First Time Posting And Desperately Seeking Answers And Support

[Dswaterman]

Hello all. I am posting today in hopes of gaining some knowledge and support as I battle what appears to be a worsening condition of celiac.

I am a 38 yr old male who was diagnosed with celiac back in March of this year. Previous issues with diverticulitis and had surgery to remove a piece of my colon. Went to my doc as I had lost. 7 pounds. I weighed 163 before so I have always been skinny.

After endoscopy and colonoscopy biopsy came back with early onset of celiac. Since then I have lived gluten free to the best of my abilities. I know I will still ingest on occasions when I am out to dinner and it becomes impossible to completely avoid.

The first month or two I had no problems or issues, since then, the stomach pains and frequent bowel movements have become more common place.

Two weeks ago I had flu like symptoms which resulted in 48hrs of diarrhea and nausea. Complete exhaustion and weight loss set in. Recovered and was back to normal with no concerns.

Last night woke up at 4 and started with diarrhea again. Still battling as I am writing this now. Immodium does not eliminate anymore but only slows it down.

Just noticed a tiny but of mucus in my stool. Obviously with my health issues I am fragile and concerned for my future, wife and child and a lot to live for. My gastro wanted me back for another endo and colonoscopy but it's so cost prohibitive I have been reluctant To go. Now I feel there is not much choice in the matter.

Seems as though a lot of you all have similar issues and I was hoping to get advice on successful tempering of these symptoms. It seems living gluten free is not always enough and I am hopeful someone has found something that reduces the recurrence of these symptoms,

It is now affecting my daily life with work, family and friends.

Thanks for your time

[kareng]

I would suggest you not go out to dinner for a while (a few months).  Make sure you are really gluten-free.  A little gluten will keep you from healing.  Also, are you eating dairy?  Lactose can be very hard to digest until you are healed.  Some adults, Celiac or otherwise, cannot digest it at all.  

 

With your previous issues, it could be something else.  But I really think you should give the gluten-free diet a very very careful effort.

[LauraTX]

Welcome to the forum!  It definitely sounds like your system needs a resting period, especially after the illness you had two weeks ago.  Karen is spot on with her recommendations, a re-evaluation of what is going down the hatch is in order.  Limiting eating out will especially help to limit exposure.  It may also be a good idea to go ahead with the scopes to see if there are any other issues that need addressed. 

[SMRI]

It is imperative that you eat gluten free all the time or you won't get better.  Go out to eat, but only go places that can guarantee gluten free eating.  Not sure where you live but places like Red Robin, Bonefish Grill, etc. have dedicated practices to ensure no cross contamination.  More and more local restaurants have sprung up all over that are the same. Go through your house, remove anything that is even questionable.  If your family is not gluten-free with you, maybe they need to be for several months until you heal and then maybe slowly allow it back in the house, in a contained area?  It's a lot of work and practice.  I'm still learning but it's about creating a habit of looking before you eat.

[Dswaterman]

Thanks for the feedback everyone. I do travel for work but tend to go to nice places and will request gluten free items. I live in Atlanta so it's easy to find places that support gluten free. My family is supportive and while there may be items with gluten in the house, we do a good job keeping them apart and really eat a gluten free diet together. I have always had a whole food type diet so eliminating breads, beers, and flour were the only issues I had to deal with.

Understand there are hidden culprits as well. I will refocus and not eat out when possible. I will try lactose and will be seeing my gastro this week.

[Cara in Boston]

My guess is that you are not 100% gluten free.   You are eating like a person who is avoiding gluten, but believe it is not entirely avoidable.  It is.  There are steps you can take - including packing your own food if necessary - to be 100% gluten free.   When traveling, I eat in my room (food that I have packed) and then just get a salad or just drinks when out with others.  I do not trust my health to others, even if they claim they know what they are doing.

 

We do have a couple of places where I feel comfortable eating out, but I have researched them and talked with the staff each time.

[GFinDC]

Hi Dswaterman,

 

It is somewhat common for people when first going gluten-free to develop more noticeable symptoms as time goes on.   The immune system may get more sensitive to gluten, or something else might be going on, like symptoms being more noticeable since they are less frequent.  The immune system is pretty serious about keeping us alive.  When it detects an invader it goes on the attack, and doesn't stop for weeks or months.  So each time you let a little gluten slip into your diet you are priming the immune system for another round of attack.  Even if it is just a little unavoidable gluten at a restaurant, the immune system don't care.  It's going to go full bore boogie on it.

 

The way to temper symptoms is to avoid them in the first place.  To stop taking unnessecary chances when eating out etc.  To plan ahead and bring your own food when needed.  Or just settle for a salad or fruit if that's all you can get.

 

It's a learning process going gluten-free.  The simpler you keep your diet the less chance of a slip-up there is.  It also makes sense to double-check everything you consume.  Are your vitamins and meds gluten-free?  How about you coffee creamer or tea?  Spices?

 

Getting better at being gluten-free means making some changes in our approach to eating.  For a celiac, eating gluten-free is a medical diet, not an option.  A good way to start is to stick with whole foods you cook yourself at home.  That way you have only your self to question about ingredients.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/
 

[coffeechat]

Hello all. I am posting today in hopes of gaining some knowledge and support as I battle what appears to be a worsening condition of celiac.

I am a 38 yr old male who was diagnosed with celiac back in March of this year. Previous issues with diverticulitis and had surgery to remove a piece of my colon. Went to my doc as I had lost. 7 pounds. I weighed 163 before so I have always been skinny.

After endoscopy and colonoscopy biopsy came back with early onset of celiac. Since then I have lived gluten free to the best of my abilities. I know I will still ingest on occasions when I am out to dinner and it becomes impossible to completely avoid.

The first month or two I had no problems or issues, since then, the stomach pains and frequent bowel movements have become more common place.

Two weeks ago I had flu like symptoms which resulted in 48hrs of diarrhea and nausea. Complete exhaustion and weight loss set in. Recovered and was back to normal with no concerns.

Last night woke up at 4 and started with diarrhea again. Still battling as I am writing this now. Immodium does not eliminate anymore but only slows it down.

Just noticed a tiny but of mucus in my stool. Obviously with my health issues I am fragile and concerned for my future, wife and child and a lot to live for. My gastro wanted me back for another endo and colonoscopy but it's so cost prohibitive I have been reluctant To go. Now I feel there is not much choice in the matter.

Seems as though a lot of you all have similar issues and I was hoping to get advice on successful tempering of these symptoms. It seems living gluten free is not always enough and I am hopeful someone has found something that reduces the recurrence of these symptoms,

It is now affecting my daily life with work, family and friends.

Thanks for your time

Hi I am newly diagnosed and have had diarrhea that comes and goes.   I am starting to keep a food journal to help as I discover how to best live and enjoy life with this.  Back to basics has been so far the best way for me to eat, fruit vegetables fish and beans.  Even gluten free crackers do not sit well.  Do you drink coffee?   Went to my library and they did not have anything outside of a gluten-free diet .  You are working in the dark as we all are.  

[Dswaterman]

Thanks for everyone's discussion points and suggestions. They have all been extremely helpful in my continued battle with celiac. I have gone back to my gastro after the bouts I suffered with two to three weeks ago. She is also concerned and frustrated with my symptoms as she believes that they should be more under control based on my dietary habits.

 

She is confident in the diagnosis but wonders if there is an underlying problem. She provided some other ideas, one of which was food allergy testing. I got this done last week and all came back negative, including wheat. Allergist said Celiac patients do not usually show a positive indicator on wheat for allergies.

 

Gastro also suggested a camera pill to review the middle section of my colon, which cannot be reached by endoscope or colonoscopy.

She put me back on VSL#3 Probiotic, which is expensive, but focused on colitis and IBD symptoms.

 

It was also suggested that I try acupuncture as a way to help heal my body. I went yesterday and I can say it was very interesting and while not curing, may be an aide in a long term healing process.

 

As we all know, western doctors are good at finding illnesses and treating  them with medicine, but they do not do a good job in finding ways for our bodies to heal. I am open to trying anything at this point to turn this around.

 

Interesting as the most important advice I have received has been on this forum. A simple refocus on my food intake has left me with no problems for two weeks, until today. Did notice an increase in bowel movements and unfortunately had some mucus in my stool.

 

I would say the strong cup of coffee today set this off however, the mucus throws me off.

Gastro is going to do more labs to look for Crohn's markers, although my biopsies and scopes revealed neither crohn's nor colitis.

 

Would like everyone's opinion on resulting Crohn's/Colitis after Celiac. Anyone find this to be true? If so, how has this increased the complexity of tackling the diseases.  Stats indicate the older you are after diagnosis, the greater the risk of another chronic condition. I am hopeful this is not the case but signs continue to point to some other underlying condition.

 

Thanks for everyone's advice. It is greatly appreciated.

[cap6]

I would like to suggest a book called Digestive Health With Real Food by Aglaee Jacob.    I suggest it as you said that your dr is concerned over other food allergies/intolerances and because you mentioned that you are into whole foods as opposed to processed.  The author has a great approach on elimination diet and the use of whole foods in healing the damaged gut.  She has great knowledge on those foods that can cause damage to our already damaged gut.  Foods that tend to ferment in there, etc.  and of course she is gluten free.  It has helped my partner who is not celiac but has several digestive issues.  Just a thought!

[GFinDC]

Hi DS,

 

I can't say I know anything about Crohns/colitis developing as a result of having celiac disease.  But some of the same genes are involved in many autoimmune conditions.  My younger brother had both Crohn's and celiac disease.  I have only celiac, so it isn't something that is 100% linked at all.

 

I think you are kinda getting the cart before the horse looking for new disease conditions / symptom causes now.  Recovering from celiac is not a 2 week or 2 month process.  Six months is more like a good starting point at getting back to normal for many people.   A year or more is not unusual tho IMHO.  And recovery doesn't mean cure, our guts/immune system will always be sensitive to the tiniest bit of gluten.  Your symptoms sound like normal early gluten-free diet issues to me.  Some people are different and recover much quicker of course, but other people don't.

 

For myself I learned the slow way, trying to eat many things that were not really safe.  Being a little less than 100% gluten-free just slows the healing process down.  Taking risks is not a great idea at the beginning.  Eventually I learned to avoid most processed foods.  And thru elimination diets discovered some other food intolerances that were causing me problems.

 

Basically, when you find a safe food, stick with it.  Limit your number of foods to a few that you know are safe and slowly add more.  It's a little boring way to eat at first, but it beats being sick all the time.  Slowly adding more means adding 1 new food to your diet a week.  Adding more than one new food a week confuses the issue.  You can't figure out which food made you sick then.

 

Simplicity in meals is good for us.  At least at the beginning when learning.

[hazelnutty42]

I have Celiac and colitis. GI says the colitis is probably a result of the Celiac. As a result, I cannot just be "gluten-free". It goes way beyond that. I have had to be VERY strict in my diet while healing. For me there is no ordering "gluten free" at restaurants. I have to make most of my food at home. I love going out to eat and I don't want to miss out on being social so often I will eat at home before I go and then order something I know will not be a problem - like a salad with olive oil.  For now I am following the Anti-Inflammatory Protocol and it works very well. Not easy but works. And you do get used to it. 

[Dswaterman]

All:

 

Thanks for the latest updates and advice. I can honestly say since my initial posting and member recommendations to refocus on my diet and what I eat, I have truly passed the hurdle of not knowing when my next episode is going to be. I have been feeling much better for two months now and feel like its only a rare occasion that I may have a bout with gluten ingestion. 

 

My energy levels are still not what they used to be, but that could be age and lack of sleep. My Gastro seemed to think I would see increased energy levels once I rid myself of the toxins.

 

I am struggling to gain weight however and its frustrating the heck out of me. Always hovered around 163, and now just a mere 155. I eat a very balanced diet and do not want to eat more meat just to gain weight.

 

Any suggestions from the group as to packing on additional pounds? Is there a consensus that weight loss is typical and can also be a challenge to put back on with the disease?