Glutened Vs. Uterus

[melmak5]

I am still in the recently-diagnosed-and-in-recovery phase of things and up until Saturday I was doing really well.

I became really sick Saturday, regurgitating food/water, broke out in red spots on my abdomen (NOT DH), sweating profusely, exhausted. Then Sunday I woke up in sharp stabbing pain in my lower abdomen and a small about of blood from my rectum.

Monday this continued, Tuesday it got worse and I spent 6.5 hours in the ER... they found no reason for me to be in pain.

A friend mentioned today, "have they checked you for endometriosis?"

I have been tested for almost everything possible in my abdomen, except my reproductive system.

There is a CHANCE that all of this hell might be from some cc on Friday night, but I want to cover all bases here (and be able to get up off the couch!)

My question to the ladies...

How do you distinguish between lower GI pain/troubles and those of your uterus. (I thought I was pretty good at all of this, but I am wondering if I am confusing the 2)

Many thanks in advance,

Kristina

(PS - feel free to pm me if you are more comfortable)

[Fiddle-Faddle]

I wish I knew how to help.

How did they rule out any reasons for you to be in pain? What diagnostic tests did they run?

Did they do an ultrasound of your lower abdomen? Would that have ruled out endometriosis? Are you ovulating right now? (Is it about 10-14 days since the first day of your last period?)

I 'm so sorry you've been in such pain and I hope it resolves on its own. Immediately! And never to return!

[oceangirl]

I think it's important to get your reproductive system checked out. You may need an ultrasound (transvaginal) amongst other things. Look up endrometriosis- it has some symptoms that mimic celiac and vice versa. It's tricky sometimes to know what is causing some symptoms. Your age may be important- if you are peri-menopausal, for instance, that could exacerbate celiac or mimic it. Just some thoughts... I have a uterine fibroid and very intense peri-menopausal symptoms (I'm closing in on 50). I have a transvaginal ultrasound to check ovaries twice a year.

Pain is NO good. Hope you feel much better soon.

lisa

[melmak5]

Thank you both.

I am 26. They said I had "perfect urine" and all of the basic blood work/blood chemistry came back normal. I have no infection, nothing wrong with my kidneys, pancreas, spleen or liver.

I am not ovulating (to my knowledge, but this whole ordeal had kinda thrown everything off), my last period was just over 4 weeks ago. I am not pregnant.

I am hoping that there isn't something else wrong, but a bunch of the symptoms match. I just haven't had any gluten since I was diagnosed, so I am not really sure if this is how my body reacts (which would be horrible and sever and really wrong)... but I guess possible.

Thanks for the support. Hopefully it will pass, but once I start my new job I will get the rest of me checked out.

[Fiddle-Faddle]

Hi, I'm not trying to cause panic here, but I did find this:

"Generally, ovarian cancer does not cause many early signs until the cancer grows. Women should consult their physician if they experience pressure or fullness in the pelvis, abdominal bloating, or changes in bowel and bladder patterns that continue and/or worsen." That was from the Johns Hopkins site.

Basic bloodwork would not have ruled that out; the JOhns Hopkins site mentions transvaginal ultrasound as a diagnostic tool.

[jerseyangel]

I had a large uterine fibroid (8cm), ovarian cysts and stage 4 endometriosis. The fibroid and the cysts were detected via ultrasound/transvaginal ultrasound.

Endometriosis, however, can only be diagnosed through laporoscopy. (Surgical procedure where the area is viewed through small incisions)

Your sharp, stabbing pain could be related to endometriosis--the pain I had from that almost made me pass out several times. It was hard to distinguish where this pain was coming from--if it was pelvic or digestion-related. It was located on my lower left, about 2 inches in from my hipbone.

At the time, a lot of people told me it was trapped gas--and it could have been. Except it wasn't

My suggestion would be to see a gynecologist to make sure that it isn't pelvic.

[melmak5]

My pain has been about an inch to the left and right of my navel, and in the corners, right inside my hip bones.

I will definitely get a pelvic.

Doctors cannot get enough of me.

Thank you all. (I think I am in denial that there is anything else possibly wrong with me, but I will get it looked at)

[oceangirl]

Melmarl 5,

The things that Patti and Fiddle-Faddle mention are what was concerning me as well. (And I will add that gluten gives me a horrible, ache and sometimes stabbing pain in and around my left hip-bone) Be sure to INSIST on a transvaginal ultrasound- it is more revealing than the other. And it really COULD be trapped gas, but you just want to be sure. Patti's story is very helpful, too. Ovarian cancer is a scary thought but it most likely is gluten or something else. But, it's something you don't want to fool around with. Thinking of you...

lisa

[dally099]

i too have (or rather had since i had a hysterectomy last year) and its diagnosed with the laperoscopy. you will have to insist becasue of your age most docs are doubtfull thats the problem, i was 22 when i was diagnosed and i had to INSIST on the surgery to check and gee wiz sure enough that was the problem. cysts can cause a lot of pain when they burst, usually down by your hip bones and a little twords the centre. you can have a cyst burst right before your period is due, or ovulation pain as well. i would get the intrauterine ultra sound done to check for cycsts they can also see if you ovaries are a little inlarged, which can be due to a cycst (irritatation) that kind of thing. good luck and keep us posted!!

[Mickide]

Hope you feel better soon and get it checked out when you can. It sounds awfully painful

[wolfie]

I have also had the severe pelvic pain and mine was related to ovarian cysts. I usually get US (both transvaginal & abdominal) at least once per year to check to make sure that all is okay. I am also back on the pill, even with tied tubes, to help control the horrible pain, periods and cysts. I was a hormonal disaster area and losing way too much blood, causing me to be anemic (this was after I had been gluten-free for over a year and had nothing to do with gluten).

I am glad that you are going to get checked out. My ob/gyn ran every test under the sun when I was having this weird stuff going on.....came down to hormones. Hopefully yours is something as easily controlled.

[melmak5]

You women are so amazing, thank you all.

Short update...

I have enlarged and painful-when-palpated ovaries. I have a referral for an ultrasound, which hopefully I can get done next week.

Thank you for the push to take this seriously and get it checked out.

[wolfie]

You women are so amazing, thank you all.

Short update...

I have enlarged and painful-when-palpated ovaries. I have a referral for an ultrasound, which hopefully I can get done next week.

Thank you for the push to take this seriously and get it checked out.

Hope that everything turns out okay for you! Glad that you are getting it looked at.

[DElizabethE]

I am still in the recently-diagnosed-and-in-recovery phase of things and up until Saturday I was doing really well.

I became really sick Saturday, regurgitating food/water, broke out in red spots on my abdomen (NOT DH), sweating profusely, exhausted. Then Sunday I woke up in sharp stabbing pain in my lower abdomen and a small about of blood from my rectum.

Monday this continued, Tuesday it got worse and I spent 6.5 hours in the ER... they found no reason for me to be in pain.

A friend mentioned today, "have they checked you for endometriosis?"

I have been tested for almost everything possible in my abdomen, except my reproductive system.

There is a CHANCE that all of this hell might be from some cc on Friday night, but I want to cover all bases here (and be able to get up off the couch!)

My question to the ladies...

How do you distinguish between lower GI pain/troubles and those of your uterus. (I thought I was pretty good at all of this, but I am wondering if I am confusing the 2)

Many thanks in advance,

Kristina

(PS - feel free to pm me if you are more comfortable)

Hi Kristina,

The pain you're having almost sounds like what I went through. The only reason I ever got checked out in the first place was lower right abdominal pain. I was having pain everyday for at least 5 or 6 hours and started ER visits. I had ultrasounds, CAT scans, a laparoscopy etc. I was finally diagnosed with Celiac in Nov. Once I got my diet under control I thought the pain would go away...but it didn't. Starting around the time of ovulation it would go on for 2 weeks straight. I was in the ER monthly and was on vicodin and that didn't even touch the pain most times. They wouldn't believe me that it was my ovaries. I finally saw a GYN specialist and started monthly shots of Lupron, which basically put me into menopause and quieted my ovaries. I haven't had pain since the end of April. But I can only be on Lupron for 6 months because of permanent bone loss. Who knows what will happen after that.

So I had 2 separate issues that was causing my pain. It was so bad I don't know how I got through it and never want to have that again. I hope you're able to find the cause of your pain. Sometimes they can't see the endometriosis but it's there. Good luck.

Diane

[oceangirl]

I'm glad you have an appt. and wish for the best for you. Hope they can get to the bottom of it.

lisa

[jerseyangel]

You women are so amazing, thank you all.

Short update...

I have enlarged and painful-when-palpated ovaries. I have a referral for an ultrasound, which hopefully I can get done next week.

Thank you for the push to take this seriously and get it checked out.

I'm so glad that you're having this checked out. Best of luck, and please keep us posted

[Fiddle-Faddle]

One other thing comes to mind, and that is appendicitis.

In the last 6 months, I've run into more and more people--all women--who have had emergency appendectomies.

One of my friends was told for over a week that NOTHING WAS WRONG--and then her appendix actually burst, and they finally figured it out.

I don't know why appendicitis is suddenly more common than it used to be.

[jerseyangel]

Yes, if the pain is on the right side (it can start in the center, but moves to the lower right because the appendix is there), it's definately something to consider. Other signs of appendicitis are nausea and fever.

[melmak5]

I love this website and the people that frequent it!

They have ruled out my appendix as the cause of this 2x now. One with an ultrasound about 3 months ago, and then again this week in the ER (via blood work).

The pain is much more manageable today.

DElizabethE, it is amazing how doctors are so willing to chock any abdomen pain up to celiac. I have been on three different digestive muscle relaxants... no wonder none of them helped with the pain.

The NP that I saw said that the only way to diagnose endometriosis is with laproscopic surgery. But that usually the course of action is going on a hormone regiment.

As much as I don't like the idea of adding more things to my system, I am really hoping that this is something pretty easy to manage.

So I am thinking that even if they don't "find something" I am open to the idea of starting some hormones to see if that takes away the pain.

[paulsalz1]

Hello. I was researching this disease for my wife who may or may not have it. In regard to the female things that could be wrong (endometriosis, cysts on ovaries, etc.), my wife has had them all. Earlier this year, she had a blood vessel wrapped around her ovary, resulting in emergency surgery to remove that ovary before it burst. The doctors said that she still had a lot of endometriosis left inside of her. Long story short, 4 different surgeries to remove cysts, the ovary and finally we decided on a total hysterectomy, hoping that that would cure this pain.

On to the digestive tract. My wife's family has a history of irritable bowel which she believes that she has. She goes from one extreme to the other in regards to going to the bathroom and is generally miserable there. So, when not in pain from her female things, her belly causes her grief with either not going or going all the time.

We've seen three different GI doctors and five different GYN doctors and all of them basically shrug their shoulders and say "Boy, it's not this. It might be this. Take this really expensive medication and hope it gets better." Obviously, it hasn't. Anything you can think of for stomach pains, we've tried. (Amitza (?), fiber pills, colonoscopies (4-5 of those), etc.) Anything for the female pains too, we've tried. (Lupron, hormones, surgeries, pain medicine, etc.) The GYN doc recommended physical therapy, which she is doing now, thinking that the ligaments are not stretchy enough.

The one thing that we haven't thought about was this Celiac disease. So, the whole point of this long winded post is to find out, if you have Celiac disease, would the pain that my wife is experiencing be caused by this? I see most of the posts are asking the reverse, but I'm dying to know could this be the root problem of everything. The symptoms have been pain in her abdominal area that bounces around and either not going to the bathroom for long stretchs at a time or going 5+ times a day. No mention has been made of this by the GI docs of this docs and at this point we are willing to try just about anything.

Thanks for any help that you may have on this.

[gfmolly]

Paulsalz1

I sent you a pm in regards to your post.

[melmak5]

Paulsalz1,

Welcome.

I can only speak from my current abdominal experience... but I would say "maybe" because its pretty clear that there is more than one thing going on with my guts, so perhaps the same is true for your wife.

Prior to being diagnosed, it was the pain and 6-10x a day bathroom trips that prompted me to see a doctor. Its obvious now that perhaps not all the pain was coming from my intestines, but I know of at least one other person who has had ovarian cysts and celiac disease. I am NOT saying that they are connect, just that if you have different pains in the same general region, sometimes can be mistaken for the 1st diagnosis.

Is your wife open to the possibility of getting tested?

[melmak5]

UPDATE

My ultrasound today showed ruptured and existing ovarian cysts. The technician was amazingly kind and knowledgeable. She said the pain I had during the pelvic exam was most likely due to the pressure causing one of the cysts to burst and the pain I had in my lower abdomen (near the insides of my hips) is a common pain after one bursts, because it is where the fluid pools.

I have to go back to the doctors to have them "interpret the results" but I am pretty confident in the technician's skills.

My understanding is that the traditional course of action would be going on hormones to prevent ovulation, aka 'the pill.' Has anyone had absorption problems with medications while their intestines are healing?

PS - I did have a small amount of rectal bleeding after the ultrasound (the "wand" was placed vaginally and not associated with a BM). I am guess that whatever is still causing my bleeding was agitated and maybe is a fissure, but I have no pain, so I am still perplexed by that.

[melmak5]

1. Still awaiting the ultrasound pics to get to my doctor (they got lost somehow in the 2 miles between the two offices)

2. Saw my GI today for follow-up.

-says there is no reason for me to be bleeding rectally, still

-recommends 15 minute warm baths at night and anusol, with steroids to decrease any inflamation (although she admits she saw nothing on the colonoscopy, nor have 3 other doctors

-said that i might have a form of "irritable bowel disease" which would explain why I am still bloated and sometimes in pain

-recommends a half tablet of immodium daily for D

when i told her that i felt 100x better (no abdomen pain, able to eat a full meal, not burping/regurgitating and not physically exhausted) when i was on the antibiotics (course ended 2 weeks ago, was on for 10 days for bacterial overgrowth)

she said that the bacteria MIGHT have come back, it is not uncommon, but that its too soon to test and if I am still not feeling well in 6 weeks she would have me repeat the breath test

this is when I broke down and started crying

I told her I have to start a new job Monday and that I won't have sick time to take and its really hard to take, this whole "doing everything right on the diet and still not getting better"

she basically said she cannot "just put me back on antibiotics"

I don't know, I just kinda feel like she is grabbing at straws and really doesn't know what is going on.

I had this and last week off, my first vacation in almost 4 years and I spent it in the ER and at doctors appointments almost every day.

I am trying to be grateful that they are figuring things out bit by bit, but I really don't know. I am sleeping all the time and I cannot see how I am going to be able to start this new job if I need this much sleep.

I left my old job because I couldn't afford all of these damn doctors appointments and tests.

It will get better, I keep saying that, but right now I just can't quite see it.

[JNBunnie1]

I'm sorry you're having such a hard time with all this. I know what it's like to have doctors say they just don't know what to do for you. Have you ever considered taking probiotics, not antibiotics? See, the problem with antibiotics is that they kill indiscriminatley, so when the course is finished, both the bad AND the good bacteria are dead. Typically, bacterial overgrowth is due to a lack of beneficial bacteria, which usually keep the bad ones in check. So as soon as you're done with antibiotics, the bad ones come right back because there's nothing to inhibit them. This may seem like an unrelated question, but do you have any dairy intolerances?