Problems Galore, Doctors Opinions & Finding The Problem

[Emirii]

Hello, I'm new here. I know that there are a bunch of threads like this on the form right now... But I wanted to tell my story and get other's opinions like everyone else. I will be sure to check back for responses and contribute unlike some here however...

 

I am 24, Female, and I've had depression and anxiety for a long time (around puberty I would guess). I never had many health problems aside from Athsma, Allergies and headaches for a short period of time sometime around age 14. I was overweight most of my highschool years but never really had any pains or such other than crushing depression. When I was 18 my mom died suddenly in a motorcycle accident and I was left with PTSD (non-feeling empathy, panic, hard time driving around, etc.). When I was 19 I had terrible stomach pains and had to go to the ER, and I had gallstones and had my gallbladder removed. After I had my gallbladder removed for an entire year I had not one solid stool, and when I would pass stool (sometimes right after I ate) it would stink so much it would burn your eyeballs and nostrils), this never really went away but now I do pass solid stools rarely. When I was 21 I decided It was time to loose some weight (I was 190 lbs, 5' 2") so I joined a gym and lost 30 lbs. I've been 160 ever since, with -/+ 5 lbs difference for 3 years now. Seems to pack on more around the holidays.

 

So here I am, the past year I have been back and fourth to my PCP with follow ups regarding a lot of bloating, my bowel movement habits (last year I had a friend convince me that it just WAS NOT "normal")... Bloating and diarrhea was top of my priority list, but I had noticed around last year that it was getting more and more difficult for me to exercise, I even had an easier time exercising when i was 30lbs heavier! My PCP gave me many home remedies, hemorrhoid medication and more but nothing helped at all. As the year progressed it was also harder and harder for me to complete even 15 minutes of vigorous exercise! What happens when I exercise is I get fatigued very very quickly, and as soon as I stop moving or doing whatever my eyes go black and I hear muffled sounds and have an outstanding urge to lay down wherever I am, even if it's dirt! Now lately since probably March or April, at work I have been distracted and very tired, as If I even wake up tired. I get so tired now I'm dizzy. Last week I kept getting the sensation i was on a BOAT sitting at my DESK!! It was so odd.

 

He refereed me to a Heart Doctor and a Gastric doctor 2 months ago, and I've finally got around to see them. I saw the heart doctor first and he did a stress test and an ultrasound of my heart and found something very interesting which I haven't found anything mentioned on this forum yet... As soon as I could not take anymore on the treadmill, i stopped and instantly collapsed onto the floor. My eyes went black and my hearing went away, and my legs burned a fire of a thousand suns!!! The nurse and doctor were hovering over me panicking and I barely heard what they were talking about, but once I recovered he said that I had some "rare" thing that he doesn't see called Post-Exercise Hypotension. My blood pressure drops significantly RIGHT AFTER i stop doing what I'm doing in other words. I'm really not sure if this is a bunch of hoopla or what, I don't believe it but it explains blacking out! My heart turned out to be completely normal. For reference, when I walked into the office my BP was 119/84 and the lowest it got during the test was 89/55 and took about 45 minutes to return to a low of 95/60 before I was able to walk around again. After that he sent me on my merry way with the advice to not run/do stuff extreme and to eat a lot of salt and a lot of water, which I've been doing the past 4 weeks and no improvement.

 

Just Thursday I visited the Gastro doctor and he only saw me for a total of maybe 5 minutes. I only got to list about half of my symptoms before he interrupted me and had me laying on the table feeling my tummy. He pulled me into his fancy office he had and immediately recommended I have a bloodtest done and a endoscopy. I felt pretty rushed at this and confused, as I didnt even get to tell him all of my symptoms. I feel like he might be rushing but I guess you gotta start somewhere. He asked if anyone in my family had Celiac and I said no, because I really had no idea. My mom died before I could ask/understand to ask her anything like this so who knows. My dad doesn't remember anything either. He said that Chrohns Disease and Ulceritive Colitus was not out of the question but he wanted to look at Celiac first. So my insurance is going to charge me $800 for the endoscopy alone, not including the anesthesia and stuff, and I just got the blood test done today. I have no idea when the results come in. I don't know if its just rushed or If I should go along with the endoscopy. I really want this bloating and  EVERYTHING just to go away, and feel my usual happy self again...

 

So here's a short list:

• One day I can have diarrhea, then not go to the restroom for 2-5 day, then diarrhea again. I get a glory period of probably 1-2 months where I have simi normal bowel movements for a week-ish (but not hard and cracky looking, smooth and skinny)
• Blood in stool probably once every 1-2 months (most definitely not my period). Ive noticed this to be true when I get simi-normal bowel movement, not during diarrhea.
• Sometimes a ton of mucus comes out with my diarrhea
• Terrible bloating to the point i feel my skin stretching. Ive never been pregnant but i'm pretty sure that's what it feels like
• Terrible gas and diarrhea that will burn your eyeballs and cause everyone you know and love to evacuate the entire building
• Problems swallowing, stomach feels like it's filled with acid but Tums and stuff does not do ANYTHING
• Terrible pain in stomach right under rib cage/diaphragm sometimes, hurts to even breathe.
• Sharp pains in lower abdomen that shoot down leg (Had ovaries checked with gyn, nothing wrong with my female stuff)
• Can't exercise to do blood pressure falling to the point of eye blackening/temporary deafness
• Tried dieting but nothing helped, except with the initial weight loss.
• Last 3 months have been filled with very very tired spells and so tired I am dizzy and disoriented (I probably should not be driving..)

 

When he said Celiac disease I had no idea what it was. I looked it up and that's how i found this forum. Take no offense but I thought all this gluten free business was a big fad that was just "all in your head". As I research it more I realize it is a real problem and that everything aside from the auto-immune symptoms match what I have. Note that I never get sick, I have healthy skin, hair and nails (really really oily skin and hair though....) Now my fiancee is also saying all of my problems are now "all in my head" and it is making me feel terrible. We are about to get married in 6 months and I would rather not be bloated in a wedding dress if y'all know what I mean... It's really frustrating. He even told me that If i did come down with the disease that he would not change diets with me.

 

Holy smokes I'm so sorry this turned out to be so long... maybe I will print it out and give it to my doctors haha. Thanks in advance for reading.

[beth01]

Based on your stomach symptoms alone I would bet you have celiac.  I would also suggest getting your thyroid checked.  I had a lot of dizziness and tiredness when my thyroid took a digger.

 

If you are worried about the endoscopy, wait until you get your lab results to see what they say.  Is the 800 dollars just out of pocket expenses for you or is your insurance not covering the test since they don't think it is needed?  If your labs come back suspicious of celiac I can't see your insurance company not covering it.

 

I am rather worried about your support structure.  This disease takes a toll on you not only physically but emotionally.  You need people that are going to support you, not having someone tell you how you feel is all in your head. Celiac is a life long disease that isn't magically going to go away.  This is where "  in sickness and in health" comes into play. 

 

My piece of advise would be to research as much now as you can so it isn't so much of a shock later on if it is Celiac.  Getting 100% gluten free is the only way to stop the damage and getting to feeling better.  Keep eating gluten now until you decide about the endoscopy, you might not get a clear picture of the damage if the healing has already begun. I think most labs take about a week to get the results back so hopefully you know by next Friday. I am also sorry you felt rushed in your GI appointment.  Sounds like he is already pointing in this direction and probably had read your referral notes from your doctor.  I know a lot of doctors that don't take a full medical history on referrals just because they think someone already has.  If you ask me they should have to on every new patient even if it is a referral. If he treats you the same way after a diagnosis and you don't feel comfortable with him, ask for a new doctor.  If it is Celiac you are going to need really good follow up care and you want to be comfortable with the doctor that is going to follow you.   We so often get pushed around from doctor to doctor and slip through the cracks.

[ravenwoodglass]

Sorry you are going through so much. It does sound like you may be celiac. If your blood tests come back positive it is really your decision whether to have the endo or not. Talk to your doctor about your concerns about the cost of the procedure. Doctors don't always know what a persons copay is or whether they have met their deductable. He may be willing to diagnose based on positive blood work and response to the diet. 

I also am concerned about the lack of support. It might be a good idea to get some premarital counseling. Having your doctor have a talk with him may also be helpful. It is possible your doctor might not have been rushing you in the appointment. He may have simply heard enough info from you that combined with your other doctor's records he was pretty certain that you have celiac. 

I hope you get clear answers from the blood test. Do remember that there can be false negatives in testing and that you should give the diet a good strict try when all celiac related testing is finished. 

[GF Lover]

Hello, I'm new here. I know that there are a bunch of threads like this on the form right now... But I wanted to tell my story and get other's opinions like everyone else. I will be sure to check back for responses and contribute unlike some here however...

 

I am 24, Female, and I've had depression and anxiety for a long time (around puberty I would guess). I never had many health problems aside from Athsma, Allergies and headaches for a short period of time sometime around age 14. I was overweight most of my highschool years but never really had any pains or such other than crushing depression. When I was 18 my mom died suddenly in a motorcycle accident and I was left with PTSD (non-feeling empathy, panic, hard time driving around, etc.). When I was 19 I had terrible stomach pains and had to go to the ER, and I had gallstones and had my gallbladder removed. After I had my gallbladder removed for an entire year I had not one solid stool, and when I would pass stool (sometimes right after I ate) it would stink so much it would burn your eyeballs and nostrils), this never really went away but now I do pass solid stools rarely. When I was 21 I decided It was time to loose some weight (I was 190 lbs, 5' 2") so I joined a gym and lost 30 lbs. I've been 160 ever since, with -/+ 5 lbs difference for 3 years now. Seems to pack on more around the holidays.

 

So here I am, the past year I have been back and fourth to my PCP with follow ups regarding a lot of bloating, my bowel movement habits (last year I had a friend convince me that it just WAS NOT "normal")... Bloating and diarrhea was top of my priority list, but I had noticed around last year that it was getting more and more difficult for me to exercise, I even had an easier time exercising when i was 30lbs heavier! My PCP gave me many home remedies, hemorrhoid medication and more but nothing helped at all. As the year progressed it was also harder and harder for me to complete even 15 minutes of vigorous exercise! What happens when I exercise is I get fatigued very very quickly, and as soon as I stop moving or doing whatever my eyes go black and I hear muffled sounds and have an outstanding urge to lay down wherever I am, even if it's dirt! Now lately since probably March or April, at work I have been distracted and very tired, as If I even wake up tired. I get so tired now I'm dizzy. Last week I kept getting the sensation i was on a BOAT sitting at my DESK!! It was so odd.

 

He refereed me to a Heart Doctor and a Gastric doctor 2 months ago, and I've finally got around to see them. I saw the heart doctor first and he did a stress test and an ultrasound of my heart and found something very interesting which I haven't found anything mentioned on this forum yet... As soon as I could not take anymore on the treadmill, i stopped and instantly collapsed onto the floor. My eyes went black and my hearing went away, and my legs burned a fire of a thousand suns!!! The nurse and doctor were hovering over me panicking and I barely heard what they were talking about, but once I recovered he said that I had some "rare" thing that he doesn't see called Post-Exercise Hypotension. My blood pressure drops significantly RIGHT AFTER i stop doing what I'm doing in other words. I'm really not sure if this is a bunch of hoopla or what, I don't believe it but it explains blacking out! My heart turned out to be completely normal. For reference, when I walked into the office my BP was 119/84 and the lowest it got during the test was 89/55 and took about 45 minutes to return to a low of 95/60 before I was able to walk around again. After that he sent me on my merry way with the advice to not run/do stuff extreme and to eat a lot of salt and a lot of water, which I've been doing the past 4 weeks and no improvement.

 

Just Thursday I visited the Gastro doctor and he only saw me for a total of maybe 5 minutes. I only got to list about half of my symptoms before he interrupted me and had me laying on the table feeling my tummy. He pulled me into his fancy office he had and immediately recommended I have a bloodtest done and a endoscopy. I felt pretty rushed at this and confused, as I didnt even get to tell him all of my symptoms. I feel like he might be rushing but I guess you gotta start somewhere. He asked if anyone in my family had Celiac and I said no, because I really had no idea. My mom died before I could ask/understand to ask her anything like this so who knows. My dad doesn't remember anything either. He said that Chrohns Disease and Ulceritive Colitus was not out of the question but he wanted to look at Celiac first. So my insurance is going to charge me $800 for the endoscopy alone, not including the anesthesia and stuff, and I just got the blood test done today. I have no idea when the results come in. I don't know if its just rushed or If I should go along with the endoscopy. I really want this bloating and  EVERYTHING just to go away, and feel my usual happy self again...

 

So here's a short list:

• One day I can have diarrhea, then not go to the restroom for 2-5 day, then diarrhea again. I get a glory period of probably 1-2 months where I have simi normal bowel movements for a week-ish (but not hard and cracky looking, smooth and skinny)
• Blood in stool probably once every 1-2 months (most definitely not my period). Ive noticed this to be true when I get simi-normal bowel movement, not during diarrhea.
• Sometimes a ton of mucus comes out with my diarrhea
• Terrible bloating to the point i feel my skin stretching. Ive never been pregnant but i'm pretty sure that's what it feels like
• Terrible gas and diarrhea that will burn your eyeballs and cause everyone you know and love to evacuate the entire building
• Problems swallowing, stomach feels like it's filled with acid but Tums and stuff does not do ANYTHING
• Terrible pain in stomach right under rib cage/diaphragm sometimes, hurts to even breathe.
• Sharp pains in lower abdomen that shoot down leg (Had ovaries checked with gyn, nothing wrong with my female stuff)
• Can't exercise to do blood pressure falling to the point of eye blackening/temporary deafness
• Tried dieting but nothing helped, except with the initial weight loss.
• Last 3 months have been filled with very very tired spells and so tired I am dizzy and disoriented (I probably should not be driving..)

 

When he said Celiac disease I had no idea what it was. I looked it up and that's how i found this forum. Take no offense but I thought all this gluten free business was a big fad that was just "all in your head". As I research it more I realize it is a real problem and that everything aside from the auto-immune symptoms match what I have. Note that I never get sick, I have healthy skin, hair and nails (really really oily skin and hair though....) Now my fiancee is also saying all of my problems are now "all in my head" and it is making me feel terrible. We are about to get married in 6 months and I would rather not be bloated in a wedding dress if y'all know what I mean... It's really frustrating. He even told me that If i did come down with the disease that he would not change diets with me.

 

Holy smokes I'm so sorry this turned out to be so long... maybe I will print it out and give it to my doctors haha. Thanks in advance for reading.

 

Hi Emiril and Welcome.

 

I'm terribly sorry to hear you lost your Mother so young.  As you might have read, Celiac can be triggered by traumatic events in our lives.  It is interesting that your GI mentioned Celiac right off the bat.  Many GI's are still very uninformed about the disease and I think that may be a good sign for you.  I also think that regardless of the test results you may still want to get the endoscope done.  You mentioned that you have trouble swallowing and lots of acid and blood in stool etc.  There are many additional issues that could be going on in your esophagus, stomach and intestines that may need separate medical intervention.  Of course, this is my opinion only.  

 

As mentioned above, spousal support is key to managing any health issues.  Celiac, for one, is a life long commitment to a Gluten Free life style.  If children are in your future, your fiance' should know that Celiac can cause miscarriages in un-treated/mis-treated Celiacs.  This is not only a life long change in how you eat but it is also a lifelong change in how he lives.  If you do test positive for Celiac than you would both have to be in agreement and committed to how you run your kitchen (shared or not), dining out and everything to do with food.  

 

Be sure to post your testing results so we can possibly help you through this process.

 

Colleen

[Emirii]

Thanks a bunch for all the replies! I had sat down and talked with him for a while and he just doesn't want to believe anything is wrong with me because I'm young, so it's his own way of coping. He says a lot of off-key stuff but that's just how we are together (joking, etc) but stuff can go too far especially with this, seeing as I've been dealing with it for a long time and it's a very sensitive matter for me. If I do get an actual diagnosis we are going to have to do a bunch of research and I don't have much of a doubt he will at least try to support me. I realize he's going to want a hamburger (his favorite foods) and stuff every once in a while, I think he thought that he would never be able to eat that stuff again and only eat raw salad haha. I don't think he knows what it is entirely. His mom especially, since she thinks even my bloodpressure problem is complete bogus. But that's another issue entirely LOL!

 

I'm also glad that my local grocery store has a whole isle dedicated to gluten free goodies (they are pretty expensive though!!) so If i do come out positive, I will be visiting here a lot more often to get good recipies that even he will enjoy! Did i mention he's also a picky eater??

 

It does seem like the loss of my mom is the turning point of all of my gastric issues. I just have to have confidence in my Dr for now to go through the diagnostic phases. The $800 is part of my $1000 copay so at least all of the small things such as anesthesia and stuff will be covered at least, but it's a lot of pocket change!

 

Thanks so much for reading and I know I can be suuuper wordy! haha

[kareng]

I am just going to comment on the gluten-free food issue - there is no reason a hub can't have gluten. He needs to be careful in the home and brush & floss well before kissing you.

Many foods are naturally gluten-free, so they don't need to cost more. Chili, BBQ, veggies, fruit, meats, beans, etc. Basically, it's baked goods and pasta that are an issue. So, you don't have to have a lot of these gluten-free breads, cookies, etc. you may find, like I did, that your hub likes some of the gluten-free crackers or your homemade gluten-free cookies. My hub prefers certain pastas but he doesn't know its gluten-free. I have fixed gluten-free lasagna and no one every complains.

We have a newbie thread you might want to look at. Also, a what's for dinner thread - gives you some ideas of what we eat and the folks on there are happy to discuss your menu or lack of a menu.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/page-562#entry919340

[Emirii]

Thanks again for the responses guys, I got my blood test in today with all negative results. He said they were "quite perfectly normal". He is still going to continue with the endoscopy however.

 

I finally mentioned to him the hot and itchy face/forearms problem to him and he is now having me rush order a pee test for Carcenoid Tumors!

 

Just wanted to post back here. The Carcenoid Tumor, unfortunately as i research are closer to my symptoms. I don't think I would have bad stomach problems just from eating an apple and such, and I don't have any deficiency  and I do'nt get worst from eating bread or anything.

[nvsmom]

Thanks again for the responses guys, I got my blood test in today with all negative results. He said they were "quite perfectly normal". He is still going to continue with the endoscopy however.

 

I finally mentioned to him the hot and itchy face/forearms problem to him and he is now having me rush order a pee test for Carcenoid Tumors!

 

Just wanted to post back here. The Carcenoid Tumor, unfortunately as i research are closer to my symptoms. I don't think I would have bad stomach problems just from eating an apple and such, and I don't have any deficiency  and I do'nt get worst from eating bread or anything.

 

Are you still going to try the biopsy, or at the very least try the diet for 3 or more months?  I get flushed face and neck (roseacea) and raw apples give me a terrible stomach ache. I also have problems with hypotension but mine is postural - if I stand up quickly I lose my vision almost every time (until I started taking florinef) and I had no vitamin deficiencies (borderline with vit A). I mention this because it could still be celiac disease as the tests can have false negatives - it is not necessarily that worst case scenario.

 

Best wishes to you.  Let us know how it goes for you.

[Emirii]

I will most definitely go through with endoscopy and biopsy and go from there. If they end up just diagnosing me with IBS if everything else come back negative, I will probably try it! But I have heard many people who are diagnosed with IBS are soon forgotten and then something terrible ends up being wrong with them :/ So when it comes to that, I'd be willing to try anything!

 

Interesting about the apples. I know apples upset empty stomachs sometimes even in normal people lol, but apples give me pretty bad stomach cramps sometimes!

[nvsmom]

Someone around here said IBS is doctor-ese for "I Be Stumped".  

 

Apples gave me the same raw stomach pain that gluten would sometimes do; it was difficult to stand up straight and not grimace.... it's weird what can bother some people!

[nora-n]

On one of the forums I am on, there are two with lack of the enzyme to break down fructose. That causes a lot of gas and intestinal symptoms. it usually takes several years before a doctor tests for that.

 

And several on th forums have non-celiac gluten sensitivity, for which there are no tests. It is probably an intolerance to some complicated starches in wheat, or some mast cell issue where the body reacts directly to wheat and other things. No useful tests except elimination tests.

 

Nora