Celiac / Crohn's (autoimmune diseases)

[thotfulspot]

I've tried different diets and end up the same as if I wasn't. I keep track of what I'm eating and deal with the consequences when I do. I pretty much know what's going to set me off.

Stress is a big factor for me. Out of the 5 of us who had the same surgery, I was the only one not on disability after a couple years. I was a IT Consultant and typically worked 50-60 hours a week on high stress projects. I had a accident 6 years ago which the effects of the accident and my Crohn's finally knocked me out. As of a couple weeks ago I have no active Crohn's in the area they were able to see. I still have to live with the IBS symptoms. It's just a lesser degree of symptoms.

 

[haydenxxl]

I was put on dangerous levels of the steroid Prednisone. Nasty side effects both physical and mental.

That and fighting the disease caused depression and PTSD. I've been fighting that ever since. I've been told by a series of doctors that those issues are common. We moved to Arizona a year and a half ago. Before that I was in Chicago with some of the best doctors available for Crohn's. They had a psychiatrist on staff because it was so common with their patients. They recently passed mmj laws there, but there wasn't a program in place before we moved. It's well known the mmj helps Crohn's and other autoimmune diseases. My new doctor here had no problem signing me up. I'm seeing the doctors in Chicago in December. It will be interesting to see what they have to say since I had been flaring constantly for 6 years.

It's not a cure all. I still have to be on too many pharmaceuticals. It helps with the everyday pain and emotional stress. The quality of life is much better. If it helps me with the extreme case, I'd hope it would help others more.

Do you think the prednisone helped you at all? I'm really confused about that drug, I have never heard anything positive about it. If there are any redeeming factors please let me know.
It sounds like you are doing better now, (although please do correct me if I am wrong), so that is really awesome to hear.
Sounds like you aren't flaring up anymore? or at least no as much??

Sounds really familiar eating rice. Oatmeal and potatoes are the other two items I can usually eat without too many problems.

I am about to start giving oatmeal a try...haven't had it in years.

People tend to think I'm a really picky, healthy eater because I won't eat out or par take in eating if I don't know how it was prepared. It gets incredibly hard to explain to people that just because coconut oil is a "healthy" oil doesn't mean I can eat it. Things like that make life stressful which just causes "flare ups".

Thank you so much for posting this, you put into words exactly how it feels every time anyone watches me eat. It's tough, because peoples reactions can be a stressful combination of ignorance and arrogance.

@bellas @haydenxxl garlic and onions seem to be potential triggers (although nothing and anything can seem to set things off) but it's been incredibly hard to nail down, garlic and/or onion are in a lot of stuff and it's almost impossible to avoid without going to a totally bland diet or cooking everything from scratch, which you don't necessarily have the energy or inclination to do in the middle of a flare up, when I do have the energy I have to contend with being a terrible cook.

I don't eat out much, or go out much, I have to pick and choose the times and events that I go to because it *will* make me more ill for weeks afterwards, not sure if that's the crohns, ibs or a bit of both, either way there's a price to be paid for having fun :/ I've been diagnosed about 5 or 6 years now (it was a long time being diagnosed after I presented to my doctor for the first time, ) but was probably suffering and didn't know it up to 10 years before I went to my doctors. During that time it put a lot of stress on relationships, arranging to go out and do things then not being able to because I was incapacitated and got very very fussy about food

Someone needs to start a food chain that doesn't use garlic or onions lol, a place we could finally go to. Of course gluten free, and ideally you could choose to have that plate with or without tomatoes. haha





Guys, thank you so much for posting, it seriously feels great to find a community of people who can relate to the issues that I had been dealing with. I was diagnosed at 10 or 11 with celiac, 22 now, I put off my appointment to get tested for crohn's....can't deal with the stress right now and am just really watching my diet. Only one 6 hour flare up in the past 10 days...I can deal with that.

 

[ReggieB]

The big problem with coeliac's, crohn's and colitis, Ulcerative colitis, lactose intolerance, IBS, is the first 5 are somewhat related and all 6 have very similar (shared) and relatively non-specific symptoms, that range from 'mildly embarrassing in a lift/elevator' to 'I am so glad I live on my own and no-one else had to witness that...'.

@haydenxxl try not to put it off for too long, trust me leaving it can make things worse, physically or mentally, by the time I presented to my doctor, my doctor thought I quite possibly had cancer and booked me in for an emergency consult, my symptoms were pretty bad, a lot of blood where it shouldn't be, I thought at that point that I wasn't far off leaving the planet. I put myself through a lot of undue stress worrying about what it might or might not be and it ended up as none of them.

 

[thotfulspot]

I don't think the Prednisone ever really did anything to help. Definitely not worth the side effects. That was 20 years ago and there are better options today. I basically called it PMS for men. Retaining water and swings in weight from 180 to 300 pounds. Horrible mood swings and caused major depression. I was in my late 20s, but still had growth in my chest and head. Pain in the The worse side effect is brittle bones even today.

My accident 6 years ago was slipping on some ice at the top of the stairs to our condo in Chicago. Missed all 6 steps and landed head first on the sidewalk. Tried to protect my face with my arm which shattered. Ended up breaking my cheekbone, eye socket, nose, some teeth, and my forearm and elbow. My hip and leg had nerve and vein damage. I should have been dead. The temperature was way below zero and we had freezing rain and snow that day. It was late on a Sunday night, so I laid out there for 40 minutes. Luckily my face landed in a snow bank slowing the bleeding in my face. That along with the Crohn's caused severe PTSD which wasn't diagnosed until a year ago. The damage was made a lot worse because of the bone damage from the high levels of Prednisone for several years even though it was years since I had taken it. I have refused to take it since those first few years. If you've had it a while, you probably need to have a bone density scan at some point. There are also vitamins your body could be lacking because of the non-absortion. Things like vitamin D and calcium. A thorough blood test should show those. I have vitamins I take every day, and a good multivitamin. They had me taking chewable kids vitamins, but I found out gummi versions work better. My go to when I'm having issues are gummi bears and gummi Life Savers. They break down easy and the sugar and vitamins in them help. I always keep some on hand. Even some mmj versions.

I went through a lot of clinical trials because my doctor in Chicago does a lot of research with new medications. I'm currently on a double dose of Humera injections. That just saps any energy and adds to the mental issues. They were treating that with a bunch of different medications to treat the depression and PTSD. I've been able to substitute mmj for most of those.

Since my colon has been removed, I really have to watch what I eat. No raw vegetables. Cooked onion and garlic don't bother me if they have been cooked down. Romaine lettuce was recommended by a nutritionist in my doctors practice. It supposedly breaks down easier than any other lettuce. Oatmeal is fine. I use Umpqua Oats. Tastes much better than most. I haven't found it in a store here, so I buy it from Amazon. It does have dried fruit which I normally avoid. I haven't had any issues with that.

I started having issues when I was in 7th grade. Went through a lot of different diagnoses over the years. It would just flare occasionally, usually tied to stress. It took almost 20 years for a diagnosis of Ulcerative Colitis. Another 15 years before they changed it to Crohn's. I've been told the rate of colon cancer is extremely high. Waiting for that diagnosis.

Other issues you need to watch are eye and joint issues. I'm approaching legally blind in my right eye from hemorrhaging in the cornea. The other eye was damaged in my accident. I'm still able to get my drivers license, but not by much. There has been a lot of discussion about other autoimmune diseases. The doctors have been arguing about if I have Myasthenia Gravis, a form of MS. They can't decide if it's that or just eye damage from my accident.

It never ends. Find a doctor that specializes in IBS and it's related issues. A good option is the Crohn's and Colitis Foundation website. There are some online support groups. I need to look them up and I'll post them.

 

[thotfulspot]

The other site I was talking about is;

http://www.mycrohnsandcolitisteam.com

Big support group with a lot of other people suffering from the same diseases.

 

[thotfulspot]

Forgot to add this site. A lot of research information turns up here;

https://www.patientslikeme.com

 

[Tranquility]

There seems a relationship between the endocannabinoid system and celiac.

https://cannabislifenetwork.com/wheat-sensitivity-endocannabinoid-system/

Our guts and brains are connected in a profound way. We previously began to explore how the endocannabinoid system (ECS) entwines with these connections. Neurological signals sent between the gut’s vagus nerve and the brain’s chemoreceptor trigger zone (CTZ) are regulated by the ECS. Characteristics of malfunctioning cannabinoid ligands exist with each bringing their own deficits to life in some way. A lack of anandamide can potentially cause neurological disorders such as fibromyalgia, IBD, and migraines; whereas CB2 receptor deficiencies might lead to autoimmune diseases, even celiac disease (CD) and thyroid disorder. And building on that, links do exist that connect our dietary choices to a widespread increase in occurrences of wheat sensitivity through the endocannabinoid system. ...​

 

[C No Ego]

There seems a relationship between the endocannabinoid system and celiac.

https://cannabislifenetwork.com/wheat-sensitivity-endocannabinoid-system/

Our guts and brains are connected in a profound way. We previously began to explore how the endocannabinoid system (ECS) entwines with these connections. Neurological signals sent between the gut’s vagus nerve and the brain’s chemoreceptor trigger zone (CTZ) are regulated by the ECS. Characteristics of malfunctioning cannabinoid ligands exist with each bringing their own deficits to life in some way. A lack of anandamide can potentially cause neurological disorders such as fibromyalgia, IBD, and migraines; whereas CB2 receptor deficiencies might lead to autoimmune diseases, even celiac disease (CD) and thyroid disorder. And building on that, links do exist that connect our dietary choices to a widespread increase in occurrences of wheat sensitivity through the endocannabinoid system. ...​

flipping fat burning on helps eliminate to much oxidation in cells... the cells recycle the damages ( autophogy) via activating CB2 ... cb1 is more for electrical signaling ( ions/ electron transport) while CB2 modulates the fat and adds epoxides into the fat to make it signal . Gluten is not turning on fat burning, that is for damn sure