Celiac or Worse?

[idontact]

First off I am glad to have found this site. It has helped me a lot and would love to get some more help for my symptoms. I of course Dr Googled myself into anxiety. Would love to talk to people who are going through the same things. My friends and family are understanding but are not going through the same thing. I will start with the basics. 

• Age- 30
• Sex- M
• Race- Eastern European(White)
• Duration of symptoms- Wednesday will be 3 weeks
• Dia. with Gilbert's syndrome 4 years ago, lactose intolerant, and dermatitis. DR said I might have IBS but never did any tests.

Now to move on to symptoms. Which started 3 weeks ago.  

• Weight loss(about 10 lbs) fluctuates 5 lbs a day. 
• Diarrhea
• Mucus in stool. Some times only passing mucus
• Bloating 
• Gas- both ends
• Hiccups
• Stomach Noises- A lot!!!
• Insomnia
• Anxiety
• Narrow Stools- Ribbon and pencil thin
• Anal Fissures
• Loss of appetite 
• Brain Fog
• Some pain on both left and right side of body. Not constant. Not very painful just there occasionally.  

Most of those symptoms are still present to this day. So, I been dealing with some of the aforementioned symptoms for sometime now. This isn't something new but would get better after a couple days. Recently, they been sticking around. I started feeling bad about 3 weeks ago. Like on the couch for the better part of a week. I started feeling a bit better but the symptoms above are still happening. 

I been on a gluten free diet for about 2 weeks now. I did have a slim-jim which I didn't know had gluten in it a week ago but that's the only gluten I had since. 

My stools were going between hard pellets to water. I mean 0 solids. Now, my stools have been narrow. I did have 3 days of good BM's but now all thin, narrow, and ribbon like. This is what has me worried. I do see blood on my TP but I can make it happen even without using the bathroom. If I wipe hard enough I can cause small blood on the tp. Normally I feel good. Like no pain at all. The only things that I get is the narrow stool, gas, hiccups, and stomach noises. I can feel where the stomach noises are coming from which is normally left side near pelvis. 

My fear is of course is the narrow stool and the stomach noises. Dr googling myself led to Colon/Rectal Cancer. Which got my anxiety sky rocket. I did go see the doctor and she would like me to get a colonoscopy and endoscopy. I just got health insurance so I am waiting on my cards to come in to get that started.. I did take a FIT test for blood and the results were positive but the line was very faint. 

Has anyone else had these symptoms or have these symptoms currently? How long did it take you for the symptoms to go away and start feeling better? Any thing you can recommend I do or try? 

I apprentice just even getting to talk to someone. I would love thank everyone for that. 

[cyclinglady]

If you want to get tested for celiac disease, you must be consuming gluten or ALL celiac testing will be invalid.  You need to be on gluten for about 6 to 12 weeks prior to a blood draw.   It is only 2 to 4 weeks prior to an endoscopy, but you still need to have the blood tests as villi damage can be attributed to many things like Crohn’s.  

http://www.cureceliacdisease.org/screening/

https://www.beyondceliac.org/celiac-disease/Testing-and-Diagnosis/The-Gluten-Challenge/1510/

Adhering to a gluten free diet for life can be difficult (but not impossible) without a diagnosis.  Please continue to research!  Celiac disease is complicated!  ?

 

[Awol cast iron stomach]

Cycling lady has excellent advice. I spent 20 plus years diagnosed IBS and no biopsy or test done. Symptoms only. As you can see I am here on the forum so that was a misdiagnosis ?. 

Alas in my 30 s I did get a colonoscopy , but no one ever did an endoscopy until a little under 3 years ago. I got both ends.  For the record neither scope confirmed IBS. I am currently diagnosed NCGS in the records , which for now may be a blessing insurance wise. I was unable to finish the gluten challenge, my DH oddly did not flare during my failed 2 week challenge ( I made it 6 days), I did however have some epithelial changes etc just not the destroyed " marsh  grade " carpet.

Low and behold I now in the rare cc event get DH at the slightest cc.

The way we know I am likely celiac DH and not NCGS is my rash and the university of Illinois celiac center  in the faq section in 2016 states PUPPP rash can be found in DH patients. I "joyfully" experienced that back in 2004. So many lightbulb moments once I joined this forum. I found my peeps and a name for what ailed me my lifetime? 

Anytime someone can take the less convoluted , complicated route, I fully support that. If this Dr is ready to test for Celiac , do so now while gluten is in your life.

I needed that nasty failed challenge as I never felt I could join this forum without a diagnosis. Once I joined I learned what I did right until then and what I did wrong. I live in a completely gluten-free household, only eat food from home, and do not eat out. It is how I am best kept safe.

I learned all this from the veteran Celiacs here.

Welcome and good luck.

[Shayla21]

I know this was posted a while ago but I just wanted to mention that I too pass mucus by itself and in my stool! It’s mostly yellow! And being someone who suffers from health anxiety, I went to dr google who convinced me for months that I had colon cancer. I tested positive for celiac and waiting on my endo  

Hope things are well now!! 

[Ennis-TX]

Just now seeing this post but I dealt with the mucus, blood, gas, and sometimes streamers and liquid stool for years even after going Gluten Free. I later learned I had Ulcerative Colitis in addition to celiac, and it was flaring to sugars, starches, and spices >.< I recently just had it flare for the past week really bad after I tried reintroducing some spices via a few Mexican dishes....So reminder it is still present even after healing lol.

[KS68]

On 1/27/2019 at 6:02 PM, idontact said:

First off I am glad to have found this site. It has helped me a lot and would love to get some more help for my symptoms. I of course Dr Googled myself into anxiety. Would love to talk to people who are going through the same things. My friends and family are understanding but are not going through the same thing. I will start with the basics. 

• Age- 30
• Sex- M
• Race- Eastern European(White)
• Duration of symptoms- Wednesday will be 3 weeks
• Dia. with Gilbert's syndrome 4 years ago, lactose intolerant, and dermatitis. DR said I might have IBS but never did any tests.

Now to move on to symptoms. Which started 3 weeks ago.  

• Weight loss(about 10 lbs) fluctuates 5 lbs a day. 
• Diarrhea
• Mucus in stool. Some times only passing mucus
• Bloating 
• Gas- both ends
• Hiccups
• Stomach Noises- A lot!!!
• Insomnia
• Anxiety
• Narrow Stools- Ribbon and pencil thin
• Anal Fissures
• Loss of appetite 
• Brain Fog
• Some pain on both left and right side of body. Not constant. Not very painful just there occasionally.  

Most of those symptoms are still present to this day. So, I been dealing with some of the aforementioned symptoms for sometime now. This isn't something new but would get better after a couple days. Recently, they been sticking around. I started feeling bad about 3 weeks ago. Like on the couch for the better part of a week. I started feeling a bit better but the symptoms above are still happening. 

I been on a gluten free diet for about 2 weeks now. I did have a slim-jim which I didn't know had gluten in it a week ago but that's the only gluten I had since. 

My stools were going between hard pellets to water. I mean 0 solids. Now, my stools have been narrow. I did have 3 days of good BM's but now all thin, narrow, and ribbon like. This is what has me worried. I do see blood on my TP but I can make it happen even without using the bathroom. If I wipe hard enough I can cause small blood on the tp. Normally I feel good. Like no pain at all. The only things that I get is the narrow stool, gas, hiccups, and stomach noises. I can feel where the stomach noises are coming from which is normally left side near pelvis. 

My fear is of course is the narrow stool and the stomach noises. Dr googling myself led to Colon/Rectal Cancer. Which got my anxiety sky rocket. I did go see the doctor and she would like me to get a colonoscopy and endoscopy. I just got health insurance so I am waiting on my cards to come in to get that started.. I did take a FIT test for blood and the results were positive but the line was very faint. 

Has anyone else had these symptoms or have these symptoms currently? How long did it take you for the symptoms to go away and start feeling better? Any thing you can recommend I do or try? 

I apprentice just even getting to talk to someone. I would love thank everyone for that. 

Hi,

I’m trying to figure myself out too. I’m celiac 5 yrs. sometimes I need to run home to bathroom or find a bathroom. Stomach upset; burning when I go; itching at night; fatigue; joint issues. 

I still have dairy and milk. Wondering if I have other issues other than celiac. 

Some time I’m constipated which makes me crazy. I need a balance. Still trying to figure it out.

 

[cyclinglady]

On 8/7/2019 at 4:20 AM, KS68 said:

Hi,

I’m trying to figure myself out too. I’m celiac 5 yrs. sometimes I need to run home to bathroom or find a bathroom. Stomach upset; burning when I go; itching at night; fatigue; joint issues. 

I still have dairy and milk. Wondering if I have other issues other than celiac. 

Some time I’m constipated which makes me crazy. I need a balance. Still trying to figure it out.

 

Have you had follow up celiac disease testing?  This can help determine if you are actually complying with the gluten free diet.  Ask your GI for antibodies testing.  Consider a repeat endoscopy (maybe you have something else besides celiac disease).   Maybe you are not really gluten free?  Do you eat out ever?  Eat a lot of processed foods?  Consider the Fasano diet for a few months.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1