New to site, not new to issue

[RonMc]

Hi all,

  Diagnosed April 2018.  I have been relatively gluten free ever since.  So I have Celiac but not to the extent of most, it only messes with my intestine lining.  I do not get ill or feel bad when I ate bread and all the food that tastes sooooo good.  With that said, have had diarrhea and soft stools about 7/10 days ever since.  Went to my doctor, gave me pills, went to Mayo clinic and all was great.  I feel 1000x worse eating gluten free than I ever did eating gluten.  Looking for answers, talked to dr about BM's and more pills.  Not down with that, anyone here experience this?

 

Ron  

[cyclinglady]

Maybe time for a repeat endoscopy.  It is common to develop other autoimmune disorders like IBD (Crohn’s, Ulcerative Colitis) or illnesses like SIBO.  Rarely, cancer occurs, but it has happened to our members.  

What pills were prescribed?  The only known treatment for celiac disease is a gluten free diet.  What did the Mayo Clinic say?  Did they diagnose you or are you getting follow-up care with them?

Get checked out.  Stop cheating on the diet (you know that already).  Every time you cheat, you can cause damage.  Each cheat sets you back, so you may not have healed at all.  It is why being on the gluten-free may not be helping you and you may feel worse.  Gluten triggers the autoimmune response that can last for weeks, months or years!  It is not just consuming gluten and once it exits your body, you are fine.  Many celiacs experience withdrawal symptoms too.  Weird, huh?  

It takes time to heal.  Most members  take a year or more to heal because of either systemic damage or not mastering the diet.  

I wish you well!  

Edited November 6, 2019 by cyclinglady

[RonMc]

Year before last had an abdominal pain that no one could identify or fix.  After primary doctor, oncologist, surgeon I ended up at gastro.  No digestive issues, regular daily and ate everything.  Gastro did two endo and colon last year.  Removed all polyps and was gluten free ish between visits internals looked better.  From April to June not one solid bowl movement, figured body adjusting.  Doctor could not tell me why and gave me some pill that was for low fat in stool.  By November decided to try Mayo, confirmed with celiac and nothing else was wrong.  Retested all samples and just celiac the entire time. 

 

The pills were for fat not celiac.  I eat clean, some restaurants are iffy but order from gluten menu every time.  I NEVER had the digestive issues until Gluten free.  1 yr 7 mon should have adjusted by now.  The pain was a side effect of a heart med, stopped taking it and now no pain.     

[GFinDC]

Hi RonMC,

It is often reported by forum members that their bodies react more strongly to minor gluten exposure after going gluten-free.  Initial recovery can take varying amounts of time, but 18 months or longer is not unusual IMHO.

Some suggestions follow.  I would suggest you skip restaurants until you are feeling better for a few months running.  There's always a chance of cross contamination in them.

It's helpful to eat a simple diet of whole foods you cook yourself.  Skip most of the processed gluten-free foods for a while until you are healed up.

Avoid all dairy for now.  Celiac impairs the ability to digest dairy sugar (lactose).

Celiac disease is an autoimmune digestive condition.  So most of the time symptoms are related to diet.  That's always the first place to start.

It's possible to develop additional food intolerances in addition to wheat, rye and barley that are the culprits in celiac.  An elimination diet can help find them.

Some alcoholic beverages are safe and some aren't.  Also, kissing a GE (gluten-eater) should only be done after they have brushed their teeth.

I hope you feel better soon!

[cyclinglady]

Wow,  you have been through a lot!  I am glad you finally have a diagnosis.  

GFinDC gave you some excellent advice.  I think you need time to heal.  

 

[RonMc]

Here is a twist.  On my birthday I eat like a normal person.  I eat anything including a chocolate cake.  Feel great, eat gluten free and feel like crap......      Trying to figure out why. 

 

I cook gluten-free and wife tolerates it to make me feel better.  I can't bring food to work most times so not a great option. 

 

If I have celiac and no outer symptoms then eat gluten free and have the celiac symptoms, why and how???  

[cyclinglady]

Going gluten free should not make anyone sick.  No one needs gluten in order to survive.   Many cultures never consume gluten.  That is just common sense.  

If you do have celiac disease, you can be asymptomatic.  I just had anemia no GI issues.  Went for a colonoscopy (yeah, hit 50).  My GI looked at my chart, saw the anemia and ordered the celiac disease blood tests.  But after my diagnosis, gluten exposures  caused severe symptoms.  I knew the diet well as my hubby had been gluten-free for 12 years prior to my diagnosis, so I was not making rookie mistakes.    Classic GI symptoms and a new autoimmune disorder developed as a result of some exposures obtained from restaurant food (cross contamination) or possibly a mid-labeled antibiotic.  

I do not eat out except at 100% gluten free restaurants.  My goal is to prevent a 4th autoimmune disorder and/or cancer.  

My bet is that you are still getting gluten exposures.  Remember, it takes time (days) for antibodies to start ramping up.  Months or years to calm down.  Some celiacs react faster with symptoms and that might be due to cytokines.  Pretty recent research.  Google it.  So, you eat the wheat cake and are fine. Then you go gluten-free and you feel bad.  It was the wheat cake.   It just took you a while to ramp up the autoimmune response.  

Your best defense is to research and understand celiac disease.  

[GFinDC]

Well, another suggestion then.  Stop eating gluten on your birthday, or any other day too.  Celiac disease is not a joke.  Just because it affects diet does not make it a minor condition.  The immune reaction can cause damage to any part of your body.  People with celiac can develop a skin rash called DH (dermatitis herpetiformis) that is very hard to control.  There is a section of the forum dedicated to DH.  They can sometimes get gluten ataxia and have trouble walking / coordinating muscles.  Thyroid problems can occur too.  Joint pain and hair loss also.  If you have celiac you have a higher than average chance of getting any other autoimmune condition too.

People tend to develop additional food intolerances if their guts are constantly irritated.  Our immune systems react to germs so small you can't see them with the naked eye.  A crumb of gluten is the size of a house by comparison to a germ.  So yeah, little tiny amounts of gluten contamination can make and keep you sick.

It sounds like you need to concentrate on cleaning up your diet and any cross contamination.  But unfortunately celiac disease is a lifelong condition and you can't go off the diet ever.   Your digestive system is not like other people's and may be easily irritated.  Try to make it easy on your GI tract to heal.  We can be our own worst enemy sometimes when it comes to celiac disease.  It's very easy to make mistakes and get glutened.  Cross contamination is a real problem.

Edited November 7, 2019 by GFinDC

[Ennis-TX]

...Ironically when I was first diagnosed gluten was making me constipated.  You might have a similar issue when you eat it directly then after your loosen up? It can take months for your bioflora in you gut to adjust to a new diet so you might just be getting loose stools because your not sticking to a gluten free diet long enough to regulate.
You really need to read the newbie 101 section and go 100% gluten free no cheating for months to heal...every time you get CC or cheat your going to have issues for a average 6 weeks so your just resetting the timer.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
I ended up with a whole list of other foods I can not eat, I ended up with other AI issues, and food allergies (see my signature like many others). The more your cheat, or get CC issues the more likely your body will start reacting to other foods or developing other issues and you will most likely end up on a VERY limited diet.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
I also suggest you go to a whole foods only diet, and keep a food diary starting now...you probably already have reactions to other foods and with a elimination diet you will see.
https://www.wikihow.com/Keep-a-Food-Diary

 

PS You can enjoy many of the so called foods on a gluten free diet through different means you can see our whats for dinner chat, or check some food blogs on this site or other gluten free dedicated food blogs. Heck I eat gluten free, paleo, and sugar free/low carb and still can make cakes, cookies, pizza, etc.  >.> although right now other issues have me almost completely carnivore keto but that is not celiac related.