i dont even know im so frustrated

[izziebelle425]

hey everyon i have celiac sprue nd follow a gluten free diet however, these are symptoms i have been having and im so frustrated i dont know what to do. so this has been going on for 5 years and i have had it. im to a point i literally would rather have my intestines out and use a poop bag then have to live this way.
my stomach is not right i know it is not normal to feel this way. my whole life revolves around my stomach. i have to wake up two hours before work in the morning so that i have time to sit still and let my body poop. seriously. if i dont do that, my body wont poop that day. once i go, i usually have a feeling like i didnt poop enough, so i have to sit a little while longer and wait till i have to go again, then i go. even though i am pooping, im still feeling like im not getting it all out. so then i go to work, still bloated (when i wake up in the morning i feel like absoluite ****, bloated, belly distended, and i feel like ih ave to go poop. but i cant unless i sit and let my body relax. its weird.)
then at work all day i feel really gassy and bloated. i forgot what it feels like to be hungry because i am always so bloated. i can feel stuff moving around inside, if i sit in a different position it will move, its weird. i feel like i have to poop all day long. andi  cant. its like my butthole wont let it come out. i cant explain it. by the time im done with work, im more exhausted from feeling so crappy all day then i am from working. its more comfortable to sit, reclines a little, then to stand or walk. i constantly have this feeling and have had it for 5 years. i dont even know how to explain it to doctors, but i have had numerous tests done.  ihave tried laxatives and the same thing, i can only poop in the morning if i relax enough to, and then i will just feel like i have to for the rest of the day and not be able to. when i go to bed i can feel all the air or **** thats in my stomach move around. its so uncomfortable. i want to be able to just wake up in the morning and go, without having to revolve my whole life around this. no one knows what it is, and i have done everything i can think of. fiber, acidophilis, flax oil, working out, i mean everything. i usually dont feel like doing anything ever because my stomach is so bloated and i feel like pooping so much and its taking my life away. i was thinking maybe i have a lazy colon and i should get some kind of surgery. i have done so many searches onlien and i cant find anything with the symptoms i have. please someone please tell me anything! i will do anything to just be normal and not have my bowels ruin my life anymore.

[CalGal]

Izzie, there are many celiacs who cross-react to casein, the major protein in dairy. Are you one off them? Cross-reactivity can cause a whole host of problems of it's own and some people find that they can go either way - diarrhea or constipation. Have you ever been checked for casein, or tried taking dairy out of your diet?

[Matthew007]

Yeah I'd go on a elimination diet, on top of gluten free...soy was a major problem and i'm still trying to figure my problems out but I think soy/casein/dairy/corn are things to closely look at...hope you feel better!

[WAYTOOTIRED]

Hi Izzie

Lordy,  no wonder my daughter is in the bathroom so long when she goes.  Shes never said anything about it...but,  That must be why.   She hasnt been blood tested for Celiac...but, there is no doubt she has it....noooone.   Along with her symptoms..her father has  ulcerative colitis and her brother,  my son...has Crohns...hes already lost some of his intestines...her dad has had ulcerative colitis since he was 29.  over 30 years.   We didnt know what was wrong...but, my daughter had her first symptom when she was six.  sores on her mouth...it was horrible.  right when that ended...she got what we thought was exzema (eczema) on her feet.  Nothing they used to treat it..helped.  Finally they used a heavy steroid cream on it....shes now 33.  Still suffers with all of this stuff...I just by accident   read about   Celiac..and Gluten intolerance.   I thought I was reading her story.   I'll have to ask her about the " going poop" thing.   all I know, is,  it takes her forever to go.   She has IBS.  Thats a constant nightmare for her.   The only thing that has ever worked for her, for the IBS, is,  ' Dicyclemine"   (sp)  its like a stomach tranquilizer.   It relaxes her intestines.   90% of the time its very affective for her....every now and then...it helps a little  but not completely.   But, most of the time it works.  

If she has the blood work done...she has to pay for it...she doesnt want to commit to gluten free   until she knows...its way more than not eating anything with gluten in it...you have to clean your house completely...and remove any trace of ever having gluten in it...pots, pans, silverware...any flour dust...anywhere...you can't be anywhere where there has been or has gluten around...even a gum rapper has gluten...that white powdery stuff in a gup wrapper is " gluten"   its a big job...a big commitment..so, she wants the blood work first.   I've told her  I will pay for it...but,  I think shes trying to get the courage...to make that life time comitment

[Sportsbuff6922]

My son was diagnosed celiac with potenially crohns. Dr. was never definitive. We struggled for 2 years under medical direction with prescription drugs. We tried these altervative nutritional supplements and it has kept his symptoms under control along with the dietary changes. He drinks Aloe juice, Digestive Enzymes, and an antioxidant called opc3. It has worked wonders. He is medication free and 3 years later his bow movements are normal, blood work fine, and symptom free. If you want information I can send you to the persons website who I got the products from.

[Ginniis]

Your symptoms sound very much like what I have.  I was bloated for .. well .. 40 year or more.  After going gluten free, I am rarely if ever bloated.  If I eat something with gluten, I get the symptoms you describe.  I do not eat out a lot so I find a gluten-free diet fairly easy to follow.  I would characterize my diet as a Mediterranean Diet without gluten.  I have learned to make pizza that is delicious so I can have pizza.  If I want pasta, I use brown rice or corn pasta.  Some of the gluten-free food in the stores might not be 100% gluten free and I find that I react to some baked goods - but the Food For Life breads are safe (usually in the frozen section - except at Trader Joe's).

When I went gluten-free, it took a while to heal - but after 2 months I was feeling much better.  Now, after 2 years, I go weeks symptom free and "pooping" fairly well.  I have just started trying probiotics - and I'm using Align and I think that's helping too.

I use lactaid (costco cheaper version) and that helps with dairy - although I don't drink or eat a lot of "fresh" dairy.  I do not react to any cheese that is aged.

Good luck.  

[jam777]

Hello Izzie,

I have heard of numerous people who have benefited from taking 2 capfuls of OPC-3 and 2 oz. of UltimateAloe to help with their Celiac decease.

Here are the links where you can purchase those two products.

http://www.marketamerica.com/marius/topproducts-13009/isotonix-opc3.htm

http://www.marketamerica.com/marius/topproducts-1282/ultimate-aloe-juice.htm

Best of luck

[venustiana]

you could have more than celiac. I have celiac and gerd. Check this website  greattastenopain.com by Sherry Brescia. Is good info. I'm taking her product.

[yatahey]

My wife had a food allergy panel recommended by her naturepath. She is also gluten sensitive. The test showed 38 food allergies!!. She is now on a 4 day rotation diet using a list of foods that she didn't react to in the test. She no longer suffers from the gas etc. Interestingly her thyroid numbers are also near normal after having been elevated. So she is essentially removing food-born atagonists with great results!