Is It Really Ibs?

[ninabear]

Hi everyone, I was diagnosed with IBS 10 years ago as a teenager, around the same time my mom was diagnosed with IBS. Prior to my diagnosis I went from 106 pounds in 8th grade to 94 pounds freshman year of high school, and had frequent stomach aches that would keep me up all night. It was like a cramping/burning sensation in the upper abdomen just under my chest in between my ribcage. My mom had severe diareah that would come on suddenly (we joked how she knew the location of every restroom in every restaurant and store in town).

The doctor had me try a dairy-free diet and then a tomato-free diet (I think, may have been all acidic food and I just remember not eating tomatoes) to see if I was allergic or had heartburn from acidic foods, but the symptoms persisted. Then they sent me for a barium test which showed acid reflux, and I went on a few different medications (even tried Prilosec though at the time it was not approved for children) and the symptoms still persisted. They had me sleep with bricks under the head of my bed to put me on an incline but that didn't seem to help either.

One thing that helped alleviate the stomach pain was Aloe Juice, which I drank regularly. I also lived on Malox tabs LOL. At one point my parents took me into the emergency room because I was up all night with severe stomach pain, and they gave me some minty liquid stuff that I think was an antispasmotic that helped the pain go away.

Finally they did an endoscopy to rule out Crohn's disease, and said everything as fine (no sign of reflux either) and I was diagnosed with IBS. I went on Levsin and stopped the Prilosec, and after a while stopped the Levsin too as my symptoms got a lot better and the stomach aches much less frequent. I don't remember being tested for Celiac but my mom said last weekend she thought both of us were tested although she can't quite remember.

I am waiting for the doctor to dig up my medical records from their storage facility (LOL), and then I will post the results of any tests I had here. In the meantime I am continuing to eat gluten because if I find I was never tested for Celiac, I want to get tested.

I still get stomach aches on occassion and have to sleep sitting up in bed. I always tell people I have a sensitive stomach, and in college when I would drink at parties I always got really hungover and would throw up the next day and have diarreah feel drained for days! I still get a sharp shooting pain in the lower left side of my abdomen on occassion that makes me buckle over in pain, and then a few minutes later I usually find I have to go to the bathroom. I also had persistent pain in the lower right side of my abdomen a couple of years ago, and had an ultrasound but by the time I got the ultrasound the pain was gone and the doctor said it was probably a small ovarian cyst that burst before I got the ultrasound.

I tell people I have "weak hands" which I attributed to playing the piano (which I only play probably 1 hour a week) and typing on the computer. I always have to have my husband open jars for me, and if I play the piano too long my hands start to ache and get shaky. The pain was so bad I finally asked the doctor about it a few years ago and she did xrays to rule out arthritis. The results said I didn't have arthritis and we never explored it further.

I also had severe shoulder pain behind my left shoulder blade for years growing up - the doctors called it growing pains until finally one doctor diagnosed me with a taut tendon and I went to physical therapy and ultrasound therapy for a year until it started feeling better...well a few years after physical therapy it is back to hurting pretty much all the time.

When I was pregnant I had SEVERE morning sickness and actually LOST weight (started at 112 lbs, then down to 109), and had to be put on anti-nausea medicine so I would actually eat something and start gaining weight. I ended up gaining a healthy 35 lbs and gave birth to a perfectly healthy 8lb baby girl. She is breastfeeding still at 6 months old and has only eaten rice cereal, avocado and sweet potatoes (we just recently started introducing solids). She hasn't eaten gluten yet, but may have consumed trace amounts through my breastmilk.

My husband is concerned that he may have Celiac disease because of his variety of symptoms (chronically underweight, acne, wintery rash that may be DH, receding hairline, severe stomach pains as child) and his family history of digestive problems (aunt/uncle with IBS and colitis, brother with IBS and sister with Crohn's). He's already starting a gluten-free diet and has an appointment with a gastroenterologist in two weeks.

Doing research for my husband is what made me start to wonder if I might have Celiac too, especially when I read about people whose IBS symptoms disappeared after being gluten free! Based on my story above (sorry it's so long), what do you all think?

[Salax]

I think it's very possible. I was dx with IBS prior to celiac. I think that seems to be the norm for many celiac-ers here. I would have the doc run the test pronto so you can find out and stop eating gluten to see if it helps. Remember though, gotta cut out the dairy as well when you start the gluten-free road to let your body heal.

Let us know what happens.

[ang1e0251]

It sure could be celiac disease but that's why it is called the Great Pretender. Those symptoms fool dr's all the time into dx'ing other conditions. After all, they were taught that celiac disease is rare so they never expect to see it.

You are smart to continue to eat gluten. Your husband should also until you are tested. If you go gluten-free now, it will skew your results. Hang in there. Make sure you get a full celiac panel and ask for your own copy of the results to take home. If they seem confusing to you, post the results here. There are those who can read the tests for you.

[ninabear]

I tried to convince my husband to wait but he refuses to wait and so there's nothing I can do, plus he's started feeling better already and now I'm jealous! But I really want to be diagnosed at least through blood tests before I go gluten free.

Part of me hopes my medical records show I was tested and it was negative so I can just start right away on the diet, but the other part of me hopes I wasn't tested before so I can get tested because I have a strong feeling it will be positive.

Another symptom I've struggled with for years is fatigue. I never pieced it together though, and always thought it was because of what was going on in my life at the time. In high school I worked two jobs and was in honors classes and blamed my fatigue on that. Then I blamed my fatigue on college stress and internships. Then I blamed it on the 3 hour daily commute to the city to work, and then when I got a job close to home I blamed the fatigue on the stress of adjusting to a new job. Then I got pregnant shortly thereafter and blamed the fatigue on that. Now I'm a new mom and blame my fatigue on that! But COME ON ALREADY, is EVERYONE always so freakin tired and worn out from daily life? I hope going gluten free gives me the energy I have longed for for so many years!

[RiceGuy]

Just adding my voice to the others - I think there is a distinct possibility that you have Celiac. I'm sure you know this, but no matter what the test results say, don't be discouraged. Try going gluten-free, and see how you feel!

[Sweetfudge]

I was dx with IBS, then w/ celiac, then again w/ IBS. So I wouldn't rule it out completely. If the tests show celiac, get on the diet, and see how you feel. I had to cut all dairy out after reintroducing it to my diet. So, "technically" (or at least, according to my GI) I have both. Which to me, it means, I have celiac, plus something else (yet to be determined....). I'm not convinced that it is IBS, but I know I do feel better when I follow the diet strictly, and use fiber supplements. We'll see.

Good luck with the testing

[ninabear]

Aw man! The doctor's office just called and said since my last visit was 11 years ago, they no longer have my medical records in storage!

So now I'll never know if they tested me for Celiac, since my mom isn't sure! I guess I'll talk to the new doctor when my husband goes to see if I can schedule an appointment for them to test me too.

[happygirl]

Even if you were tested, there are newer/more sensitive tests for Celiac since you were last seen by those doctors. You may not have had it then/tested positive then, but you could test positive now.

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[nutralady2001]

I started having problems as a child in the '50's. By the time I was in college in the last '60's I was diagnosed with "mucous colitis" I was so sick my last year I couldn't get permanency my first year teaching and had to have another medical at the end of it before they granted me permanent status.

Fast forward a few years and I was given the "IBS" tag

FINALLY 2 years ago after nearly 50 years of ill health I was diagnosed with Coeliac Disease ( blood and biopsy)

Don't accept an IBS diagnosis

[ninabear]

Thanks everyone, and thanks for the link HappyGirl. I just got back from the dentist and I'm so disappointed to find I have 6 more cavities, including one under a cap and I have to have the cap removed! Granted I hadn't been to the dentist in a year and half, but I had 4 cavities the last time I went. I brush twice a day and floss once (don't worry, moving forward I'm brushing and flossing way more often than that!!!), and I have had 10 cavities in two years. I've struggled with cavities all my life.

I looked up dental enamel defects, and I definitely have the discoloration and translucent thing going on with my teeth. My mom said the dentist told her when I was younger that it was caused by a medicine I had to take as a child due to a bad ear infection. But then I found this online:

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Dental enamel problems stemming from celiac disease involve permanent dentition and include tooth discoloration

[nutralady2001]

Quite possibly. I've had crappy teeth my entire life it's been a nightmare especially in childhood when treatment was more barbaric than it is now....... *shudder*

Always had dentists "telling me off" because I wasn't looking after my teeth would get sooooooooo frustrated because I knew I was !

[ninabear]

I have a question: If the doctors did an endoscopy 11 years ago and then subsequently diagnosed me with IBS, does that mean they did not see any intestinal damage on the endoscopy, and therefore I cannot have Celiac?

[ang1e0251]

I don't know much about IBS. I thought it was diagnosed in the large intestine not the small like celiac disease. Is that right or wrong?

[ravenwoodglass]

I have a question: If the doctors did an endoscopy 11 years ago and then subsequently diagnosed me with IBS, does that mean they did not see any intestinal damage on the endoscopy, and therefore I cannot have Celiac?

No it doesn't. Even if they scope you today and don't find damage it doesn't mean you don't have a problem with gluten. You have 22 ft of small intestine and damage can be hit and miss and if the right place is not biopsied you can end up with a false negative. There are also changes that precede the total loss of the villi that are related to celiac but not all doctors are aware that they are.

Are you sure the previous test was an endo? Usually if they suspect Chrons or Ulcerative Colitis the test done is a colonoscopy.

[prayin4achange]

Born and raised in Portland, OR

Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, the crucifer family (broccoli, cabbage, etc), coconut milk

I noticed that you and I have a lot of similarities. I have also been diagnoised with IBS and hypoglycemia, but no matter what Ive done it hasnt helped.. EXCEPT for eating almost no grain carbs. I also have problems with dairy. Im not sure about yogurt yet, though. Can you eat yogurt or do you avoid it too, and what do you replace your dairy with?? Im sorry for so many questions but it's wonderful to talk to someone who has experienced the same things and not a doctor Not consuming dairy and gluten seems to really help so far, but what DO you normally eat and why can't u eat poratoes or the crucifer family or coconut milk? I can understand beans cause I can almost never eat those without having major stomach & gas probs. How are you feeling these days? I think you said the diet is working well for you. I always am happy for those who can improve these AWEFUL symptoms. The worst is you cant just get away from food. You even have to eat 3-5 times a day! It's a never ending cycle you can't run away from.

THanks

Jenn

[ninabear]

I'm positive it was an endoscopy (through my mouth lol). I think they may have been trying to rule out Crohn's disease, though not sure if that would require a colonoscopy too. I've never had a colonoscopy, though my mom has and in fact I think that's what they did to diagnose her IBS. Maybe they did the endoscopy because it was my stomach that hurt all the time and I didn't have as many bowel movement-related problems?

[ang1e0251]

When my daughter was 14, she began to have daily stomach aches. These were really causing her problems at school and I could not put together a pattern. After a few trials of nonsense, she had an endoscopy to look at her stomach which the dr thought might have problems. He told me if he saw nothing he would take a biopsy from the intestine to see what that might tell him. After the procedure, he came out to show me pictures of her stomach. It looked pink and healthy. He agreed with that and said he saw nothing wrong and would now see what the biopsy told him. They called in a few days with the lactose intolerant dx. I was so relieved! I also was LI but my symptoms were completely different so I never put it together.

My point is, your dr may have done an endoscopy following the same process our dr did. If he took only one biopsy from just inside the intestine, that is not enough to dx celiac disease. Especially if they weren't even looking for it. So don't assume you've been tested for celiac disease. I recently called up DD's test results from that day and they didn't test her for celiac disease.

The test was not that big a deal, I had one. Go for it if they'll test you for celiac disease. Yes, it would have been nice if it already would have been done but since it wasn't, it's a good time to have it done and done right.

[ninabear]

Thanks for your help everyone! I just really wish I had my medical records because now I feel like it's all a mystery, who knows what the doc tested for back then! My husband is right - this is exactly why we need electronic medical records.

My appointment with the gastroenterologist is in two weeks. I'll let you all know what he says! I hope I don't have to convince him to run the bloodwork

I'll bring a list of the recommended Celiac Panel tests to make sure he tests for everything!

[ravenwoodglass]

Thanks for your help everyone! I just really wish I had my medical records because now I feel like it's all a mystery, who knows what the doc tested for back then! My husband is right - this is exactly why we need electronic medical records.

My appointment with the gastroenterologist is in two weeks. I'll let you all know what he says! I hope I don't have to convince him to run the bloodwork

I'll bring a list of the recommended Celiac Panel tests to make sure he tests for everything!

Since celiac can develop at any age unless the previous records stated that you had positive testing for celiac they would really be useless. Hopefully you won't have a hard time getting the blood work done, when it came time to test my husband and the doctor was reluctant I simply said "well humor me". He got the test and it was positive.

[Sweetfudge]

Born and raised in Portland, OR

Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, the crucifer family (broccoli, cabbage, etc), coconut milk

I noticed that you and I have a lot of similarities. I have also been diagnoised with IBS and hypoglycemia, but no matter what Ive done it hasnt helped.. EXCEPT for eating almost no grain carbs. I also have problems with dairy. Im not sure about yogurt yet, though. Can you eat yogurt or do you avoid it too, and what do you replace your dairy with?? Im sorry for so many questions but it's wonderful to talk to someone who has experienced the same things and not a doctor Not consuming dairy and gluten seems to really help so far, but what DO you normally eat and why can't u eat poratoes or the crucifer family or coconut milk? I can understand beans cause I can almost never eat those without having major stomach & gas probs. How are you feeling these days? I think you said the diet is working well for you. I always am happy for those who can improve these AWEFUL symptoms. The worst is you cant just get away from food. You even have to eat 3-5 times a day! It's a never ending cycle you can't run away from.

THanks

Jenn

Jenn,

Sorry I didn't address all this in the email I sent you. I'm posting it, just for anyone who might also find it helpful. Then I'll answer your other questions

As far as your health situation goes, I say, do what you think is best. If the doctors don't want to help, do what you can do. I had to go to my doctor and request the test for celiac, after a year of him guessing and choosing random diagnoses. Then, once I was tested, and diagnosed, I was sent to a dietitian who works with the hospital. All she did was hand me a stack of papers she had printed from this website about what celiac was, and how to follow a gluten-free diet. Now, I had already found this website on my own, and had read everything she handed me. She couldn't even answer my questions...

So, I am not saying that doctors are a crock. I'm just saying, they work a certain way, and are often not concerned enough or educated enough with what WE the patients need. I have had to be proactive with all of my intolerance testing...requesting allergy tests and such on my own. I would see if you can get an allergy test done. I had the skin prick test done by an allergist, and came back negative for everything! But at least I ruled out actual allergies. So then I knew everything I had was an intolerance/sensitivity.

I'm still not convinced I have IBS, even though the diet helps (when I follow it). But, I'm tired of playing detective, so I've just been putting up with things lately. What I have done in the past to figure out what was making me sick, was to go back to a very basic, IBS-friendly diet for a few days, then introduce the food that I was wondering about. Kind of a mini-reverse-elimination diet thing. It's how I figured out that potatoes are a problem for me. I peeled and boiled one, and ate it with my bread for a day...that's all I needed to convince me on that one. If there's more than one food, I would give it a day or two just eating the one, then switch to the next. I've done a lot of reading on elimintation diets...but never had the willpower to actually do one.

One thing that I take regularly that I would recommend if you're still having troubles is fiber. I don't know if you've visited the help for ibs website (helpforibs.com), but there's a lot of great resources there. One of the best things I discovered, which really helps me feel better, no matter what I'm eating, is the acacia fiber that is sold on that website. It's a fiber specifically to help with those irritable bowel symptoms. I've found it at my local health food store, and on amazon. I did a test last week, to see if it was really helping, and was it ever! I actually just ran out of it, and went a few days without. So that might be something to look into to help get you feeling better.

Hope this helps! Interesting that we have so much in common

Ok, so as far as yogurt goes, I don't touch it. I'm on Align, which is a probiotic my GI put me on. It's specific to people with IBS-symptoms, and I have noticed a difference when I'm on it (or rather, I noticed a difference when I forgot to go get some, and went 3 weeks without it!). You can find it at most pharmacies, or order it online, or you can get a prescription for it, but with my insurance, all that did was knock off the sales tax.

To replace dairy, I pretty much don't. It was really hard for me, but I couldn't find anything that I liked to replace milk as something to drink or put in cereal. So I don't even try now. I do eat rice chex plain, just like chips, as a snack. I do use milk replacements in cooking and baking. I usually use soy/almond milk (which ever I can find cheaper), and I'll use coconut milk in some things (although, as far as the IBS diet goes, coconut is a no-no...so I try and avoid it mostly.

Cheese has been the same. I tried all the soy/rice replacements, but wasn't so impressed with any one. I have tried goats cheese, but don't much care for the flavor. Except for one recipe I tried, for a cheesecake, which was half cream cheese and half goats cheese. But that was back when I was eating real cream cheese, so I don't know how it would be w/ a substitute.

Can you eat soy? I really like Tofutti products. I use their cream cheese for everything! On sandwiches, in recipes, I even made cream cheese frosting for cookies the other day, that my gluten-eating relatives loved!!

I don't eat potatoes or crucifers because they cause the same reaction in me that beans do. And I still haven't ruled out coconut milk completely, but I try and use it sparingly, due to the IBS thing.

For the most part, I feel really good. Still have up and down days, but I also believe that not just what you eat affects you, but HOW you eat it does. I know when I'm in a hurry, and don't take the time to actually sit down and eat my food, I feel sicker, even when I eat stuff I know doesn't bother me. On the same line, I believe I am very much affected by life stress, and that can cause upsets that have absolutely nothing to do with food. My mom used to joke growing up that she had a stress-baby (as she held her belly) when she got bloated (which she did often from stress).

Here are a couple of other things that help me feel better:

Exercise! Seriously, I used to be one of those people that rolled their eyes when people raved about exercising. But I've gotten to the point where my body really does crave it. Especially the stretching afterward.

Water - probably b/c of the fiber, I drink about 10-12 glasses a day, at least. I've been told by massage therapists and doctors that my skin is so healthy, and they all say it's because I drink so much. It means peeing, a lot! But I feel like it helps me so much. I don't drink anything other than water and tea. That's the next thing I recommend...Fennel Tea! This stuff is great for bloating and gas. I buy mine from that help for ibs company I mentioned above. Its kinda boring, just drinking tea and water, but I KNOW soda and fruit juices bother me. Sometimes I'll splurge and have a lemonade, or some V-8 juice. Or as a dessert, occasionally, I'll make me a fruit smoothie.

One more thing that helps me when I'm feeling sick to my tummy is my trusty bean bag. Actually, it's a corn bag, and it smells better than beans. That kind of moist heat is great when you have cramps or bloating.

Anyway, good luck in your quest to feel better! You can always send me a message, or to see more of what I'm eating, you can check out my food blog. Click on my name, and select the option that takes you to my profile. Then click on the link to my website (on the left hand side of the page). Hope this helps