• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
girlinpain

Still In Pain Please Read My Story :(

Rate this topic

Recommended Posts

:(

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 ...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!

Share this post


Link to post
Share on other sites

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! :D

God bless,

Mariann

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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 :rolleyes:

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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 :o 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.

B)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,916
    • Total Posts
      943,495
  • Member Statistics

    • Total Members
      67,100
    • Most Online
      3,093

    Newest Member
    Deena
    Joined
  • Popular Now

  • Topics

  • Posts

    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  • Upcoming Events