Diagnosed W/ Ibs, But Seems To Be Cd To Me!

[mightymorg]

(I hope I'm posting this on the right board!)

Hi everyone! I'm a 20 yo female that has been having a wide range of symtpms for the past 8 or 9 months. I was diagnosed as having IBS-C, without having done a colonoscopy or endoscopy, and was prescribed Zelnorm by my GI. That worked wonders the first 1.5 weeks, but without changing anything my symptoms came back, and even more severe. I discovered this board last week, and had not previously known of celiac disease, but now am pretty convinced I have at least a gluten intolerance!

My past medical history:

I suffered from anorexia for about 7 months, starting almost 2 years ago. I have been back at a healthy weight for me (~118, 5'6" tall). I notice that quite a few other members here have also suffered from an ED, and I wonder if there is a connection.

I have had only one abdominal surgery, which was for a cyst on my fallopian tube about 3 years ago.

Growing up, I was extremely picky about food, remember always having a "tummy ache" , not handling dairy too well, bruised easily, always had low Iron, and even though I ate enough for 4 adults, I remained very underweight. (Maybe I had a sky-high metabolism, I don't know!)

Prior to more recent symptoms, nothing changed! I am majoring in nutrition, so I am a full time student in a very committed relationship. My symptoms started shortly after the relationship began, but it is a wonderful one...I'm actually the happiest I've been in several years!

My Symptoms:

bloating, gas, EXTREME distention

gas is extremely foul (when I can actually get it out)

major constipation-now is hard to relieve even with laxatives and an enema!

when I do have a BM, it floats and is accompanied with an alarming amount of mucous, also very frequently notice lots of undigested food

bad acid reflux

insomnia

dizzyness

itchy skin

headaches

lighter and lighter periods

low Iron

upper abdominal cramping

my hair is falling out like it was when I was at my lowest weight!!

nausea

Now, I DO have an appt for a colonoscopy, as my GI wants to check for any obstructions...that is a week from Wed. He also put me on Miralax, to take once a day, and I started that Friday, but have yet to have any effects from it.

My mom is also having a lot of GI problems, and is seeking a GI doctor from that...she has similar symptoms. I also found out that my brother, who is 30, started having many of these problems when he was also around 20. He had extreme intolerances to gluten, as well as some other foods I'm not aware of, and has been following a gluten free diet for around 10 years.

Because no gas or stool softeners or laxatives are working, I don't know what to do!! Y'all are SO informative, and I've learned so much from reading your posts, I would very much so appreciate any opinions! I'm tired of going to doctors and trying to get them to listen, and am already attempting to try going gluten-free...I understand it is a committment, and could possibly make any tests for this intolerance and celiac disease come out negative. I'm willing to commit myself to it, but I'd like to know what y'all experts think!

[danikali]

OH my God! I am a 21 year old female and having ALL OF YOUR SYMPTOMS! I also am going to the GI a week from Wednesday and I am demanding that my doctor test me for Celiac.

I was also diagnosed with IBS, and the IBS also started after an eating disorder. And every year, it just seems to be getting worse and worse. (And I don't have an eating disorder anymore, or for a while).

Anyway, I was only recently tested by a GI for things like tumors and Crohns Disease (with and upper GI and small bowel series), but because I didn't have D and only C, or alternating, my first GI completely wrote off Celiac disease.

Anyway, I am in the same boat you are, so I can't give you too much information, but it's interesting to hear such a similar story to mine. Plus, I can almost guarantee (99%) that I have Celiac, or at least gluten intolerant, because I notice the symptoms get worse when gluten (and dairy) actually, are in my diet.

But I recommned that you also DEMAND your doctor tests you for Celiac, because they most likely won't suggest it unless you have the "classic symptoms"......D, loss weight, Northern European heritage, etc. Also, look up Enterolab on the internet because if you are not celiac, they have very specific tests that diagnose you as "gluten intolerant" (if you are) before your villi are actually destroyed and you are a full blown Celiac.

And if you want to read my story, as it is so identical to yours, look under the pre-diagnostic, testing posts, under "Am I crazy?" with my name, Danikali.

Good Luck!!!!

[mightymorg]

Thank you for replying! It's nice to know we aren't alone, right? lol

We DO have very similar symptoms...I started going without gluten over the weekend, but now I have some bad headaches (withdrawal already?). I know it takes a while, so I'm not looking for an immediate change.

I did look into the enterolab, but it's kind of expensive, and I just don't have that kind of money right now. My boyfriend would buy it for me, I know...but I don't want him to have to. I did look into the finger-stick test from York, and I'm considering it, assuming it's relaible!

[danikali]

Thank you for replying!  It's nice to know we aren't alone, right? lol

We DO have very similar symptoms...I started going without gluten over the weekend, but now I have some bad headaches (withdrawal already?).  I know it takes a while, so I'm not looking for an immediate change.

I did look into the enterolab, but it's kind of expensive, and I just don't have that kind of money right now.  My boyfriend would buy it for me, I know...but I don't want him to have to.  I did look into the finger-stick test from York, and I'm considering it, assuming it's relaible!

<{POST_SNAPBACK}>

Yeah, I know what you mean about the expense. I can't really afford it either! hahah but I bought it just because I am so desperate to know for sure. Then, I know I will be completely faithful to the gluten free diet. And the York test looks good too, except I wonder if it tests for "gluten intolerance" too, or just Celiac Disease. It's like, I have SO many signs of Celiac disease and malnutrition, but I feel like if I completely rely on just doctors, I will never get an answer or a positive diagnosis! Have you been to a lot of doctors too?

[nettiebeads]

Hi and welcome to the board!

Since celiac disease has nearly 200 symptoms and everyone seems to have their own personal combination and severity, it is difficult for drs. to dx. It is called the great imitator of diseases. Constipation IS one of the symptoms. I don't know why drs. don't want to do Celiac panels or anything. It's not like they're paying for it! My personal theory is that since celiac disease is treated by diet and not by any meds promoted and pushed by the drug companies, that it's out of their comfort zone so they don't bother. My own gp (who did his residency under my now retired former gp who dx'd me) admits that he doesn't understand celiac disease, but has done bloodwork to make sure I'm getting the nutrients I need. And he's glad I found this site. But I digress -

Your symptoms do make celiac disease a very likely possibility.

If you go gluten-free now, it will skew any tests that the dr. may order.

as for your C, instead of laxitives, have you tried fiber pills? My gi recommended Citrucel - it's gluten-free and works. I don't think the laxitives are a good thing - constant use does result in a rebound effect and can keep the muscles from working properly. But I will admit to using MOM when things get bad for me.

Keep us posted!

[danikali]

I just want to add that the fiber pills, Citrucel pills, DO work, but not long-term. I was using them for a while, and they were working. But then I noticed that I needed to use more at a time to make me go. And eventually, they were just as useless as eating a lot a lot of high fiber food. At least in my case. But do try them, if you haven't yet, because they are the best natural laxitive, without any extra pains and side-effects.

Also, I think it's interesting that your doctor admitted he didn't know that much about Celiac. That's sad, isn't it? And it makes me even more wary of doctors, knowing now, from this website, how many people went against their doctor's grain, and proved them wrong. Like you said, it doesn't hurt them to test you, so what's the problem?

Someone told me to lie and say that my cousin was diagnosed, just to get the doctor to test me. I'm thinking this is really something to consider!

[mightymorg]

Thank y'all both so much for replying! This is the first GI I have been to...I *do* like him, yet I feel like y'all in that he may not be considering celiac disease/gluten because of some atypical symptoms. He is so much better than my PCP, though-she told me to drink more water and eat more brocolli! Well, DUH...I can't say I haven't learned anything about that being a Nutrition major!

I have tried Citracel...and Metamucil...I eat enough fiber as is, but neither of those helped. It's like my intestines are in lock-down and are rebelling against me! (I'm sure I'm not the only one who feels that way!)

I swear, I feel like I have my own alcohol brewery in my guts with all the fermentation that's probably going on from nothing going anywhere!

[hthorvald]

You mention all the symptoms that I had. And, I was diagnosed with IBS. My recommendation is to demand a blood test for celiac disease AND an endoscopy regardless of the blood results. Since your mom has similar symptoms, have her checked, too.

As a child I was anemic, diagnosed with anorexia (even though I just hated to eat food because I felt so awful afterward) and diagnosed with ADD. That turned out to be a cloud brain or foggy brain or whatever it's called. Bloating, severe constipation, and gas that rivaled my husband's after a burrito feast!

Just stand your ground. Your doctor works for you. If he doesn't cover all bases, then take your business elsewhere.

Good luck and keep in touch.

Helen.

P.S. One suggestion: don't go gluten-free before an endoscopy or other celiac related tests. If you decide to go gluten free and you feel better, you'll have to go back to eating glutens if you find a doctor willing to do specific tests.

[jenvan]

mighty morg-

i was also diagnosed with IBS initially...that's a common misdiagnosis for celiac. i also took zelnorm, helped for a little while. you do have some celiac symptoms...and it is definitely a possibility. have your gi doc run the simple blood test for celiac--that is a pretty easy way to rule it out or decide if more investigation is necessary. if you have insurance, the test should be covered, depending on your plan. info is below...

Go here to see more symptoms: Open Original Shared Link

Go here to see how one gets tested: Open Original Shared Link

[mightymorg]

Thank you! I do have a question about some of my symptoms: What does it mean to have all sorts of undigested food in a BM, and why is there so much mucous with it? Sometimes it's literally covering anything that comes out. Even when I had to take an enema, most of what came out was globs of mucous...TMI, I know. Do those problems indicate malabsorption?

[darkangel]

Mucous is your intestine's way of trying to protect from harmful foods. It's definitely a sign you're ingesting something your body doesn't like.

One of the problems caused by eating the typical "American" or "Western" diet is that high fat/low fiber has a tendency to stick to the inner walls of the intestinal tract. The body responds by forming a mucous layer over materials that impact the intestines.

Over a period of years a buildup can occur to the extent that there is a decrease in available binding sites for friendly bacteria, a decrease in nutrient assimilation and an increase in risk for colitis, diverticulosis and colon cancer.

[mightymorg]

Wanted to say that I took some advice and called my Dr's office to request a celiac blood panel when I go next week. However, this pain and constipation is unbearable...the Zelnorm is still not working, and even though I've been taking Miralax, I've only had 2 small BMs in the past 2 weeks. My last one was early yesterday, but was so alarming; I know something is wrong: floated, mucously, pale, some parts greenish, and a variety of undigested food. I'm getting so hungry, but I have no room for any of it to go!!

[darkangel]

I was originally diagnosed with IBS, then "upgraded" to ulcerative colitis several years later. At one point, a GI told me I had both. I've always felt intuitively that it's all a continuum... all pieces of one big picture. I was diagnosed with temporomandibular jaw joint syndrome around the same time I got the IBS diagnosis and always felt like they were related, although no doctor would ever agree with me.

I just stumbled across a very interesting site:

Open Original Shared Link

Download and read his report on IBS. It's a lengthy read, but I've been very impressed with the information and it seems to validate my "gut" feelings about everything being interrelated.

[jerseyangel]

Darkangel, I was DX with TMJ also about 6 mo. before the Dx of Celiac. Do you think the 2 are related? It seems like the more posts you read, the more info. you can piece together. Thanks.

[Rachel--24]

I was dx'd with severe TMJ over a year ago. I could hardly open my mouth. I was sent to a TMJ class, saw a TMJ specialist and a splint was made for me to wear at night. I knew something was causing the TMJ...it just came out of nowhere after already having numerous symptoms for 2 years. I wore the splint every night for a year and it helped. Ever since the day I went gluten-free I have never had to wear the splint again...the TMJ is no longer a problem. This is after being told the TMJ was so bad it could not be fixed.

The TMJ will flare up after I'm glutened or if I eat things that I'm sensitive too. Basically when I feel that my gut is particularly "leaky" and my immune system is responding to numerous things...the TMJ comes back. It is in my opinion *definately* related.

[Rachel--24]

Thank you!  I do have a question about some of my symptoms:  What does it mean to have all sorts of undigested food in a BM, and why is there so much mucous with it?  Sometimes it's literally covering anything that comes out.  Even when I had to take an enema, most of what came out was globs of mucous...TMI, I know.  Do those problems indicate malabsorption? 

<{POST_SNAPBACK}>

Before I went gluten-free...when I was at my worst and losing lots of weight all my food was coming out undigested. If I ate rice...it was just as if I had dumped all the rice into the toilet w/out ever eating it. All my food was pretty much visible. I also had some mucous as well. Are you losing weight also? I think this would indicate malabsorption...I definately felt that malabsorption was a BIG problem for me but my doc ran some bloodtest and said I was fine.

Enterolab stool tests came back positive for high malabsorption. My doctors still say I have no malabsorption whatsoever based on their test coming back normal..I think it was albumin or something like that.

[darkangel]

Darkangel, I was DX with TMJ also about 6 mo. before the Dx of Celiac.  Do you think the 2 are related?  It seems like the more posts you read, the more info. you can piece together.  Thanks.

<{POST_SNAPBACK}>

There ya go... there's another vote for "it's all interrelated." Mine would switch off. I'd have a jaw ache, take a bunch of Tylenol or ibuprofen, the jaw ache would go away and the gut problems would kick in.

When I put myself on a strict totally grain-free diet (www.scdiet.org), my TMJ disappeared and I even had a period with no PMS and no cramps. Coincidence? I think not.

[jerseyangel]

I've been gluten free 5 mos. now and my jaw does not hurt anymore. I had a bite-guard made when I was DX'd and it helped but for the past couple of months, I haven't worn it and my jaw is fine--I don't clench at all during the day and don't think I do at night as there is no more neck or jaw pain in the morning. I have to agree with you--its all somehow connected.

[Rachel--24]

When I put myself on a strict totally grain-free diet (www.scdiet.org), my TMJ disappeared and I even had a period with no PMS and no cramps. Coincidence? I think not.

<{POST_SNAPBACK}>

I had terrible PMS...but I dont even know if it was PMS since it was there all month long. Anyways my "PMS" symptoms would get much worse before my period but they never really went away. My periods were also very light...lasting only a day or two. The doctors all said this was just "normal" stuff. I didn't believe it...I had never experienced ANY of it until I got sick and it got worse and worse over the 3 years. After being on the diet for only 1 week I got my first normal period in 3 years...lasted a week...no PMS. Its been fine ever since. So many of my symptoms that the doctors told me I would just have to live with went away immediately after going gluten-free. They had told me some type of depression or brain imbalance was causing all my symptoms...they actually thought an anti-depressant could "cure" me. I didnt fall for it and I didnt take the pills...instead I changed my diet and the depression was the first symptom to go away.

[mightymorg]

Before I went gluten-free...when I was at my worst and losing lots of weight all my food was coming out undigested. If I ate rice...it was just as if I had dumped all the rice into the toilet w/out ever eating it. All my food was pretty much visible. I also had some mucous as well. Are you losing weight also? I think this would indicate malabsorption...I definately felt that malabsorption was a BIG problem for me but my doc ran some bloodtest and said I was fine. 

Enterolab stool tests came back positive for high malabsorption. My doctors still say I have no malabsorption whatsoever based on their test coming back normal..I think it was albumin or something like that. 

<{POST_SNAPBACK}>

I think I have lost a few pounds, actually...it makes sense, if I'm not digesting a lot of my food! Plus, I know the past few days I haven't been eating a lot, as I simply don't have any more room in me! And what you mentioned about PMS and all that...that's happening to me too. I've been on bc for years, but the past 3 cycles have started later and been lighter each time. I was actually suppossed to get mine 3 days ago, and I know I'm not pregnant.