Intermittent, Seemingly Random Digestive Symptoms - Could It Be A Gluten Intolerance?

[ldm789]

Hi everyone,

 

I'm new to this board, and to the gluten free lifestyle as well.  I really hope someone can help me with this, I'm very confused and in need of some sort of an answer.  Any feedback is much appreciated.  Just a (hopefully) quick summary of what got me to this point.

 

Up until about four years ago, I could eat whatever I wanted (I'm 27, 5'6", 115lbs, otherwise healthy). Then it seemed, and it took me awhile to catch onto the fact that it was a problem, I started experiencing extreme stomach pain which after several minutes would turn into me having diarrhea, which would alleviate the pain and after that (for the most part), I would go back to feeling completely fine.  After I starting taking notice I realized it would happen, on average, every one or two months with the longest time between it happening being about 3 months.  I did my own research and stumbled across an IBS website which led me to cutting many things out of my diet, eating mainly chicken, bagels, bread, cereals, rice etc. I stopped eating red meat, fast food, anything deep fried, high in fat and basically anything questionable. This seemed to help slightly with the pain, but the randomness of the stomach bloating, feeling a gurgle and having to run to the bathroom was still occuring, once again on average every month and a half to two and a half months.  I had bloodwork done at which point I thought the doctor had tested me for celiac (this was back in 2011) but when I called his secretary to confirm, she said it didn't look like he had.  I eventually went to see a holistic nutritionist who put me on probiotics after we realized I had been on antibiotics for several years prior to try and clear up my acne.  She also put me on a digestive enzyme to take.  This seemed to help a bit but I became more and more paranoid about food and scared to go anywhere for fear that my stomach would randomly hurt and I'd have to run to the bathroom and not make it.  So basically my diet for the past two or three years has been primarily bagels, sandwiches, chicken burgers & fries (the kind you can bake in the oven), pizzas (I would buy just the crust and make my own and put on only cheese and veggies), pasta, potatoes and veggies.  Since I've still been experiencing the same symptoms I went into the local health food store and started telling the lady there my problem and she suggested I see a naturopathic doctor, which I did.  We sat for two hours and I told her my entire history about never having problems before, how four years ago it started, during a stressful time in my life (graduating university, breaking up with my first serious boyfriend, running out of money, work problems).  Not even five minutes into our consultation she told me she believes I have a gluten intolerance and I've been on a gluten free diet for three weeks now.  It's hard for me to know if it's working or not where my only real symptom (that disrupted my life anyway) is the pain and diarrhea and that only happens every couple months.  I do feel like I have more energy and I definitely feel much happier (although that may just be because I'm hopeful that this is finally the solution) and my bowel movements are certainly a lot more frequent (in a good way) and a lot less hard and piecey, so I'm assuming that's a good sign.

 

Anyway, I guess my question is - based on everything I've said (and I know it's a lot - although if you need more information, please let me know) does it sound like it could be a gluten intolerance?  The only reason why I'm skeptical is because I literally had a sandwich every day for lunch, toast or a bagel or oatmeal every morning for breakfast and my supper almost always included some sort of wheat, so why was I not experiencing pain and diarrhea every day?  I'm having no problem with the transition to gluten free food. I told the doctor I'd give up anything, I so badly want an answer. A lot of people say to me, if it's only happening once every couple months, what's the big deal? It is a HUGE deal to me. I'm scared to do anything, it just seems so random.

 

Thanks so much to those of you who read this - I appreciate it more than you know and thanks in advance for any and all help.

[ldm789]

Did I post this in the wrong topic? I see lots of other questions getting replied to - maybe my question was just too long, or maybe there really is no hope for me.

[Celiac Mindwarp]

Hi idm

This forum is fine. I think you probably just hit a quiet spot oe the board.

Welcome

From your symptoms and improvement gluten-free, it certainly possible you have a sensitivity or intolerance.

It depends how important a diagnosis is to you. If you want to try and get a celiac diagnosis, you would have to eat gluten again for a few weeks, and get blood tests. If you don't want or need this, you could take a look at the newbie 101 thread in the coping with section, and check out how to make sure you are fully gluten-free. A little gluten can make a huge difference.

Do stick around and ask questions, and read around, there are plenty of folks who can help out.

Good luck

[klisja]

Did I post this in the wrong topic? I see lots of other questions getting replied to - maybe my question was just too long, or maybe there really is no hope for me.

 

Keep a food diary I don't get digestive issues from white wheat or spelt (just really tired and brain fog) but I get terrible sick from whole wheat products, rye and barley.

[1desperateladysaved]

Hi everyone,

 

I'm new to this board, and to the gluten free lifestyle as well.  I really hope someone can help me with this, I'm very confused and in need of some sort of an answer.  Any feedback is much appreciated.  Just a (hopefully) quick summary of what got me to this point.

 

Up until about four years ago, I could eat whatever I wanted (I'm 27, 5'6", 115lbs, otherwise healthy). Then it seemed, and it took me awhile to catch onto the fact that it was a problem, I started experiencing extreme stomach pain which after several minutes would turn into me having diarrhea, which would alleviate the pain and after that (for the most part), I would go back to feeling completely fine.  After I starting taking notice I realized it would happen, on average, every one or two months with the longest time between it happening being about 3 months.  I did my own research and stumbled across an IBS website which led me to cutting many things out of my diet, eating mainly chicken, bagels, bread, cereals, rice etc. I stopped eating red meat, fast food, anything deep fried, high in fat and basically anything questionable. This seemed to help slightly with the pain, but the randomness of the stomach bloating, feeling a gurgle and having to run to the bathroom was still occuring, once again on average every month and a half to two and a half months.  I had bloodwork done at which point I thought the doctor had tested me for celiac (this was back in 2011) but when I called his secretary to confirm, she said it didn't look like he had.  I eventually went to see a holistic nutritionist who put me on probiotics after we realized I had been on antibiotics for several years prior to try and clear up my acne.  She also put me on a digestive enzyme to take.  This seemed to help a bit but I became more and more paranoid about food and scared to go anywhere for fear that my stomach would randomly hurt and I'd have to run to the bathroom and not make it.  So basically my diet for the past two or three years has been primarily bagels, sandwiches, chicken burgers & fries (the kind you can bake in the oven), pizzas (I would buy just the crust and make my own and put on only cheese and veggies), pasta, potatoes and veggies.  Since I've still been experiencing the same symptoms I went into the local health food store and started telling the lady there my problem and she suggested I see a naturopathic doctor, which I did.  We sat for two hours and I told her my entire history about never having problems before, how four years ago it started, during a stressful time in my life (graduating university, breaking up with my first serious boyfriend, running out of money, work problems).  Not even five minutes into our consultation she told me she believes I have a gluten intolerance and I've been on a gluten free diet for three weeks now.  It's hard for me to know if it's working or not where my only real symptom (that disrupted my life anyway) is the pain and diarrhea and that only happens every couple months.  I do feel like I have more energy and I definitely feel much happier (although that may just be because I'm hopeful that this is finally the solution) and my bowel movements are certainly a lot more frequent (in a good way) and a lot less hard and piecey, so I'm assuming that's a good sign.

 

Anyway, I guess my question is - based on everything I've said (and I know it's a lot - although if you need more information, please let me know) does it sound like it could be a gluten intolerance?  The only reason why I'm skeptical is because I literally had a sandwich every day for lunch, toast or a bagel or oatmeal every morning for breakfast and my supper almost always included some sort of wheat, so why was I not experiencing pain and diarrhea every day?  I'm having no problem with the transition to gluten free food. I told the doctor I'd give up anything, I so badly want an answer. A lot of people say to me, if it's only happening once every couple months, what's the big deal? It is a HUGE deal to me. I'm scared to do anything, it just seems so random.

 

Thanks so much to those of you who read this - I appreciate it more than you know and thanks in advance for any and all help.

" I told the doctor I'd give up anything, I so badly want an answer."  Yeah, I know what you mean!  I use to hold on to my bread eating with an iron hand.  Eventually, I realized that I would rather not eat it, if it could help.

 

I don't know why symptoms seem to come and go seemingly at whim.  I know they do, though.  I know how inconvenient it can be.  Many of us have turned to alternative practitioners when MD's failed us.  I am so glad for the help I have received.

 

 I hope this is your answer.  Keep up the good work, expect some bumps and hairpin curves, and get well. 

 

Diana

[ldm789]

Thanks so much for your helpful replies, everyone. 

[PdEnt]

Keep a food diary I don't get digestive issues from white wheat or spelt (just really tired and brain fog) but I get terrible sick from whole wheat products, rye and barley.

but I get terrible sick from whole wheat products, rye and barley ... The last sentence has almost made me cry. Since 2010 I have been intermittently "plagued" by LLQ pain that I cannot pinpoint. Doctor did order a blood test but I was gluten free for 3 months already and he offered no information, obviously that came up negative. An endoscopy also came up empty other than releasing scar tissue a bit. 

 

Now, for the past 3 weeks the pain has come back and seems to be getting worst. It wakes me and I am nauseated, especially in the morning. When I get up it almost feels like I've used a cheese grater in my far left abdomen and I'm stretching it out...? Dairy is not the best, the fattier the worst. BARLEY is horrible horrible but the doctor completely dismissed that I would react different to different gluten sources. I can hear indigestion noises, mostly on the left sign, like little popping gurgling that is non-stop... and I am just sooooo tired.

 

All in all I'm not even sure what to do next. I own a business and have to work. The "brain fog" is an apt name and again dismissed by pretty much everyone in this rural area... R U R A L ... with limited care choices. Anyway, it's just comforting to read some of your posts

[cyclinglady]

I am formally diagnosed, but my husband is not. He went gluten-free at the advice of two MDs 13 years ago. He refuses to get tested for celiac disease. Why bother at this point? He knows that gluten makes him sick (cranky, sinus congestion or infections, body aches).

Are you sure that gluten is completely out of your diet (including hand lotions, lipstick, crumbs from gluten eaters)? Eliminate milk products too for a while unless you have an allergy and you never "out grow it".

Keep a journal too. I can not have gluten-free oats or quinoa yet and I have been allergic to milk, eggs, nuts ,etc. which runs in my family and was identified decades ago. Keep a food journal and stick to whole foods for a while. You can get better!

[PdEnt]

I am formally diagnosed, but my husband is not. He went gluten-free at the advice of two MDs 13 years ago. He refuses to get tested for celiac disease. Why bother at this point? He knows that gluten makes him sick (cranky, sinus congestion or infections, body aches).

Are you sure that gluten is completely out of your diet (including hand lotions, lipstick, crumbs from gluten eaters)? Eliminate milk products too for a while unless you have an allergy and you never "out grow it".

Keep a journal too. I can not have gluten-free oats or quinoa yet and I have been allergic to milk, eggs, nuts ,etc. which runs in my family and was identified decades ago. Keep a food journal and stick to whole foods for a while. You can get better!

I was unclear. When I had the blood test and endoscopy I had been gluten & lactose free for 3-4 months. For the past year and a bit I have been eating gluten, until a while ago, when I slowed down with it due to this flare up. To be honest, my family doctor and the gastro-dr were so dismissive about it being gluten or lactose, or anything other than intermittent IBS and c-section scarring that I figured I would just have to life with the slight gnawing for the rest of my life. It really had never gone away totally. Now it's just back as it once was in 2010

 

For a background. I had a baby in 2002 with issues and I went gluten/dairy(lactose/casein)/red meat free for about 18 months in order to feed her. Since then my digestive system has been a bit temperamental with a few things. I think some issues have crept up over the years and I now need to get a handle on them because all aspects of my life are being dragged in.

[notme]

ibs is doctorspeak for:  i don't know what's wrong with you - your tummy hurts.  for 25 years, i heard:  you have ibs, sorry.  what exactly does that mean?????   irritable bowel syndrome....................  <it's not even a real thing. 

 

if you weren't eating gluten when you were tested, chances are your test would be negative.  they are testing for antibodies, little fighter cells of gluten.  so, if they aren't fightng gluten, they wouldn't show up on test.

 

celiac is genetic, but will be 'triggered' - pregnancy/childbirth = very common trigger.  good luck to you

[cyclinglady]

It looks like you have two choices:  1) get retested for celiac disease after going on a gluten challenge for two months (so hard to do!) or 2) go gluten free and try to identify other food intolerances with a food journal.    It  appears that you know that gluten gives you issues, so you might be ready to give it up for life.  It took my husband a year to determine that gluten really was an issue (and a chocolate intolerance).  I am sad that our docs back then were not celiac disease savvy as an official diagnosis is handy to have when you are going to school or the hospital or just plain getting support from family and friends.  

 

celiac disease is genetic, so you'll your child may have it or may develop it at some point in his or her life.

 

This forum is a wealth of knowledge.  Please read our newbie forum as gluten is everywhere!

 

I hope you feel better soon!