Rectal pain

[Mell2]

I will start by saying how absolutely confusing this disease is! I have a medical background, being a pharmacist that worked clinically in hospital for years and in government making recommendations on drug listing decisions for many diseases. This however, has proven to be ridiculously difficult to find answers on. Now here we are in the midst of a COVID-19 lockdown and I'm supposed to have a colonoscopy and endoscopy on two separate visits soon. Not even sure if it be done, so trying hard to figure this out on my own.

I will try to condense this as much as possible. I've been having symptoms of a GI disorder for a number of years. Onset with extreme nausea and abdominal pains, intermittent diarrhea and constipation. Started Pantoloc, which helped but not completely. Suffered with that for over a year with no diagnosis or doctors telling me I just have heartburn. Then one day...rectal pain. I thought it was a hemorrhoid, but it hasn't gone away since last October. I've tried suppositories - no luck. I've tried ibuprofen and that kills my stomach. As well, since then, I've had attacks of horrible rectal pain. I think they are spasms and last for about 15 minutes. And the pain, wow. I can't move and I can't hold back the tears. I've never quite felt something like it. I believe it is proctalgia fugax and linked to various things like inflammation. They have the potential to scare the crap out of someone. I've even looked down there to see what's going on, and it's not pretty. Red/purple, internally swollen sort of like a hemorrhoid but not located to one spot and not bleeding. I was negative for blood in stool but had a positive calprotectin (non-specific indicator of inflammation), negative celiac tests but that doesn't always mean anything. So, it can be two things, inflammatory bowel disease (IBD) or Celiac's. I'm at risk for both. My brother just got diagnosed with Celiac's and I have ankylosing spondylitis which is a risk factor for IBD. I've cut out gluten a while ago and I have significantly less nausea and little to no abdominal pain, but still have rectal pain. I keep discovering hidden gluten in things that may have slowed down any ability to heal. I thought I had Crohn's at one point and reintroduced gluten and had another attack a few days later and instant nausea. Switched right back to a gluten free diet after that. My gastroenterologist thinks I have Crohn's, but if I had Crohn's, you would think my symptoms would be more severe i.e. blood in stool, pus, abdominal pain.

Diet wise, dairy is my friend. So soothing. Veggies and fruits make me feel great. Grains, even gluten free grains..i'm not so sure.

My question to all is:

Do people with Celiac disease get inflammation of the rectum with pain and constant ache? (heat helps) if so, how long before it goes away? 

Maybe I have both..that would be awful

[Ennis-TX]

Celiac is in the small intestines...But I ended up with Ulcerative Colitis a few years after my Celiac Diagnosis. Many often have multiple Autoimmune issues. I wonder if the small intestines moving stuff through too fast for years with Diarrhea could lead to issues in the large intestines? Just a thought.

[cyclinglady]

I am sorry that you are unwell during this COVID-19 crisis.  

You can have more than one autoimmune disorder as Ennis mentioned.    Frankly, I think medical should stop labeling autoimmune disorders.  Maybe just call it Autoimmune with a current emphasis on say, the thyroid or small intestine.    Of course, treatment will vary depending on which body part is being damaged.  

But how to help you?  If you are able to get the endoscopy, know that if you want to determine if you have celiac disease, you will need to be on a gluten diet two weeks prior to the procedure.  But whether you have celiac disease or not, I think you already know that gluten can be a problem for you.  FYI, I only test  positive to the DGP IgA.  Do not rule out celiac disease if you only had the TTG test (or even the EMA).  

Know that not everyone has “classic” symptoms of Crohn’s.  I could have sworn that my niece had celiac disease.  This was firmly ruled out with repeated celiac blood panels (complete tests) and an endoscopy and colonoscopy.  Finally, her 4th GI ordered a pill camera.  Her damage from Crohn’s was found beyond the reach of both scopes, severe enough that the camera almost got stuck!   Her parents were perplexed as she only had attacks once or twice a year.  Otherwise, she was fine (she is little like me).  She is doing well now on medication.

A few years ago, I had a hidden gluten exposure.  I could not recover.  I went on a  very strict diet (no processed foods).  Still was having issues.  A repeat endoscopy almost a year later revealed I had healed from celiac disease, but that I had Chronic Autoimmune Gastritis.  I am still careful with my diet as my Gastritis can flare for no reason (it is active now with all this stress!) I am sharing this because I realized that not all things are due to gluten.  You can have other health issues.  

What if you are not able to get the scopes at this time?  Consider acting like a celiac and a person who has Crohn’s.  Consider sticking to your modified diet.  Research the autoimmune Paleo diet.  Scripps in San Diego conducted a tiny, tiny, study on IBD patients who achieved around a 78% remission within weeks.  Pretty amazing.  Obviously, more studies are needed, but treating with real (non-processed) food probably can not cause harm for a few short months.  

https://www.ncbi.nlm.nih.gov/pubmed/28858071

The diet temporarily eliminates dairy though.  So, use your own judgement.  It might be worth just consuming meats and veggies to see if it works and then add it back in.  I know that I was lactose intolerant for years, but once gluten free, I was able to get it back.  

I hope are able to figure it out, especially in these trying times.  I do worry about those who are on immunosuppressive medications while COVID-19.  Do your research and weigh the benefits and risks for you, as individual, with the help of your healthcare team.  

[GFinDC]

Hi,

I don't think that rectal burn is a typical symptom of celiac, but the symptoms can vary widely.  Celiac attacks the small intestine, and can cause mal-nourishment.  But it can affect the skin, joints, nerves, brain and almost anything else you can think of too.

If you are finding surprise gluten in foods then you are probably not eating a simple, plain, whole foods diet.  Some foods to avoid at the beginning of the gluten-free diet are dairy, oats, sugar, and carby foods as well as wheat, rye and barley.  Try to stick with whole foods that you cook yourself at home.  At the grocery look for foods with 3 ingredients or less.  And don't eat out for 6 months or so.

A simple diet with few ingredients in dishes is helpful.  Even gluten-free breads can bother people at first.  You could try Mission brand corn tortillas as an alternative to bread.

[Mell2]

Thank you all for your helpful replies! if completely forgot that Celiac is supposed to be the small intestine. No wonder my GI guy thinks I have Crohn's. I question everything though..so always open to the fact that there are outliers, things that we haven't discovered yet, etc.

So as an update, I have happy news. I made some changes in my diet similar to what some of you are suggesting. I cut out pretty much all grains including gluten free breads as they were bothering me. I kept a few things in my diet that I felt confident weren't an issue like Chex cereal and Doritos, to keep me sane. I also discovered additional gluten contamination in foods such as spices that may have been giving me ongoing issues. Basically, I have a very paleolithic diet with the exception of dairy I suppose. I have been very careful with my diet for the past week and kept it very simple. And I have to say, I was completely surprised by the results. The rectal pain improved dramatically. It's barely there right now. So very odd. I'm really starting to question whether I have Crohn's now. My stomach doesn't hurt, my arthritis is improved, eczema on my face is almost gone. Additionally, I forgot to mention before that I was also diagnosed with interstitial cystitis, with blood in my urine a few years ago. To me, there are just too many autoimmune things going on in my body for me not to question a broader problem like diet. Although I know this doesn't really prove anything, it's promising. Maybe the message to all should be not to assume everything is autoimmune (like CyclingLady said) and investigate diet more diligently. I have to say, I am beside myself with happiness. I hope this change is permanent. We shall see and if so, wish I could help anyone else who has ever experienced this.

Edited March 31, 2020 by Mell2

[cyclinglady]

Please do not discount Crohn’s just because you see improvement on a gluten free diet. The Autoimmune Paleo Diet is also gluten free and is prescribed for any autoimmune disorder and was tested on Ulcerative Colitis and Crohn’s patients with great success (though a tiny study). Remember, that autoimmune disorders are systemic.  They can affect any part of the body.    Crohn’s or celiac disease suffers can have skin or joint issues.  Eyesight is affected by Crohn’s and other AI disorders.  The list goes on.

I really think we should stop labeling autoimmune to specific body parts.  A doctor might say, “Mrs. Cyclinglady, you have autoimmune disease which has caused several problems like anemia and osteoporosis.  Right now it is attacking your small intestine.  In the past, we used to call it celiac disease.  Your thyroid is already damaged from autoimmune.   Let’s work to calm down the autoimmune response by having you go on a gluten free diet, eating “real” food, reducing your stress levels and exercising moderately.  Let’s try to prevent other body parts from being damaged in the future and perhaps we can avoid medications which can be great, but often have serious side effects”.  

[Mell2]

No worries about discounting Crohn's (tests are all booked) although i'm pretty confident it's Celiac now. My calprotectin is too low and my symptoms improve then worsen like i'm being glutened. Not very Crohn's like at all. Having said that, I discovered that my brother who has Celiac's went through all the complaints i noted. I don't know why I didn't ask him sooner and he never mentioned anything before. He had the same proctalgia fugax symptoms at night, etc. I was ecstatic to hear this and confirms even more my suspicions. I also discovered more products that are contaminated with wheat. Very annoying. Eating safely as a Celiac is a very hard thing to do. I wish someone would compile a gluten free list of foods specific to Canadian grocery stores that everyone is familiar with, especially store brans like compliments and PC. A couple types of mustard, chocolate bars, candy, yogurts, etc that aren't typically labelled gluten free but are considered safe. Maybe there is such a list but right now I have to google each product and can never find anything about store brands.

Edited May 4, 2020 by Mell2

[Mell2]

Well I've had inflammatory bowel disease ruled out, as I expected. I have also now discovered that i'm not only unable to eat gluten but also corn. I kept reacting to gluten free cereals and pizzas which has forced me to cut out a lot of things. I've heard of corn being an issue for a few Celiac patients but definitely not common. It's so unfair to have cut out so many things. I do feel much better though. Does anyone know if a corn intolerance goes away or can be tested for? I'm assuming no.

[KylieG]

On 7/15/2020 at 1:45 AM, Mell2 said:

Well I've had inflammatory bowel disease ruled out, as I expected. I have also now discovered that i'm not only unable to eat gluten but also corn. I kept reacting to gluten free cereals and pizzas which has forced me to cut out a lot of things. I've heard of corn being an issue for a few Celiac patients but definitely not common. It's so unfair to have cut out so many things. I do feel much better though. Does anyone know if a corn intolerance goes away or can be tested for? I'm assuming no.

Hi there. I know this was a while ago but did the doctor end up diagnosing you with anything? Any reason for the rectal pain? Some of your symptoms sound very similar to what I’ve experienced.