dysfunctional bowels....

[Fredo]

Greetings...   My subject is a not so fun one to discuss but...  I have been on a gluten free diet for 4 going on 5 years now.  I am still suffering from diarrhea...  I still get periodic pain in my lower left gut area, like a build up, and then the diarrhea.  It's not like before while I was still eating gluten.  Most, if not all, of the the other symptoms have either disappeared of been 90% improved.  I have complained numerous times to my care provider and he just simply does not seem to have anything to say about it.  

It's considerably painful and affects my entire body, an over all ache occurs, I experience a clamy like sweat and my joints become sluggish and sore to movement...  At first thought I was concerned that I may have been glutened, but this can flare during the most diligent of dietary strictness...  

Anyone else seem to be dealing with this prolonged effect of late diagnosed Celiac?

[trents]

Hi Fredo,

It's very common for Celiacs to have other GI problems not related to gluten consumption such as colitis or IBS. In addition, Celiacs often develop other food intolerances such as for dairy or soy. However, the symptoms you describe in the second paragraph of your post suggest to me something something systemic and/or autoimmune related.

Does your insurance allow you to directly make appointments with specialists? If so, I would be looking at hooking up with a gastro enterologist or a rheumatologist (doc for auto immune diseases) or would press your primary care doc to make such appointments.

Do you have celiac disease? Has this been confirmed by endoscopy/biopsy? You do not actually say you have celiac disease, only that you are trying to eat gluten free.

[Fredo]

43 minutes ago, trents said:

Hi Fredo,

It's very common for Celiacs to have other GI problems not related to gluten consumption such as colitis or IBS. In addition, Celiacs often develop other food intolerances such as for dairy or soy. However, the symptoms you describe in the second paragraph of your post suggest to me something something systemic and/or autoimmune related.

Does your insurance allow you to directly make appointments with specialists? If so, I would be looking at hooking up with a gastro enterologist or a rheumatologist (doc for auto immune diseases) or would press your primary care doc to make such appointments.

Do you have celiac disease? Has this been confirmed by endoscopy/biopsy? You do not actually say you have celiac disease, only that you are trying to eat gluten free.

Unfortunately no insurance....  and yes, endoscopy biopsy determined I am celiac...  Also had a colonoscopy done and had nothing show up...

[trents]

No insurance. That makes it tough to get specialty care.

I guess the only thing I would suggest is keeping a food diary to see if there is an association between things in your diet and these bouts of bowel dysfunction you describe.

[NNowak]

If you’re gluten-free already, next step is to identify other factors that irritate your system. Keep a diary of food, meds, symptoms and you may find a pattern. I’ve dealt with your symptoms and many others for most of my life, and have been a diagnosed Celiac more that half my life now. The GIs can’t seem to find a resolution (just finished with my 3rd) and I’ve given up pursuing that as an issue. It’s extremely painful (vagal reflex causes some of the symptoms we share) and highly inconvenient reducing the quality of life if we let it. It was suggested that my nerve endings are over sensitive.......perhaps I should talk to the office social worker. So I’m assuming it’s not life threatening. 
 

It’s good to use your resources and try to identify for yourself what triggers you may have. I always stress research because an autoimmune disease is difficult and we need to be our own advocates. Keep in touch so we might learn from your journey. 

[Ennis-TX]

Um have you had a colonoscopy also hmm, My UC will cause really painful BMs mostly liquid in form when flares happen, other symptoms that set it apart for me but will vary with people was blood in stool and on the TP and mucus.  I got the UC diagnosed a few years after my Celiac, it is iffy and seems to have it's own triggers. But it normally shows up on the colonoscopy.

Food diary will be your best bet, avoid spicy foods, dairy, oats. If your eating anything tough to digest and rough textured like whole nuts, or seeds this could be a issue (I have to use fine flours and nut butters as whole nuts irritate my gut now days).
Few things that might help to some degree, Aloe Vera Juice, Slipper Elm Capsules, Marshmallow Capsules, as they can coat and soothe a irritated gut....reminds me I need to get more myself.

https://www.herbwisdom.com/herb-slippery-elm.html
https://www.herbwisdom.com/herb-marshmallow.html
https://www.herbwisdom.com/herb-aloe-vera.html
 

Edited January 8, 2020 by Ennis_TX

[NNowak]

I just had an EGD and colonoscopy last month. I returned to my original GIs office after my second GI retired. There was zero information given to me other than a simple lab report stating esophagitis, hiatal hernia and peptic duodenitis. Eosinophils and H.Pylori were excluded. My initial appointment with the PA had an extensive list of issues to rule out. Any follow up questions with the office was not appreciated by the nurse or doctor. The doctor actually called me himself this past week to make sure I understood my issues were not GI and I need counseling or crazy meds (in a nutshell). My elevated ferritin and granulomatous changes in my liver were never addressed.
 

My point is that docs don’t always have the answers and a fair amount of autoimmune issues go untreated. My younger sister is a celiac with hemochromatosis and chronic pancreatitis - she lives an hour away from the Cleveland Clinic. Her story is horrifying, but I’ll sum it up to say she had two major health crises that could have ended in death very easily due the docs blowing her off. Her gallbladder burst causing peritonitis, and then her blood wasn’t being managed resulting in a very tenuous situation as her placenta detached at home resulting in an emergency preterm delivery in the back of an ambulance. 
 

We have to be our own investigators and not feel “stuck” or left to feel “crazy” when docs don’t find an autoimmune issue relevant. My father also has Crohns and is extremely healthy at age 75. He was diagnosed in his 30s and almost died twice. Research and persistence gave him his health. 
 

Another area of medicine is functional medicine. This specialty focuses on nutrition and hormones. The bloodwork, stool and saliva is very specific and sent to special labs. Each patient is an individual with specific needs, which requires time with the doctor to identify. Insurance won’t cover this specialty, but the out of pocket expense is well worth it. This is the route I have taken. 
 

Another diet to look into is low FODMAP. My father follows this and a gluten-free diet to control his Crohns symptoms. Low B12 and Folate can cause diarrhea as well. If you can find a methylated vitamin B complex, I’d highly recommend it. 

[Fredo]

20 hours ago, Fredo said:

Thank you to all of your replies!  I have a few ideas to follow now!  Thank you...  And as I go along, I will certainly post in the future!  I think it is vital that we all share related all be it occasional obscure details in our journeys... Thanks again,  be well...