Has any other Celiac patient experienced bowel perforation?

[Belle7881]

I was just diagnosed with Celiac Disease six months ago at the age of 35.

 

Five years ago (at age 30), I fell ill for days with flu-like symptoms and abdominal pain. My doctor's office did a blood test and sent me to the hospital where I underwent emergency surgery for "perforated diverticulitis".

Until this point, I had always considered myself healthy. I am a non-smoker. I was 5'7", 145 lbs. I wasn't aware I had diverticulitis. Apparently it was so bad that it had burst open. My surgeon told me if I had waited 24 hours to seek medical attention, I would have likely died. Very scary. He also told me that this kind of illness at my age was extremely rare.  This is the type of thing that they see in people over 80.

I had to have 1.5 feet of large colon removed. I wore a colostomy bag for 3 months while I healed and I was able to have the reversal surgery after that. 

Following the surgeries, I've had a lot of digestive problems. I saw many specialists who told me it was anxiety that induced my symptoms.  Finally I went to a new GI who found the celiac disease. After my endoscopy, he told me it was advanced. I know celiac is supposed to attack the small intestines, but I am curious to know if there is a link to large bowel issues as well.

Has anyone had a similar experience? Or able to shed any light on this?

I also have:

Fibromyalgia

Shadow block migraines

bulging discs

scoliosis

acid reflux

Chronic nausea

peripheral neuropathy

memory issues

Chronic ear pain

swollen lump under left ear (for two years)

reynauds syndrome

(all of which began after my surgeries)

The only thing that appeared to get better after beginning a strict gluten free diet, is the acid reflux and chronic nausea. Everything else has gotten a lot worse.

 

[ravenwoodglass]

I thankfully didn't have a preforation but shortly before diagnosis I had a colonoscopy.  It was set up by my GP on an emergency basis for the next day. Met the GI minutes before procedure. The doctor said I had the most extensive diverticuli that he had ever seen. My entire large intestine was involved when it usually just effects the left descending. Interestingly when I had  a colonoscopy done 5 years after I was diagnosed the diverticuli were almost totally gone. The only change was that I had been diagnosed celiac and had been gluten free for about 5 years then. In my case I believe there was a link between the undiagnosed celiac and diverticulosis.  Curious to see if others had anything similar.

[ravenwoodglass]

1 hour ago, Belle7881 said:

I was just diagnosed with Celiac Disease six months ago at the age of 35.

 

 

 

I also have:

Fibromyalgia

Shadow block migraines

bulging discs

scoliosis

acid reflux

Chronic nausea

peripheral neuropathy

memory issues

Chronic ear pain

swollen lump under left ear (for two years)

reynauds syndrome

(all of which began after my surgeries)

The only thing that appeared to get better after beginning a strict gluten free diet, is the acid reflux and chronic nausea. Everything else has gotten a lot worse.

 

A lot of what you have listed here I could have written myself when I was first diagnosed, and more. Don't lose hope as much of that list may be crossed off after you have healed. Unfortunately that can take some time. Do be sure to check out the Newbie 101 thread at the top of the Coping section it will have a lot of good information for you. Do ask any questions you need as you have found a place with alot of good and knowledgeable people who are very helpful.

[AmberJ]

Yes, I had a perforated colon as well. At 21 years old. I'm now 35 and only a year into being gluten free, and no more issues as long as there is no cross contamination issues. Your body can only handle one pain at a time, so if something got worse, look into that. (And keep in mind misdiagnoses are common with Celiac patients.) Hang in there, it does get better.

[Ennis-TX]

Well this has me a bit concerned, I know I have had celiac for years, But as of late I started having really bad issues in my large intestine, mostly extremely blood stool, bunch of yellow mucus, night sweats, and sometimes just dropping clotted blood when I feel the need to go to the restroom. I have scopes in under 2 weeks scheduled, doctors said it could be anything and they will not know til they get in there. Honestly the anemia from the blood loss is driving me nuts along with crazy cravings for chocolate, almonds, meat, and dirt.

[GFinDC]

There was a poster some years ago who had an emergency colostomy.  She had celiac and decided to skip the whole silly gluten-free diet thing.  It didn't work out well for her.   She did come by and post about her experience though to warn others.  Which was  great thing to do. 

[Victoria1234]

On 12/5/2016 at 6:05 PM, Ennis_TX said:

Well this has me a bit concerned, I know I have had celiac for years, But as of late I started having really bad issues in my large intestine, mostly extremely blood stool, bunch of yellow mucus, night sweats, and sometimes just dropping clotted blood when I feel the need to go to the restroom. I have scopes in under 2 weeks scheduled, doctors said it could be anything and they will not know til they get in there. Honestly the anemia from the blood loss is driving me nuts along with crazy cravings for chocolate, almonds, meat, and dirt.

What happened, Ennis ?!

[Ennis-TX]

Was really bad ulcerative colitis. It was December and I was eating more carbs and sugars then before I knew. It was causing flare ups of inflammation, swelling, and bleeding of the intestines.

[Victoria1234]

On 5/15/2017 at 11:13 AM, Ennis_TX said:

Was really bad ulcerative colitis. It was December and I was eating more carbs and sugars then before I knew. It was causing flare ups of inflammation, swelling, and bleeding of the intestines.

How very scary! So glad you figured it out. My husband had perforated diverticulitis and it was the worst thing ever. Symptoms were similar to yours. Is there a treatment for uc?

 

[Ennis-TX]

1 hour ago, Victoria1234 said:

How very scary! So glad you figured it out. My husband had perforated diverticulitis and it was the worst thing ever. Symptoms were similar to yours. Is there a treatment for uc?

 

It is a autoimmune disease like celiac, diet, and antiinflammatory medications. Diet was a huge part of it, triggers for it are gluten dairy, soy, carbs, and sugars like glucose, fructose, and sucrose. Spicy food can be hit and miss depending on the spice. I kept on trying to eat small amounts of dried fruit, gluten-free grains, and carbs thinking it was healthy and I was just trying to get the nutrients. I had no idea this was causing the inflammation and bleeding. I thought for years I had bad gut bacteria and the distention I got from eating carbs/sugars was gas and bloating from the bacteria. Ends up it was my intestines swelling with blood and inflammation in reaction to the sugars. Sorta funny how that worked out, got to admit I love the new diet. I do Crave sweets like a mad man especially fruit now days.....I go through 2 jars of sugar free jam a week for the cravings. But overall eating no no/low carb foods on a ketogenic based diet has proved wonderful for my mental health and physical. BEST thing about this is it led me to find a really great gluten-free bread that has almost no carbs, and makes the best toast and even french toast with it.........untoasted it is not very appetizing though. OH one other things I started having to make butters out of all my seeds and nuts, seems the chunky/rough nature of raw whole ones were giving me issues. Thank god I got stone mill, and a commercial food processor lol. There are a few other issues but they cross relate with enzyme issues and intolerance to foods I have so I did not mention them.

[Victoria1234]

1 hour ago, Ennis_TX said:

It is a autoimmune disease like celiac, diet, and antiinflammatory medications. Diet was a huge part of it, triggers for it are gluten dairy, soy, carbs, and sugars like glucose, fructose, and sucrose. Spicy food can be hit and miss depending on the spice. I kept on trying to eat small amounts of dried fruit, gluten-free grains, and carbs thinking it was healthy and I was just trying to get the nutrients. I had no idea this was causing the inflammation and bleeding. I thought for years I had bad gut bacteria and the distention I got from eating carbs/sugars was gas and bloating from the bacteria. Ends up it was my intestines swelling with blood and inflammation in reaction to the sugars. Sorta funny how that worked out, got to admit I love the new diet. I do Crave sweets like a mad man especially fruit now days.....I go through 2 jars of sugar free jam a week for the cravings. But overall eating no no/low carb foods on a ketogenic based diet has proved wonderful for my mental health and physical. BEST thing about this is it led me to find a really great gluten-free bread that has almost no carbs, and makes the best toast and even french toast with it.........untoasted it is not very appetizing though. OH one other things I started having to make butters out of all my seeds and nuts, seems the chunky/rough nature of raw whole ones were giving me issues. Thank god I got stone mill, and a commercial food processor lol. There are a few other issues but they cross relate with enzyme issues and intolerance to foods I have so I did not mention them.

You are sooooo inspirational.

[Lis Coyle]

On 12/5/2016 at 1:36 PM, Belle7881 said:

I was just diagnosed with Celiac Disease six months ago at the age of 35.

 

Five years ago (at age 30), I fell ill for days with flu-like symptoms and abdominal pain. My doctor's office did a blood test and sent me to the hospital where I underwent emergency surgery for "perforated diverticulitis".

Until this point, I had always considered myself healthy. I am a non-smoker. I was 5'7", 145 lbs. I wasn't aware I had diverticulitis. Apparently it was so bad that it had burst open. My surgeon told me if I had waited 24 hours to seek medical attention, I would have likely died. Very scary. He also told me that this kind of illness at my age was extremely rare.  This is the type of thing that they see in people over 80.

I had to have 1.5 feet of large colon removed. I wore a colostomy bag for 3 months while I healed and I was able to have the reversal surgery after that. 

Following the surgeries, I've had a lot of digestive problems. I saw many specialists who told me it was anxiety that induced my symptoms.  Finally I went to a new GI who found the celiac disease. After my endoscopy, he told me it was advanced. I know celiac is supposed to attack the small intestines, but I am curious to know if there is a link to large bowel issues as well.

Has anyone had a similar experience? Or able to shed any light on this?

I also have:

Fibromyalgia

Shadow block migraines

bulging discs

scoliosis

acid reflux

Chronic nausea

peripheral neuropathy

memory issues

Chronic ear pain

swollen lump under left ear (for two years)

reynauds syndrome

(all of which began after my surgeries)

The only thing that appeared to get better after beginning a strict gluten free diet, is the acid reflux and chronic nausea. Everything else has gotten a lot worse.

 

Hi there Belle 7881

I realise this was posted years back but it's still active so I thought I would respond.

I'm researching my own family history with celiac and an ancestor (great grandfather) that I just found out had a colostomy operation. My Mother is undiagnosed Celiac with diverticulitis and will do nothing about it, so frustrating. 

In terms of your many issues, I have an idea of what is going on as I work as a healer using hypnotherapy and other techniques. Basically it sounds like your immune system has gone into hijack, or high alert mode. This happens when our fight or flight system goes into a panic mode in order to protect us. The irony is it does more harm than good as it goes into hypervigilant mode and sees EVERYTHING as an attack. A celiac developing thyroid problems is a typical example of this - the thyroid hormone looks like gliadin in the bloodstream and triggers an attack. Auto immune disease is the body attacking ITSELF in a case of hyper vigilance, and be devastating and dibilitating trying to get to the bottom of these "mystery" illnesses. Trust me, I know :D.

Of course, genetics (such as in my recent discovery) are often the original trigger.

If you are still able to read this response, I hope you were able to find the answers and were healed from your issues.

With compassion, 

Lis