Still In Pain Please Read My Story :(

[girlinpain]

Hi, I am new here. I am 28 years old nad have suffered with severe abdominal cramps with diareah/bloating/gas/nausea since I was around 13 years old. At 15 they found 8 large gallstones in my gall bladder nad it was removed. I thought that was the end of my problems but the pain continued. I tried for years to get help and before the gallstone operation tried every ant -acid (dirnking 2 bottles of mallox a day with tagament and zantac then at the time THE new drug) and nothing has helped.

Usually it would go like this.. nauseas when i wake to the day i go to sleep regardless if I ate or not. I would make sure not to eat at school or at friends or on dates. I would only eat at home have my sweating brain numbing stomach spasms and release the food from my body immediately. I am also overweight with hashimoto's disease (hypothyroidism) so I guess they dont think of soemone if they are fat as not digesting anything they eat. :/

This summer it got so bad .. The pain moved higher to my stomach where it feels like i have a whole burning through my chest and my heart muscle was even inflamed (i went tot he er with severe Fibro and heart pain but I was blown off). My stomach started cramping 24/7 i couldnt sit of stand i couldn't move. It was pure hell i was in chronic spasms all day running to the bathroom 20-40 times a day. I don't see how a human could GO that much when I was too scared to hardly eat! I also have a bladder disease called IC (intersticial Cystitis). It seems every part of me in inflamed from internal organs to joints to thyroid I finally said forget my MD nad called a gastro who game me citrucell pills and prevacid.

The citrucell did NOT make me regular and despite its no extra gas! made me bloated and made my bladder more inflamed (i cant eat ciitrus). You see if i wasn't having diareah .. which was rare I was constipated which was even more painful as my intetines were trying desperately to get out the offending matter of food Prevacid did nothing for my pain but had no side effects (im very senstive so its pretty ncie to find something without side effects) and was helping my bladder. My insurance wouldnt cover it and now i am curently on prilosec which i feel is crap.

During these times i would try one thing like enzymes and that worked for a few weeks and then completely stopped helping. Then i tried peppermint and that helped then stopped.

My dr suggested he stick a tube harmlessly down my throat and looka round. I asked if he could do any alergy tests first and he said no they didn't dot hat kind of stuff.. which sounded like bs. So i put off the "procedure" as i am sick of surgeries and procedures from my bladder and do NOT do well with anesthia and sure as heck dont want any stupid twilight drugs! my whole fmaily has had that done and every one of them remembers the horrendousness of it so dont tell me any differently.

So I saw endolab.com and maxed out my credit card doing tests on my own dispite my VERY VERY time paycheck from disability (I am inable to work from all that i suffer). They results came back as gluten milk intollerant and dna to celiac and malnutrition.

I have been gluten and milk free (and acidic and chocolate free and limit my sugar or try to as it hurts my bladder). I havent told my dr yet.. i keep pushing back the procedure/surgery date. (along with a nother test showing positive for hypothyroidism and hashimotos)

I admit i felt a lot better... i found canola oil and ALL oil affects me with painful diareah and spasms too.. is that normal (I had switched to olive oil thinking it was better than the laxative affect of canola oil)

BUT i am starting to hurt again.. that burning hole like in the middle near where my ribs end i guess.... and the HORRIBLE stomach spasms near my belly button that make me pray to god for my life to end. The pain is so horrendous.. ive tried the drug.. i forget the name but its for IBS to stop stomach spasms but a half made me dizzy and super sick and i couldnt get up to go to the bathroom if my life depended on it. I am also back to being nauseas. Im sick of having to hide in my house and ppl thinking I am pregnant .. i dont eat that much prob normal now and i dont lose weight. It's also possible I ahve pcos.

Today I am having mashed potatoes (not from a box) and a gravey i made with hamburger and onions and rice milk and corn starch. usually i have a mscdonalds salad (with grilled chicken and bacon) made without cheese and use salad dressing from home (kraft catalina) so theres no milk.

I hurt so bad.... is there anything i am doing wrong? Do I have cancer? I am so scared I ahve to live like this.. shouldnt the prilosec be helping my stomach not have that burning hole feeling. I dont have like acid reflux or anything or if i do it doesnt bother me. I am terrified to stick ANYTHING in my mouth. I tried cornpops as i read it was the best cereal for gluten free and MAN it made me cramp up why???

please anyone can you help me.. i do NOT want to do this procedure its just gonna look for celiac anyway which i most assuredly have.. im so poor yet ive been buying rice pasta gluten free everything and they dont even take food stamps at the health food store.

I need insight BADLY.. do i have cancer??? something else????? please help me i cannot take this pain any longer!!!!!!! looking for real advice not go see your dr bs ive been there done that... i dontcare if your not a dr and dont want to be legally responsible i want real ideas im desperate here i dontwanna die but ...

[Guest jhmom]

I am so sorry you are in so much pain, hang in there and know you are NOT alone in this!

First of all if you go back to the doc he will want to most likely do an Endoscopy, which is where he will stick a tube down your throat and look at your stomach and small intestines to see if your villa are damaged and you MUST be on gluten for this test to come back accurate. Since you have already been tested through Enterolab and been dx with gluten sensitivity then you should remain on the gluten-free diet for life. Gluten sensitivity and Celiac are treated the same way, a strict adherence to a gluten-free diet, if it were me I would not go for the additional testing.

I understand all too well how you are feeling. I went gluten-free in Sept 03 after being dx through Enterolab and still having trouble with pain, diarrhea, etc. I am 100% positive that I am gluten-free and have not had any slip ups and have not cheated at all, I am too afraid of the symptoms.

I went back to my GI doc in Feb because of GI probs and EXTREME fatigue, he took me serious and began checking me for other things (Lupus is particular). I would not fear the worst right now (cancer) you should make another appt with your GI doc and let him know that you are gluten-free, tell him if you have improved the least little bit on the diet and tell him of the other problems you continue to have. I suggest making a list and taking it with you to the appt, makes it easier to remember and he may want to keep a copy for your file.

Please keep us updated and let us know how you are getting on.... take care of yourself!

[gf4life]

Dear girlinpain,

My opinion is that you should go ahead with the Endoscopic procedure (it isn't usually that bad, a colonoscopy is worse!) and make sure the doctor takes biopsies. If you showed malabsorbtion in the Enterolab tests, then you will probably still show damage in your intestines. An offical diagnosis is usually good to have. Especially since you would need to verify that the medications prescribed for you are gluten free (many are not) and your doctor would need to learn more about the disease to know what other problems to look for, since you have a higher chance of developing other auto-immune diseases. As well as, many of the medications may not even be needed.

And Kelloggs Corn Pops are NOT gluten free. They started adding Wheat Starch to them this last January. In fact almost all of the brand name cereals sold at regular grocery stores contain gluten. Quaker Cream of Rice hot cereal and Puffed Rice, Post Fruity Pebbles and Coco Pebbles and Malt-O-Meal Fruity Dino-Bites & Coco-Dino Bites are the only ones I know of. Malt-O-Meal also makes a Corn Pops variation called Corn Bursts and a Puffed Rice cereal, but I've never found them. And anytime you buy cereal that is made in the same factory as gluten cereals you risk cross-contamination.

There is so much to learn when you start this lifestyle, and for the first few months minimum you will make more mistakes than you can count. But focus on learning as much as possible about sources of contamination and what you need to know to be truely 100% gluten free, and you will start feeling much better. I don't know why, but they seem to put gluten in some of the strangest places, and you would never know you were accidently eating it, except for the continuing symptoms. Also, when you have a lot of intestinal damage it takes quite a while to heal and really start feeling better.

And since you also need to be off dairy for a while (usually at least a year for people who are casein sensitive, and possibly longer), there are also a lot of hidden sources of dairy. Again, learning as much as possible is the best solution. Don't be afraid to ask questions. So many of us have struggled just like you and we are a very supportive bunch!

God bless,

Mariann

[lovegrov]

First, you almost certainly are not gluten free. If you're eating Corn Pops, which has had wheat in it for months now, you definitely aren't. What else might you be eating that has gluten?

Second, do the endoscopy. You say you are in absolute misery every day but you don't want to do this 20-minute procedure that could possibly find the cause? Make sure your doctor gives you something like Versed, which is an amnesiac. I don't remember a thing. The endoscopy should not be JUST for celiac, he can also check for any number of other things.

richard

[Guest jhmom]

Just an FYI

My Enterolab "malabsorption" test was positive and my endoscopy that was done a few months before hand was negative according to my GI doc, he did say it showed "patchy inflammation" but it wasn't enough to get a dx but he couldn't explain it either!

Just wanted to let you know.

[Niteyx13]

Cancer does not actually become painful until the last stages (although there are usually other signs of it), if it were cancer you would not have had pain for so long. I know this from my Mother being a nurse, and having older family members that were so anti-doctor, that they waited until they were in pain to go to the doctor. When they found out they had cancer it was too late.

I will be 28 in August, so we are nearly the same age. I too have often wondered about cancer myself, so I know how you feel. It becomes kind of a panic thing when you cannot figure out what is going on with your body, and when they doctors also seem to ignore half your problems.

I use a great gluten free fiber suppliment. It is even one of the clear kinds, and I can put it in my morning coffee! It is called Fiber Clear, and it is made by Nature Made. I buy it at Walgreen's, and it is alittle expensive, but it helps a lot. It is made from corn, and even says on the back "Gluten free". The citrus stuff never worked for me either. Fiber Clear doesn't keep me completely un-constipated, but it does keep me more regular than I have been in years. It wasn't uncommon for me to go a week and a half without "going" before.

As for cereal. I have found myself so paranoid about that, that I will not buy any kind that is not from a store like "Sprouts" or "Whole Foods" and it has to say "Gluten Free" on it. Someone on here has a link to name brands that do not have gluten. I printed it, and use it all the time. I no longer have it, but hopefully someone can get this to you???

Hope I have helped in some way. Like I said, I know how you feel. It is very scary, and it makes it hard to enjoy life.

[Guest gillian502]

I'm sorry for your pain, believe me, I've been there myself. You need to have more testing done, plain and simple. I don't know why anyone would complain about an endoscopy, I've had 2 of them, one I was nearly awake for and one I don't remember, and both were 100% fine! Some people choose to do them completely awake, and I would have chosen that had my dr. let me. I also am an anesthesia risk, but it went just fine for me, the drs. will watch you like a hawk if you need them to. Your dr. needs to order more tests and you need to be willing to get them. That's the only way to find the answer. Good luck.

[girlinpain]

Thanks everyone.

I had gone to a gluten free site which corn pops was the big cereal they recommended.. but everytime i ate it i got sooo sick and im getting so confused as to what to eat any more

Does everyone here hurt in the belly button region?? I am also hypothyoroid.. and im terrified of everything I have SEVERE panick attacks thats how i KNOW that procedure wont be as easy for as most nad that my adrenaline will be pumping so hard i doubt the meds will work.. I dont even leave my hosue due to the anxiety. My aunt was also telling me how anesthia makes you forever dumb and watching my grandma go downhill from being smater than me to the weirdest things after her operation it has me freaked out.. ive had too many p[rocedures and operations already and im only 28 i know i get violently ill (is anyone here drop dead nauseas?) after anesthia.. I cant even take vitimins without being wiped out for DAYS as i am just not strong enough to work them into my system or something .. i know i should do the endo.. but i also know it will be literally hell on earth for me :/

whats weird is im finding tons of ppl like ppl i play online games with have the same horrible belly button pain and they dont know what it is either... whya re dr's soooo stupid?

[j9n]

I am sorry you have been so sick. I know how you feel, I have been there myself. It is really frustrating to think you are doing everything right then find out what you are eating has hidden gluten. During my sickest time I actually gained a couple of pounds. Everything was going through me and I was starving all the time so I was eating all the time.

I was looking at some of the fast food webpages and one was McDonalds. They say their salads contain wheat and gluten. Only the side salad or Caesar salad without chicken is gluten free. I wonder if they are putting something in the chicken?

[angel-jd1]

The chicken breast itself is actually gluten free and fine to eat. However on the salads they cut it up with the same knife they use to cut the crispy chicken which would result in cross contamination. So what you CAN do is ask them to put the chicken on your salad un-cut and cut it yourself. I have done that it is easy and they are happy to do that for you.

-Jessica

[judy04]

Hi girlin pain,

I' sorry you are having so much pain. When my doctor

suggested an endoscopy at first I balked because I was

so sick and scared. He finally talked me into it and a

colonoscopy and I'm so glad that I did, beause I found

that I had severe acid reflux which is called Barretts Ring.

I have to be scoped every year because it can lead to

cancer. I have been on Prevacid and my gastric burning

has stopped. Don't be afraid of this procedure. I had a very

nice nurse who explained everything they were doing. I wasn't

really asleep but I wasn't uncomforable. I thank GOD every

day that they found this in time. As far as I know there

aren't any bad side effects, I couldn't even feel the tube

going down because they gave me a solution to drink

before the procedure. It only takes about 20 minutes.

[lovegrov]

In case it hasn't been said, you might benefit from avoiding processed foods as much as possible. Eat fresh foods. Even McDonalds salads have additives.

richard

[Guest Sarabi7]

I'm so sorry to hear that you are so ill. I recently (June) was diagosed with celiac through an endoscopy. I thought that I either had Chron's disease or celiac disease. I thank God it was celiac, because with Chron's disease, one has to take so MANY medications. I know it will be super hard. It's been tough so far. After my first nine days of being gluten-free, I was hungry for pizza, ordered a pizza for the kids, and just figured I'd have a piece. After eating three bites, I realized what I'd done and started crying. I couldn't believe that I had completely forgotten about being gluten-free! I started in with the diarrhea about 2:00 a.m. that morning, and went at least 20 times that day and the following day. I've not since made that mistake and just yesterday, after two weeks of remaining gluten-free, I've noticed some changes in my system.

The endoscopy wasn't that bad! You will be given a medication to calm you down. The doctor will then come in and spray your throat with a numbing spray. There is an IV push placed in your arm, so that the nurse or doctor can administer more medication, as needed. My nurse was wonderful. She held my hand. When I began to gag, I guess I would pull my legs up into a fetal position, and a nursing assistant came in and said, "I'm so sorry, but we've got to hold your legs still," as he layed crosswise on my legs (it didn't hurt). The doctor had an intern with him, and when he was inside, I heard him say to the intern, "Look, look there. Now THAT is an excellent example of celiac disease." The point I'm trying to make is because of the medication, even though it was a really yucky procedure, and I was nervous as all getout about it, I handled it okay. Like someone else said, it's not nearly as bad as the colonoscopy was.

I don't know where you live, but when I first got my diagnosis, I ran out to the health food store, too. Do you have a Whole Foods Market near where you live? Possibly in a town nearby? They DO take food stamps and have an ENORMOUS line of gluten-free products, which I love (including maple buckwheat flakes by Arrowhead Mills (www.arrowheadmills.com)). Also, you probably should stay away from prepared foods for now, until you learn more about which restaurants use what in their food prep, because you just never know.

Well, I'm going to try to make bread for the first time since my June diagnosis. I hope that you feel better soon.