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

Feeling Lousy And Frustrated


Roda

Recommended Posts

Roda Rising Star

Well I'm here to report that the creon is helping significantly. I accidently tested that theory(missed two doses in one day) and was completely miserable. I also have discovered that I can not tolerate sesame now. I also believe alot of processed products are affecting me. Since eating "South Beach" I have felt pretty good. The more I make fresh, the better I feel. Tonight I'm miserable with heartburn from the beef stew I made and overeating, but I don't think it is a gluten issue since hubby has it too. :P


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

That's good to hear you are doing better Roda. I do much better without many processed foods also.

  • 1 month later...
Roda Rising Star

Well a little weird development. I've been taking the creon since the end of Aug. with pretty goods results. It kept me from having D and there was no noticible fat. Well We went to my inlaws last weekend. I took and prepared my own food so I know it was safe. Friday before we got there I felt a little bloated like I needed to use the restoom but couldn't. Symptoms worsened over Sat. and by Sunday I was so distended and my belly was hard. I was constipated beyond belief. It was almost like I had been CC'd or ate something I shouldn't have but I knew that wasn't the case. I got to thinking about the creon and constipation being a problem. It seems it is more of an issue at much higher doses than I was taking (taking creon 12000 one capsule three times a day with meals). I started to believe that the creon was the culprit so I didn't take anymore after lunch on Sunday. I would have gotten something for the C on Sun but I didn't want to be up all night and we had a 4 1/2 hour drive on Mon. morning back home. I did have some small movements but nothing significant. I even ate tons of greasy stuff on Monday and it didn't phase me. I had to work Tues. morn so I didn't want to take anything until that eve. I took two laxitive tablets and finaly by Wed. morning it did the trick. I have treated my belly gingerly since then and I have not had any D despite not taking the creon. I'm wondering if whatever malabsorption I had going on is starting to correct itself and I don't need as much creon or need it at all now. It's been very interesting to say the least.

Roda Rising Star

Going on two weeks without the creon and I have not had any major issues. I'm hoping the elimination of alot of gluten free mainstream products and even gluten free products is doing the trick. I did that around the same time as I started the creon. I'm cautiously optimistic! :)

GFinDC Veteran

Sounds good Roda! A simple diet works best for me. Happy Thanksgiving or day after anyway:-)

Roda Rising Star

Sounds good Roda! A simple diet works best for me. Happy Thanksgiving or day after anyway:-)

Thanks!!! I still think I have minor gallbladder dysfunction, but for now that is managable! Now on to focusing on my son who I started on the diet a week ago and I think the oldest son is on borrowed time until he can get his blood work. Happy holiday's to you too!

dws Contributor

Sorry about your diffuculties. I have my doubts about acid inhibitors. I was doing great eating gluten free. The diarrhea I had for most of my life vanished. Subsequently, I had some gerd problems and took Prilosec and then Nexium for several months. I started having trouble with diarrhea again which continued even after stopping the acid inhibitors. Doctors didn't even want to consider the inhibitors as the culprit. Seems to me that if you inhibit acid production, especially over a long period of time, the ph of your digestive tract might be effected. Acidity is one of your body's defenses that keep the "bad guy" bacteria in check in your digestive tract. Maybe the acid inhibitor has your system out of whack. I'm still struggling ever since taking them. Just a coincidence as my doctors insist? Sometimes I wonder. Feel better soon.

I've been having some GI issues since Jan. Heartburn, bloating, belching, epigastric pain and diarrhea. I had a gallbladder ultrasound and Hida scan because I thought my gallbladder was giving me trouble. Had normal ultrasound and "technically" normal hida. Threshold for surgical intervention is an ejection fraction of 35% and mine was at 48%, not optimal(according to report) but "normal". I gave in and had an EGD on April 6th. I was diagnosed with distal esophagatis and a stomach ulcer. Small bowel biopsy was normal with NO villi blunting :) and biopsy negative for h pylori, so at least some good news. I have been taking prescription zantac since then with relief in the stomach pain and heartburn. My symptoms of bloating and diarrhea have gotten worse! :angry: I eliminated dairy on the 7th thinking that would make a difference. I feel no better if not worse. When my body has had enought it does a major purging. I had some quacamole last weekend (I made it and it was safe) and hours later I was bloated out like I was 10 months pregnant. I had other stuff to eat that day, so I think the quac was the last thing my body could tolerate. The next morning all h*** broke loose. I'm miserable again tonight with the same thing except now I am hardly able to make it to the bathroom in time. I don't think it is the zantac because I have eaten very bland, mostly just rice, and be somewhat normal. I plan on putting a call into the GI tomorrow. I thought with the diagnosis of the ulcer I would get to feeling better and move on. NOPE! I'm tired of all this and very discouraged. I'm trying to decide if consulting with a surgeon about the gallbaldder is something I should persue. Something is wrong and I still think the gallbladder could be it. Maybe I'm just going nuts, I don't know anymore. I felt bad before the celiac diagnosis, but it was just the heartburn and fatigue from anemia and low vitamin D. I never had a problem with diarrhea, quite the opposite in fact. This constant running to the bathroom and fear of going someplace without a bathroom is taking its toll.


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Sorry about your diffuculties. I have my doubts about acid inhibitors. I was doing great eating gluten free. The diarrhea I had for most of my life vanished. Subsequently, I had some gerd problems and took Prilosec and then Nexium for several months. I started having trouble with diarrhea again which continued even after stopping the acid inhibitors. Doctors didn't even want to consider the inhibitors as the culprit. Seems to me that if you inhibit acid production, especially over a long period of time, the ph of your digestive tract might be effected. Acidity is one of your body's defenses that keep the "bad guy" bacteria in check in your digestive tract. Maybe the acid inhibitor has your system out of whack. I'm still struggling ever since taking them. Just a coincidence as my doctors insist? Sometimes I wonder. Feel better soon.

I never was on any acid inhibitors until after I had my repeat EGD that showed the ulcer. I had been having problems since Jan. The doctor wanted me to take the zantac for 6 months but I quit taking it after about 2-3 months. I haven't had the need for any since. He wan't to happy with me for stopping it. I know the ulcer has healed since the stomach pain and reflux is gone. I still don't overdo it and am careful. I think in part alot of my trouble was low levels of gluten in mainstream products and gluten free products. I am now at a point that things are looking up and I see a light at the end of the tunel. I am still going to have to watch my fat intake, since I still believe I have a dysfunctional gallbladder. I think in time I will have to have it removed, but for now it is manageble. I'm going to in a few months see about getting my blood work done to see if my gliadin IgG antibody has gone down. All my other ones were negative...I'd like to know if getting so strict has helped. I think it is. Good luck to figuring things out.

  • 3 months later...
deezer Apprentice

I no longer have a gallbladder but since it's removal I developed gastritis because bile is backing up into my stomach from the small intestine. That is a definate cause of gastritis and ulcers for some people! They gave me a medicine called carafate and it worked wonders!

Did you have constipation with that by chance?

Lucydesi Rookie

Fully agree with what people have said. Hope you feel better. I diagnosed myself with Celiac disease (which doctors just love :rolleyes:)because none of the local doctors where I live even considered it. I had to keep pushing to get referred to great GI specialist who believed me and diagnosed me. I think ER docs for the most part are great, but really want to patch you up and get you out - sad state of affairs because of no health insurance.

Hope you are getting more answers.

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. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      12

      Diagnosed Marsh stage 3C in January 2026

    2. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      12

      Diagnosed Marsh stage 3C in January 2026

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      35

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      12

      Diagnosed Marsh stage 3C in January 2026

    5. - Kimmy88 commented on Scott Adams's article in Product Labeling Regulations
      3

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

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

    • Total Members
      133,424
    • Most Online (within 30 mins)
      7,748

    Mobile App Developer
    Newest Member
    Mobile App Developer
    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

    • Known1
      Thanks, at that price it was a complete no brainer.  I also went through the reviews and a number of folks with our ailment gave it 5-stars.  It won't be here until the end of the month, which may give me enough time to finish the books I have. Also, in an effort to play it safe and see if I start feeling better again...I tossed out my remaining bananas and will keep them out of my diet for the next 6-months.  😀 Thank you for sharing your experiences and making recommendations to a noob like me.
    • knitty kitty
      Yes, that's the one I was referring to!  Good for you, being proactive!
    • Wheatwacked
      link works but you may have enhanced security blocking it.  In Edge you have to click on continue to site when the security warning opens.  Other browsers or antivirus may just block it because it is not https.
    • Known1
      It looks like she has a couple of books that share "The Paleo Approach" in the title.  I ordered this one, as the other is a cookbook. The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body Thanks again for the info.
    • knitty kitty
      @Known1,  I understand you have had your B12, Folate B 9, and Vitamin D level checked.  However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently.  Results can take a long time to get back, delaying proper treatment and risking permanent damage.  It's easiest to supplement and look for health improvement. Blood tests can reflect how much of a certain vitamin was consumed in the past twenty-four to forty-eight hours.  Vitamins released by digestion is absorbed by villi, anemone like projections that increase the surface area of the small intestine, and then pass into the blood stream for distribution around the body.  A Marsh score of 3C indicates severe damage to the villi lining the small intestine.  Absorption of nutrients is definitely affected.   Blood tests don't reflect the amount of a vitamin  that is stored inside cells before being used.  You can have "normal" blood levels but have deficiency within cells of organs and tissues.  Tissues and organs will relinquish their stored vitamins into the blood stream in order to keep the brain and heart working while tissues and organs are depleted.   It's possible to have a localized deficiency of Thiamine B1 in different organs which cause the organ to malfunction.  Gastrointestinal Beriberi is caused by Thiamine deficiency in the gastrointestinal tract.  Gallbladder dysfunction, thyroid dysfunction, heart attack, and cognitive dysfunction can be caused by Thiamine deficiency.   Most of the B vitamins cannot be stored for very long, maybe six weeks. B12 can be stored for as long as a year in the liver.  So having "normal" B 12 levels does not mean all your other vitamins are "normal" as well.   Thiamine can be stored for eighteen days, however  Thiamine can be depleted within three days.  We have a greater metabolic demand for Thiamine when we're physically ill, emotionally stressed or are physically active (work out regularly) or work outdoors (or ride bikes).  Because most B vitamins can become low within a month or two under the best of circumstances, many newly diagnosed feel great on the gluten free diet at first.  After that, they seem to start going downhill.   The nutritional deficits start making themselves known.   Keep in mind that processed gluten free foods are not enriched nor fortified with vitamins and minerals to replace nutrients lost in processing like their gluten containing counterparts are.  You have to replace them yourself by taking supplements at least until the villi regrow and absorption improves. The eight B vitamins are water soluble.  They are easily lost if one has diarrhea or constipation or in those with a high Marsh score.  Because they are water soluble, the body can easily excrete excess through the kidneys.  Recommended Daily Amounts are based on experiments done on humans to find the minimum dose required to prevent disease.  Levels for optimal health are much higher.   Doctors are trained in medical learning institutions which are funded by pharmaceutical companies.  Requirements for nutritional education have been reduced to twenty class hours over the course of the seven years of medical school.   Three-day weekend seminars earn ten hours.  Vitamins cannot be patented as they are natural substances, so there is more profit for doctors to prescribe pharmaceuticals.  They are taught to cover symptoms with pharmaceutical bandaids.  They may not look for what caused symptoms to appear in the first place.   Doctors are taught nutritional deficiencies don't occur except in impoverished or drought stricken countries.  This is not accurate.  Nutritional deficiencies can occur if you eat a High Carbohydrate Diet, eat the Standard American Diet, and if you have malabsorption problems as occur with Celiac Disease.   You can check out my blog for the challenges I faced due to vitamin deficiencies that went unrecognized by doctors.   Talk to your doctor and new dietician about supplementing with vitamins, minerals and essential nutrients while your villi are healing.  My favorite Celiac book is The Paleo Approach by Dr. Sarah Ballantyne.  She explains the AutoImmune Protocol Diet.  It has been shown to reduce inflammation and promote healing in the gastrointestinal tract. Best wishes!
×
×
  • 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.