergies = hives, not just digestive problems. It's also possible that whatever set off one, set off the other.

I've actually never had any food allergies or autoimmune conditions before this year. I did an elimination diet, and found the wheat, peppers, and refined sugar. I probably should also cut out tomatoes, but they are my most favorite food in the world, so I will have to slowly work my way there, if not just down to maybe once a week. I also know that I am now lactose intolerant. I am working hard to get this all out of my diet (the wheat is the hardest), but sometimes slip up, and BOOM hives. For example, I ate soup today and totally didn't think about the noodles in it. Within 2 hours, hives all over the backs of my thighs.