Hi everyone. I’m just wondering if anyone here has both of these autoimmune diseases? I have Type 1 and I am being tested for Crohn’s again. I also heard from someone for the first time that Crohn’s can occur along with Type 1 Diabetes. How were you diagnosed if you do have Crohn’s.
Thanks.
Hi Kristy13. Yes. 50+ yrs of T1D and 10 w/Chron’s although it’s a rare type, in upper small intestine. Diagnosis was in-patient/more tests than I can recall over a period of ten days in hospital. Prefer not to remember it, actually. Chron’s is complicated (and there are several types of Chron’s). I’ve seen several gastros over the years. My first gastro in the hospital was the best (Chicago). Shortly after his in-patient diagnosis, a gastro closer to home ordered a specialized bio-marker test from Prometheus Labs. Other gastros I’ve seen since (I’ve moved around the country a lot), said it only shows markers so it’s not very helpful to diagnose active types of Chron’s. Mine is successfully treated & stays in remission w/Pentasa (crazy expensive drug but the only medication that works in my case). What kinds of tests are they ordering for your diagnosis?
Hello,
That’s good you have been in remission. It must be difficult dealing with multiple diseases. I have been looking up some natural things to help and found fish oil. So I might try that some more.
My doctor wants to do an upper and lower endoscopy first. Then a gastric emptying study. I had a CT scan a long time ago that showed Inflammation consistent with IBD. They did a Colonoscopy after that and it was normal. So Crohn’s was ruled out years ago. But, now my doctor wants to retest since I have more digestive issues and constant nausea.
It’s just all confusing because I have had issues with my Type 1 Diabetes for 25 years and then Inflammatory Arthritis for a like 10 years. My Arthritis doctor last year found the HLA-B27 positive gene in my bloodwork. So they have told me I have Seronegative Spondylaropathy.
Hello Kristy, I’m in the opposite situation as you. I was dx’d with crohn’s over 20 years ago yet just dx’d with type 1.5 in May. Wow, I’m also HLA b27 as well. I also have autoimmune liver disease (PSC) and ankylosing spondyltis which it sounds very familiar to yours.
I’m having trouble adjusting crohn’s to diet as many of the foods good on my tummy, are not good for my sugars. Also I’ve been kinda flaring a bit, and due to going to the loo too often (and nutrients not being absorbed right), adjusting my insulin is kinda hard. I’m running pretty low.
Hi Jenn,
Yes that’s what I’m worried about if it is Crohn’s it will complicate things even more. I am in my 40’s and feel like I should be 90. I have extreme fatigue and feel sick all the time. I have been Type 1 for 25 years since I was a teenager. I am now on an insulin pump which helps some. My last A1C was less than 7. It’s crazy the better my A1C the worse I feel. I feel sick all the time and even when not eating a lot. I kind of have assumed some of my issues were related to the Diabetes since doctors always go back to that. I had a doctor years ago suggest that I could have Gastroparesis so I figured that was what caused nausea. Last summer my Arthritis doctor put me on different meds and I was having severe pains in my abdomin. So I was referred to a Gastroenterologist. But, my new Dr. said some of my symptoms and the inflammation in intestines isn’t from Diabetes.
How were you diagnosed with Crohn’s and AS? I’m still not sure if it’s AS since I don’t have Ankylosing in my spine.
Thanks.
Kristy, Hmm, dx with crohn’s was pretty easy and fast for me. Well as soon as I started pooing blood. They ran a lot of tests then. So lot’s of c-scopes and various studies. They also did a blood panel Promethus IBD panel. The Promethus panel was done later as my crohn’s is not typical. It is mostly in the stomach and proctal areas. I don’t really have any small intestine involvement.
One thing I wanted to note as you have arthritis issues…as I have crohn’s I cannot take any type of NSAID. It will cause bleeding and ruin my GI system. (Oh, and for fun, I cannot take tylenol either as I have liver disease too, Primary Sclerosing Colangitis because you can never have just one AI disease/s)
Again, we are kind of mirrors of each other. I guess I was having super high blood sugars, but blamed it on my crohn’s. Similar symptoms. Well I was flaring, hurting, tired all the time. Only difference this time was my eyes wen to hell. I just thought it was just because I didn’t feel well. I also had a bout for iritis (inflammation of the iris) that comes with both IBD and AS.
As for dxing AZ, well, my doc just called it a default dx. Yeah, my arthritis is also seronegative. He ran a super boat load of tests which included the HLA testing. Funny thing, my sister has RA.
it’s crazy you said that. I have had bad issues with my eyes too. Probably not the Liver stuff but I do possibly have Gilbert’s syndrome which is high bilirubin levels. My eyes get blurry and it doesn’t seem to be related to blood sugar. I went to an eye doctor and he said I was having eye migraines. It really does seem like maybe it’s all related. I have also tried Ibuprofen and it makes things worse. I used to be able to take it though with no problems.
Also, I do have RA issues in my family and one with Lupus.
When they ran the blood test for HLAB27 the info my doctor gave me said it’s usually passed on by your mothers side and a close family member could have Crohns. So I have been worried my mom has it since she has worse stomach issues than me. She won’t go to the doctor though.
I didn’t realize that you could have Crohns in your stomach. I think my doctor is wanting to rule that out too. But it’s possible that I just have Gastroparesis since I’ve had Type 1 for 25 years.
The craziest thing about all of this for me is that since I started my Insulin pump over 10 years ago and went from really bad control to close to a 7 A1C all of these inflammatory issues started popping up.
OMG, I have migraines too and have often felt it was more related to AI issues. I use Botox because I cannot really take oral meds (they mess up my stomach). I also didn’t get them until my crohn’s came out of remission.
I was told by docs and literature that crohn’s can show up anywhere in digestive system from mouth to anus. I seem to have issues at both ends. I also get mouth sores. As for stomach, I have ulcers that are not h. pylori related. So I’m on Nexium for life. Doesn’t help my bones any (osteopenia already and I’m also in my 40’s).
What was weird for the diabetes for me, is that I had been in a bad way for about 10 years as in housebound in lots and lots of pain all the time. In the last year I was feeling loads better and was able to leave the house, leave the cane behind and work out again. I was also losing all that prednisone weight. However, in the last year, I also got diagnosed with a few more AI issues(again, AI issues are like potato chips, you can’t have just one)…hell, it was for the hidradenitis supertiva surgery pre-screen that they found my sugars over 400. A week or so later they tested my a1c at 10.8.
Let’s see family history…hmm, mom has grave’s disease and sister has RA. Yet I think my crohn’s came from my dad’s side as well. My grandmother passed due to stomach cancer. Not colon but stomach…which is kinda rare. Dad has also had ulcers throughout his entire life.
BTW, I think I was symptomatic with crohn’s and arthritis since I was a wee child. It was the 70-80’s and they didn’t really look for zebras back then. It was always written off as a “nervous stomach” and “growing pains”. People didn’t question their doctor all that much back then, not like now.
Yes, I guess people go to the doctor more now a days. I never really went as a child until I found out about the Type 1 Diabetes. It’s kind of funny you said that though. I used to have the worst growing pains as a kid. My grandmother had Colon cancer but she did smoke most of her life so it could have been from that.
I just have had so many different things it’s hard to tell if a specific thing is causing it or I am just getting older. Lol. My first sign of the Arthritis type stuff was when I was at a sporting event and tried to put my leg up over a bleacher and couldn’t. I accidentally kicked my kid because my hip and leg didn’t want to move like normal. I felt so bad but we all couldn’t stop laughing. I guess that’s what you have to do just laugh a lot of it off.
I also have had some trouble swallowing so I definitely need to have some tests done. I just have gone through so many the past few years since I started having issues walking and pressure in my chest. Most tests came back good so I’m happy about that. No heart issues. I just am to the point where I am tired of tests and spending all this money on them.
I talked with my doctor and asked about waiting until next year because of the cost and they offered to do the endoscopies for free. So that was great and I will definitely have it done this month. I guess there is something with the Obama care thing where some doctors will perform Colonoscopies for free since it’s used to test for cancer.
That is good that they didn’t find anything with you chest/heart. That sounds scary.
Yeah, I so know what you mean in regards to “is this just me getting older, or is it AI”. Funny thing; when my eyes started going bad I was told it was because I was getting older by quite a few of my docs. Come to find out it was due to diabetes. It sucks, because when things go sour, I’m not sure if it’s age or a flare.
I get yearly c-scopes to test for cancer. Blech. It’s due to me having crohn’s and PSC(AI liver disease(, the risk of colon cancer skyrockets.
Do they have you on any specific meds for now? I mean for you digestive issues and your arthritis. Me, I take Cimzia. It’s a biological that works pretty well for me. Alas, while Pentasa seems inexpensive to me now, Cimzia is super expenisive. It’s in a similar class of meds as Remicade and Humira. It helps with the arthritis too.
This is great that you and Jenn20 can compare notes here. Very complex combined scenarios for each of you. It’s always difficult to know if T1D is the chicken or the egg when it comes to other auto-immune diseases and other issues as you’ve both noted here. I wish you both the best as you continue your search for answers and info.
Thanks Coastal for your information and Jenn too! I guess there definitely could be a connection in genes with Type 1 and Crohn’s. I just have never heard that before or never been tested because I have Type 1. I always get tested for Thyroid issues though. I did get information last year showing that the Ankylosing Spondylitis and Crohn’s was related from my doctors office. I keep wondering if I have that Sjogrens Syndrome thing since my eyes bug me and my mouth and throat are always dry. For years I have thought I was being paranoid until my doctor last year found the HLAB27 and Inflammatory Arthritis on X-rays finally. I guess I kept blaming my issues on the Type 1 Diabetes. So it’s definitely helpful to hear you all have similar issues.
I was put on a few NSAIDs before and last summer Meloxicam (Mobic). But that killed my stomach. Come to think of it maybe my intestines. Then I switched to Sulfasalazine for a while. I still was having pains so my Rheumatologist told me to see a GI doctor again.
hi i have had type1 for 15 years and Crohns for 6years, pentasa helps me with the Crohns,its good to know that there are others out there with the same autoimmune issues
Just wanted to add that a family member (after four different Gastroenterologists) was diagnosed via a pill camera. No other tests caught her Crohn’s diagnosis. The damage was out of the reach of scoping from both ends.