Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Symptoms Improved But Haven't Gone Away.


jimhalpert625

Recommended Posts

jimhalpert625 Newbie

Hi guys,

 

So here's my situation: my entire life I'd have about one "episode" of severe abdominal pain and diarrhea per month or so. Then, beginning spring (6 months ago), I began to have an average of two per week. They were very painful and felt like someone was inserting a balloon into my intestine and blowing it up. The pain was right at my belt line in the center of my stomach and was followed by diarrhea. My dad has this exact same thing, and his symptoms improved when he stopped gluten, so I did the same thing. Now, I'm on a gluten free and mostly dairy free diet. My symptoms have improved in the sense that I'm back to about one bout of abdominal pain and diarrhea per month, however I'm still having issues. I still frequently have discomfort and gas, and I don't know what's causing them. I know I have problems with dairy, but the thing is I've accidentally ingested gluten numerous times and haven't had any problems. Then  other times I would have a serious stomach episode when I'd know for sure I haven't had any gluten. So, what else can I do? What else can be causing this?

 

This is what I ate in the 24 hours leading up to my latest stomach attack in order from soonest to latest:

 

This morning (morning of attack):

 

Breakfast:

Glutino bagel, peanut butter, Jelly

 

(yesterday):

 

Snack:
Glutino bagel, 3 slices of ham, mayo before bed
 

Banana
Udi's Gluten Free granola

 

Dinner:

Chicken and brown rice

 

Snack
Immune support emergen-c vitamin supplement

 

 

Lunch:

Gluten Free pasta and Prego sauce

3 beef franks

Banana

 

Breakfast:
Glutino bagel with pb and jelly
Coffee

 

Everything in bold on this list I know for sure I've eaten before and not had any stomach problems. Does anyone have any insight on this? Psychological factors are not an issue at this point, I'm convinced it's something I'm eating. How can I pinpoint what's causing this when there are no obvious culprits?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

Not much fiber. Those bagels have a lot of ingredients that can cause you issues - like guar gum.  Maybe eat some more fruits and veggies, nuts, etc and not eat the processed gluten-free stuff for a few weeks?  See if that helps?

HumanDecency Contributor

karen is right. When I first went gluten free I went out and bought all kinds of gluten free products and my symptoms didn't subside. However as I started eating more natural food things started to get a little better. It still took a little while to heal and I'm not completely 100 percent but I definitely feel a lot better. It's really hard to track down what's wrong with your diet without starting from scratch and slowly adding stuff in.

jimhalpert625 Newbie

karen is right. When I first went gluten free I went out and bought all kinds of gluten free products and my symptoms didn't subside. However as I started eating more natural food things started to get a little better. It still took a little while to heal and I'm not completely 100 percent but I definitely feel a lot better. It's really hard to track down what's wrong with your diet without starting from scratch and slowly adding stuff in.

 

I've been eating both Glutino Bagels and Udi's Granola for the better part of a month without any issues though. Udi's bagels definitely upset my stomach, but I'm pretty sure glutino is safe.

kareng Grand Master

I've been eating both Glutino Bagels and Udi's Granola for the better part of a month without any issues though. Udi's bagels definitely upset my stomach, but I'm pretty sure glutino is safe.

I Thought you just said you WERE having issues while eating these things?

Anyway....my advice to eat a more rounded diet with some fiber still stands.

Salax Contributor

I agree with Karen. Go with natural food for a while and see how you feel.

IrishHeart Veteran

Have to agree with Karen here.

 

I don't see any green leafy veggies or fruit or substantial dietary fiber in your list.

 

White rice flour bagels--not the best thing. It's devoid of whole grains and empty calories (like regular bagels)

 

A whole foods diet is best to start getting your GI tract straightened out: meats, fish, poultry, veggies, fruits, nuts, seeds, coconut milk

and health fats: avocado, olive oil, coconut oil..

 

Stomach problems (acid, pain) are different from intestine problems (bloating, gas) and the

reason for gas and bloating is often

not enough dietary fiber to "move things along".

 

Drink water, alter your diet, take probiotics. IMHO 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CajunChic Explorer

I agree with more natural foods. I'm 3 months gluten-free and feel my best when eating really clean. Processed food in excess always make me sick, gluten-free or not. Spend a good week of eating clean, then maybe add a processed carb once you're feeling better. You may find some gluten-free brands don't always agree with you. Hope you feel better soon!

w8in4dave Community Regular

I get really bad pains at times waking me up in the middle of the night! It is just gas. I do Like up above :) Eat stuff on the outter perimeter of the store. Fresh meat fresh veggies , theres so much fresh stuff out right now!! You can take advantage of it! Don't limit your self to a bagel ... 

ItchyAbby Enthusiast

I am going to echo what has been said here a bit, but for emphasis: Start including WAY more vegetables in your diet, especially green leafies. Your current diet is lacking quality, nutrient-dense whole foods. And all those gluten free breads have things like xanthan gum in them, which some people have a really hard time digesting. (If you want to read someone else experience with gums, this is a great blog post - she talks about giving up gums part way down, after finding that they really were not agreeing with her: Open Original Shared Link )

dilettantesteph Collaborator

You stated that you have accidentally ingested gluten many times and didn't have any problems.  That would make it seem that gluten is not your issue.  Have you gone to the doctor about this?  That is what I would recommend.

w8in4dave Community Regular

If your accidently eating Gluten and saying your not having problems , but you are having problems. So are you sure it is not Gluten?

nvsmom Community Regular

Problems can linger for a long time.  It took me almost a year before I saw improvement in most areas.  Maybe it will eventually fade after you've been completely gluten-free longer.

 

Ditto the others on the starchy carb content on your diet. You might want to play around with more protein, fats and add more veggies.

 

Good luck!

jimhalpert625 Newbie

If your accidently eating Gluten and saying your not having problems , but you are having problems. So are you sure it is not Gluten?

 

Nope, I'm not sure. I tested negative for celiac in a blood test, but after cutting gluten and eating better overall my symptoms have been reduced. From ages 0-20 I had about one episode of severe lower abdominal pain coupled with diarrhea, nausea, sweating, malaise, and fatigue per month. Beginning 6 months ago, I began to have four. My symptoms quadrupled and I couldn't figure out way. No changes in diet or stress. After awhile I got so sick of it that I went on a gluten free, mostly dairy free diet coupled with high doses of probiotics and acupuncture. After that, it dropped back down to one per month, and now I'm here. That being said, I've accidentally ingested gluten 5 or so times since I've been gluten free with no ill effects. My dad has the same thing I do and so do multiple members on my Dad's side of the family. All have reported symptom reduction after cutting gluten. After my aunt went to the doctor for the same thing, they needlessly removed her gallbladder, so I'm not keen on seeing anymore doctors. I've talked to my primary care physician about it once and he just said "it's probably IBS", did a few blood/urine tests which came back negative, and sent me on my way.

kareng Grand Master

Nope, I'm not sure. I tested negative for celiac in a urine sample, but after cutting gluten and eating better overall my symptoms have been reduced. I used to have about 4 serious episodes of severe intestinal pain followed by diarrhea, nausea, sweating, malaise, and fatigue, now I'm having about one per month. That being said, I've accidentally ingested gluten 5 or so times since I've been gluten free with no ill effects. My dad has the same thing I do and so do multiple members on my Dad's side of the family. All have reported symptom reduction after cutting gluten. After my aunt went to the doctor for the same thing, they needlessly removed her gallbladder, so I'm not keen on seeing anymore doctors. I've talked to my primary care physician about it once and he just said "it's probably IBS", did a few blood/urine tests which came back negative, and sent me on my way.

A urine sample? celiac isn't tested by urine sample. Glucose might be tested that way? It is when you are pregnant. But not celiac.

jimhalpert625 Newbie

A urine sample? celiac isn't tested by urine sample. Glucose might be tested that way? It is when you are pregnant. But not celiac.

 

Sorry, I meant blood test. I've revised my post. 

GFinDC Veteran

Hi Jim,

 

Here's some ideas that might help you.

 

Celiac disease is an auto-immune condition.  The immune system reacts for weeks to months at a time.  So eating gluten twice a month means the immune reaction never stops.  It only takes a small amount of gluten to trigger a reaction.  So you need to be careful of cross-contamination.  Sticking to whole foods for a few months may help.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

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/

Pegleg84 Collaborator

If you do have problems with gluten (and it sounds like you could be, if you're feeling better without), then every time you eat it (accidentally or not), you might not feel it right away but it's still messing up your system, making it difficult to digest everything else. Also, if you're still healing your gut might not be able to handle everything you put in it, even the safe stuff.

 

That said, definitely cut back on the processed gluten-free stuff (bagels, etc) and eat more fresh veg, meat, safe grains, etc. That's just healthier in general, and will help with healing. Probiotics and digestive enzymes might also help.

 

Regardless of whether you might have Celiac or not, if you're going to be gluten free, then you have to treat yourself as though you have it. Stick to it, and hopefully you'll feel better. If you don't, then something else could be wrong.

 

Hope this helps. Good luck!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.