Still Waiting On Gi Appointment, Really Struggling And Trying To Make Sense Of It All

[Mommabearof3]

My GI appointment is next week on the 14th.  So I'm obviously still eating gluten as much as I can tolerate, but it is quickly becoming an issue for me to force myself to eat foods that are making me feel sicker!  

 

We went out on Sunday, packed lunches in a cooler as it was an all day event.  I had a sandwich on a roll around 10 am.  By 10:30 I was laying down in the backseat of the car and slept for an hour.  It seriously felt like I had taken a sleeping pill, got dizzy and everything was going all fuzzy on me, dry mouth, and heartburn kicked in.  My husband woke me up after an hour because he was really worried.  Took another 30 minutes after that to feel sort of normal again.  Well, my normal I guess.  I was still off the rest of the day, had eaten a handful of wheat thins throughout the day because I love them .  After that, I stuck with just cold cuts, not bread, no mayo, straight out of the package.

 

The last time I felt like that was during my last pregnancy.  I had a pretty awful case of gestational diabetes (3rd pregnancy that I've had it with) and was on a pill medication to try to control sugars.  The drug didn't work well for me at all, it caused massive drops in sugar.  I almost crashed my car on my way to a OB appointment.  When I got there, I was nearly blacked out and my sugar was 46.  They wouldn't let me leave the office for 2 hours, made me eat food there to get it up, then sent me to the hospital and I was put on insulin that day.  I know its not my sugars now, I still have my glucose meter and I have checked it when I get these episodes.  My sugar is in the normal range at 1 and 2 hours after eating.

 

Yesterday I woke up with such severe stomach pain and diarrhea, I was actually contemplating a trip to the ER.  I refused to eat anything all day, I just couldn't take the thought of anything in my stomach.  I finally ate at dinner time and had a half of a pita bread with dinner.  That was the only gluten containing food I could force myself to eat, and I figured better at dinner time since I'd be going to bed within a few hours of it.

 

Today, no breakfast, no appetite.  Cramps were minimal and no repeated trips to the bathroom!  That's a good day for me.  Saw my ENT who said my ear issues (repeated ear infections - 8 in the last 3 years) are odd for an adult and thinks its related to allergies.  No offer to test for WHAT I'm allergic to, just a new prescription for a nasal allergy spray to add to my existing allergy meds and told to come back in 6 months or if I get another ear infection.  

 

Stopped with my kids for lunch and had a burger, with a bun and a couple of onion rings.  I am paying for it now  The fatigue hit when I was about 10 minutes from home.  We made it home safely, but I think I need to be more careful about eating trigger foods when I'm out, especially when I'm driving my kids around.   I'm sitting here with heartburn, the feeling like I have to go to the bathroom again, and I just want to go to bed.  I am dreading dinner - the kids wanted homemade pizza.  I'll eat mine later on, before bed time.

 

I'm just frustrated and sick.  I'm tired of being sick.  I've been sick off and on for so many years, had so much pain and cramping, fatigue, and everything else, and I just want to feel normal.  If I could, I would go total elimination diet starting right now, but I can't until I get the testing done.  ugh.

 

Liz

 

 

[nvsmom]

 Oh, that's tough.  I hope you can hang in there.

 

Remember, you only need 1-2 slices of bread (or equivalent) for 8-12 weeks before you test. If you have done a long gluten challenge (around the 3 months) you can probably get away with a 1/2 slice per day.  Don't overdo the gluten if you can help it.

 

Try to only eat you gluten in the evening, when your day is pretty much done.  Skip gluten during the day.  Just finish off the gluten in the house and start buying gluten-free.  Regardless of what the tests say, it sounds like you have non-celiac gluten sensitivity (NCGS) or celiac disease, and you'll need to be off gluten in 10 days.

 

Good luck!

[SMRI]

Can you call the dr and see if you can just get your labs done tomorrow so you can start backing off on the gluten?

[Mommabearof3]

 Oh, that's tough.  I hope you can hang in there.

 

Remember, you only need 1-2 slices of bread (or equivalent) for 8-12 weeks before you test. If you have done a long gluten challenge (around the 3 months) you can probably get away with a 1/2 slice per day.  Don't overdo the gluten if you can help it.

 

Try to only eat you gluten in the evening, when your day is pretty much done.  Skip gluten during the day.  Just finish off the gluten in the house and start buying gluten-free.  Regardless of what the tests say, it sounds like you have non-celiac gluten sensitivity (NCGS) or celiac disease, and you'll need to be off gluten in 10 days.

 

Good luck!

I'm definitely reacting to something.  Whether the tests come back positive or not, once the GI is done testing, I'm off of gluten ASAP to try to calm everything down.  I have reactions to a lot of environmental stuff (cats, dogs, pollen, mold, certain metals, insect bites leave giant welts and scars, certain dish soaps will cause my hands to crack and bleed, stuff like that)  and I have an intolerance to eggs, so I won't be surprised if gluten is now a big problem or has been for a long time without me knowing.  The more I read, the more it seems like its linked to soooooo many things I have experienced and its scary.

 

Can you call the dr and see if you can just get your labs done tomorrow so you can start backing off on the gluten?

My OBGYN wants them to schedule a colonoscopy and endoscope because of issues I have been having, so I won't go fully off of it until that is done.

 

I don't know if the two issues are related, and the OBGYN is reaching at this point because he can't explain whats going on with me because it should be impossible, but its still going on.  But if it convinces the GI to do the tests and everything then that is just more ammo for me to get it done.

 

I also am worried about my family being on board with it, as I am the main cook in the house for 6 people.  My husband isn't home for dinner most night because of his commute and he buys his meals out most work days, but our 4 kids are home for almost all meals and my father is here every Sunday for our big family dinner.  They love love love their bread and pasta and pizza and basically any carb they can get their hands on.  Its going to be a transition for all of us, as I can't always cook two separate meals and I am not too sure how I would prepare them something full of gluten.  Can you absorb it through your skin and react?  I'm clueless on any of that.  I guess I'll need separate cook ware, toaster oven, etc?

 

I am going to start backing off of it though, and eat the minimum amount needed at night until all testing is done.  I'm done for today though.  I had that lunch and I have not been able to eat since.  I still have heartburn 9 hours later!

 

Liz

[SMRI]

No, you can't absorb it through your skin, although some people do have a skin rash related to gluten/celiac.  Yes, a separate toaster is needed, cookware, maybe but probably not.  You just have to make sure you wash your cookware well.. maybe separate what you have to make it easier so "these" pans are gluten-free only.  It is easier if the house is gluten-free but you can just divide the kitchen and have a gluten-free area too.  If you are making pasta, just make it with gluten-free pasta instead of the other stuff.  Pizza is harder but you can get gluten-free crust mix if you make homemade pizza.  It's kind of hard to work with but it's not bad.  Most of what you probably eat, minus the bread and pasta is gluten-free already--most meat, veges, potatoes, etc.

 

It's ok to take Tums for the heartburn too!  I have to say, since I've been gluten-free--for all of a week now--ZERO heartburn!!

 

Are you scheduled for the endoscope and colonoscopy on the 14th or is this just and evaluation GI appt?

[Mommabearof3]

No, you can't absorb it through your skin, although some people do have a skin rash related to gluten/celiac.  Yes, a separate toaster is needed, cookware, maybe but probably not.  You just have to make sure you wash your cookware well.. maybe separate what you have to make it easier so "these" pans are gluten-free only.  It is easier if the house is gluten-free but you can just divide the kitchen and have a gluten-free area too.  If you are making pasta, just make it with gluten-free pasta instead of the other stuff.  Pizza is harder but you can get gluten-free crust mix if you make homemade pizza.  It's kind of hard to work with but it's not bad.  Most of what you probably eat, minus the bread and pasta is gluten-free already--most meat, veges, potatoes, etc.

 

It's ok to take Tums for the heartburn too!  I have to say, since I've been gluten-free--for all of a week now--ZERO heartburn!!

 

Are you scheduled for the endoscope and colonoscopy on the 14th or is this just and evaluation GI appt?

 

Thank you for the tips!  I have a lot to learn.  

 

Its only my initial evaluation.  I've had the appointment since end of spring, it takes months to get in with them, and I have to drive 2.5 hours to get there.  My GP was no help, I was having attacks pretty bad (after eating) and she thought it was my gallbladder and sent me for an ultrasound that was all clear.  When they came back all clear, she decided it was "acid reflux" and for me to stay on Prilosec indefinitely.  I didn't know acid reflux could cause debilitating stomach cramps and diarhea? (Total sarcasm there)  Not to mention, the prilosec does didly squat for me except cause me to get constipated, which makes everything a lot worse!  She offered no other testing.  Thankfully we have awesome insurance through my husband's job/union and I don't need referrals for specialists, so I found a doctor affiliated with the hospital I had my hysterectomy at since my OBGYN there is one of the best doctors I have ever been treated by.  Then I started having Gyn issues again, and when he recommended seeing a GI to rule stuff out, he was happy I had the appointment already and wouldn't have to wait longer.  

 

Liz

 

 

 

Liz

[SMRI]

That is a long time to have to wait to get into a dr!!!  Will they be able to do the scope right away?  I would call and find out what the procedure is for that.  If they can get you in that same day or the next day or if you are going to have to go back later.  Maybe they will put you on the schedule for that same day and just cancel if they don't think you need one--but I doubt they will say that.  You could go to your appointment ready for the endoscope (fasting) ??  If your Ob/GYN calls them and talks to them, chances are they will.

[Mommabearof3]

That is a long time to have to wait to get into a dr!!!  Will they be able to do the scope right away?  I would call and find out what the procedure is for that.  If they can get you in that same day or the next day or if you are going to have to go back later.  Maybe they will put you on the schedule for that same day and just cancel if they don't think you need one--but I doubt they will say that.  You could go to your appointment ready for the endoscope (fasting) ??  If your Ob/GYN calls them and talks to them, chances are they will.

 

My appointment isn't until 1:30 in the afternoon so I don't think they will do any type of testing that day.  Plus I need a colonoscopy as well, and I want to see if they are able to just do everything at the same time.  I do not react well to anesthesia, and would rather only be under once, not twice.  When I had my surgery last year I threw up for over 12 hours afterwards, despite 1 medication to prevent it and 3 different medications to stop it.   Also, I'm driving myself there, I'll need my husband or my father to drive the day of the procedures.

 

Not fun to have to wait, but it is what it is.  I''m a little more positive today, yesterday was just a rough day all around.

 

Liz

[beth01]

I hope you find your answer soon.

 

I have a gluten free home, my daughter and I are both Celiacs.  My live in boyfriend and my son are both gluten free at home but are allowed to eat gluten outside of the home.  I can't imagine a shared kitchen but many do it with no problems at all.  If I were you, I would do a test and make some gluten free food and not tell anyone.  Bob's Red Mill crust mix is my favorite so far out of the mixes that I have tried and if I didn't know any better, I wouldn't have thought it was different. Maybe if your family sees that gluten free doesn't mean tasteless, they would be more open to do a switch at home for you.  Also, it's hereditary so you might not be the only one in the household with celiac. 

 

If you are a big time cook, it's going to be a lot easier for you than someone who doesn't cook.  Substituting isn't that big of an issue so far for me, and I am only four months in.

 

Definitely read the newbie thread and learn about crosss contamination.  They are in the coping section of the forum.

 

Just a side note, I have many other allergies and intolerances both environmental and drug related and they seem to be getting better after going gluten free.  I often wonder if our bodies being so sensitive from all the gluten overload that all of our other allergies and intolerances aren't intensified just for that alone?  I am going to go and get my scratch testing done again for my environmental allergies and am kind of interested to see how they compare to before.  I was 4+ on everything they tested me for.

[Mommabearof3]

I meant to come back the other day to update you all but we had a very upsetting appointment Thursday with my daughter at the pediatric orthopedist. Her pediatrician had diagnosed her with suspected scoliosis and refered us, with a 7 degree curve. After x-rays at the ortho, it turns out she has a 25 degree curve in her thoracic spine that no one knew about and we are looking at an MRI at the pediatric hospital to rule out anything foreign causing it, such as a spinal tumor. She just turned 9 in June :-(

I've continued to eat gluten every day, and I am getting much worse. Last night we went to dinner with family and I had a turkey club. 45 minutes later I was in the bathroom with extremely bloody diarrhea and bad cramps.

My best friend wants me to go to the hospital, but I can't. I have such an immense fear of the er, the last time I went with severe pain they called me a drug addictest and put in my hospital notes that I was faking my pain. They completely missed that I had a uterine infection caused by the biopsies and ablation I had done a month earlier. I also had a rare complication from the ablation, it caused scar tissue that blocked any blood from coming out and it was backing up into my fallopian tubes and causing pain so excruciating that I was begging my husband to kill me. 1 month after that er trip I had a complete hysterectomy because of pre cancer cells, the failed ablation and severe bleeding. I spent that entire time in severe pain and on very strong painkillers looking for a new doctor and waiting for surgery. I ended up changing hospitals and going 2 hours away to find the OBGYN that had me in surgery within 2 weeks.

I'm afraid to go to the er. I don't think they'll help in any way, just refer me to see the GI, which I'm already doing on Thursday.

Liz

[beth01]

Liz - I am so sorry you are feeling this way. I hate to say it but I really think you do need to be seen.  You have to be firm with them.  If they treat you like a drug addict, tell them the story.  You are in the middle of a gluten challenge which is obviously making you very ill.  Make them treat you.  In May I had to force an ER doctor to admit me for further testing because I knew there was something wrong.  She was going to discharge me home and I said that I would just reregister as many times as I had to until they admitted me.  I had a stool impacted appendix taken out two days later. I also had a very low potassium and my hemoglobin had dropped a few grams in a week. The ER hadn't bothered to cross check my previous labs to even notice.  I had already been walking around for 5 months or more with chronic appendicitis. I have pretty much told my doctor that from here on out, if I have a concern I want it taken seriously.  I won't be pushed around anymore.

 

I am so sorry to hear about your daughter.  My niece just had a few major back surgeries for the same exact thing.  She missed a few months of school, but she is now caught up and is doing great!  No problems what so ever and she even grew a few inches.  I know it must be very scary but they have made so many advances in these surgeries.

 

Good luck to you and I hope you start feeling better.  If the bloody D keeps up, go to the doctor!!!!  Keep us posted.

[SMRI]

Very bloody stools are something to call your doctor about--"some" blood might be associated with gluten issues but very bloody is something you should go to the ER for.  Go to a better ER if you have to.

[Mommabearof3]

Thanks all. If it is still going on tomorrow I will go in to the ER associated with my OBGYN. It's part of the same system that the GI is part of as well. I'll have to have my best friend take me, my husband is at work until Tuesday night.

I still had D this morning with some blood, no where near as bad as last night, and am still not feeling right as far as my stomach is concerned - cramps, nausea, heartburn, all that fun stuff.

Beth01- I know how that feels, when they just won't listen. I'm so tired of having to fight for help, which is why I won't go near the local hospital for anything anymore, even blood work.

Thank you for telling me about your niece, I love positive stories. I know we are facing at least a number of years of bracing for the best case scenario.

Liz

[icelandgirl]

I meant to come back the other day to update you all but we had a very upsetting appointment Thursday with my daughter at the pediatric orthopedist. Her pediatrician had diagnosed her with suspected scoliosis and refered us, with a 7 degree curve. After x-rays at the ortho, it turns out she has a 25 degree curve in her thoracic spine that no one knew about and we are looking at an MRI at the pediatric hospital to rule out anything foreign causing it, such as a spinal tumor. She just turned 9 in June :-(

I've continued to eat gluten every day, and I am getting much worse. Last night we went to dinner with family and I had a turkey club. 45 minutes later I was in the bathroom with extremely bloody diarrhea and bad cramps.

My best friend wants me to go to the hospital, but I can't. I have such an immense fear of the er, the last time I went with severe pain they called me a drug addictest and put in my hospital notes that I was faking my pain. They completely missed that I had a uterine infection caused by the biopsies and ablation I had done a month earlier. I also had a rare complication from the ablation, it caused scar tissue that blocked any blood from coming out and it was backing up into my fallopian tubes and causing pain so excruciating that I was begging my husband to kill me. 1 month after that er trip I had a complete hysterectomy because of pre cancer cells, the failed ablation and severe bleeding. I spent that entire time in severe pain and on very strong painkillers looking for a new doctor and waiting for surgery. I ended up changing hospitals and going 2 hours away to find the OBGYN that had me in surgery within 2 weeks.

I'm afraid to go to the er. I don't think they'll help in any way, just refer me to see the GI, which I'm already doing on Thursday.

Liz

I just want to send you a huge (hug)...you are going through so much. Please hang I'm there and keep us posted. I also have a complete anxiety about Dr's and ERs so I hear you...but sometimes you have to go in. Please take care.

[Mommabearof3]

I just want to send you a huge (hug)...you are going through so much. Please hang I'm there and keep us posted. I also have a complete anxiety about Dr's and ERs so I hear you...but sometimes you have to go in. Please take care.

 

Thank you  I know sometimes you just have to go, but the anxiety I have about it is through the roof.  I'm fine with regular doctor appointments, it is just ER visits that I freak out about.  

 

The last three years have been really really really tough emotionally and physically. I would love to just have ONE thing come back with an easy fix.  I don't want Celiac Disease, but out of all the things that could be wrong, I'll take it since its the "easiest" to fix.  I hate medications, and would much rather have a diet controlled problem!

 

Liz 

[SMRI]

Did you end up going to the Dr or ER?  How are things today?

[Mommabearof3]

Did you end up going to the Dr or ER?  How are things today?

Thanks for checking on me.

 

I didn't have any more bleeding today so I didn't go to the ER.  I tried to call the GI office twice to see if they could get me in earlier due to the bleeding, but I held for over 20 minutes each time, and ended up giving up because no one picked up.  I had a lot of work to do today (I'm a real estate agent) and had phone calls coming in left and right so I couldn't hold indefinitely.  Unless the bleeding comes back I'll just wait till my appointment on Thursday.

 

Liz