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Feeling Lousy And Frustrated

Roda

By Roda
in Coping with Celiac Disease

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Roda Rising Star
Roda
Posted
  • Author

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

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GFinDC Veteran
GFinDC
Posted

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
Roda
Posted
  • Author

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
Roda
Posted
  • Author

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
GFinDC
Posted

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

Roda Rising Star
Roda
Posted
  • Author

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
dws
Posted

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.

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Roda Rising Star
Roda
Posted
  • Author

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
deezer
Posted

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
Lucydesi
Posted

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.

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      Test interpretations

      By Scott Adams · Posted

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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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