Waiting to see if I have Celiac's Disease

[chell]

I've been sick to my stomach going on 5 months now. My family doctor changed my stomach medicine and when that didn't help she sent me to a Gastro. They did an Endoscopy last month and the biopsies came back normal. My followup with her was last week. During the visit we discussed how I was also having cramping, diarrhea & constipation. She was thinking maybe I have IBS. She decided to do some blood work and a colonoscopy to rule out anything else. Monday morning they called to say the test for Celiac's came back weakly positive.

I'm wondering if it was weak because I just came off of a round of prednisone for a sinus infection. For over 10 years now I've tested positive for an auto-immune disorder. At this point I want it to be Celiac's. I just want answers and something to treat and adjust to. I want to be able to know what do finally. I want to feel better. I'm so tired of feeling bad all the time. All these years I've never fit into a specific category. It would be great to finally fit somewhere. I know it will be difficult to adjust to this but at the same time it will feel wonderful to have answers.

Yesterday I had to have another Endo so they could biopsy my small intestines. Now it is time to hurry up and wait for the results. I'm just sitting and waiting.

I've already had to adjust my eating because I developed food allergies after I had my wisdom teeth taken out about 10 years ago. So adjusting foods again wouldn't be so bad I guess. I'll just miss the Cheddar Biscuits at Red Lobster and the bread at Longhorn the most.

Sorry to go on so long. I just needed somewhere to talk about it. I'm anxious. My poor husband has been so wonderful and supportive. When I had to do nothing but clear liquids for a day and a half he did it with me. He wouldn't eat anything around me. I would ask him to go to the store to get me something and ask him to please go get something to eat while he was out. I told him I needed him to keep food in him so he could keep his energy up to take care of me. He is so good to me! He even would drink the chicken broth with me. He's such a sweetie!

 

[lovemygoofy]

I hope you get the results you are looking for, Chell.


I'm also waiting on test results for stomach issues. I've been sick since January. To date I've lost almost 35lbs and I don't even know how many inches.

Monday I had another ultrasound done on my upper right abdomen and then Tuesday I had the worst test in the world done. It was called the Gastro Emptying test. I had to eat nasty radioactive eggs with toast and jam under 10 minutes and then have xrays taken for the next 5 hours. Fun fun. The poor army guy assigned to me kept asking if I was okay. I just looked and felt so sick. It's a wonder I didn't chuck on his boots. BLEH

I called to see if I could schedule a follow up appointment and it would be at least 3 weeks to see the GI. I'm hoping he calls before that.

Let's hope we both get answers and feel better soon

 

[chell]

Oh Tina I'm sorry you had to go through that. I hope you start feeling better real soon and get some answers soon.

I'd be happy to loose that much weight but not for those reasons. I've only lost 5 lbs. Over the years I've had this same stomach problem but it usually only lasted about 2 weeks. I kept thinking it was a bug that I would get here and there.

My next appointment is in December. But I'm hoping if it comes back positive she will see me sooner.

I really do hope you get some relief VERY soon.

 

[olena]

to both of you.

I've been following your saga on FB, Michelle. I know how frustrated you must be.

 

[Stitchnut]

I am sorry to hear that you are having so many health concerns. They tested my daughter last year for Celiac's and the test came back negative. She has a lot of food allergies and the some of the blood work showed markers for Celiac's. She is doing much better now. I really hope the doctors find the answers that you need to move forward with your life. Not knowing the why's I think is always the hardest part. Best wishes to you.

 

[chell]

to both of you.

I've been following your saga on FB, Michelle. I know how frustrated you must be.

Thank you! I'm sitting here alone with my thoughts right now and felt like I needed to get my thoughts out of my head. Now I'm wondering why I posted it here for the world to see. But oh well.

I'm just really, really anxious. I want an answer NOW. I know I have to be patient.

The cramping went away when I was cleaned out. Now that I've had food again the cramps are back. **sigh** I just want to feel good. It's been so long since I've felt good. Every day I just smile through the pain and discomfort. One day I just really want to feel GOOD. If I actually felt good I might feel like doing something to get some of this weight off of me too. Thanks for letting me whine.

 

[chell]

I am sorry to hear that you are having so many health concerns. They tested my daughter last year for Celiac's and the test came back negative. She has a lot of food allergies and the some of the blood work showed markers for Celiac's. She is doing much better now. I really hope the doctors find the answers that you need to move forward with your life. Not knowing the why's I think is always the hardest part. Best wishes to you.

Thank you! I hope your daughter is doing well with her food allergies. They can be such a pain to adjust to.

 

[Carl]

I feel for you. I just went through almost the same thing. I had anemia and they did the endo, then the colo and last they did a pillcam to check the small intestine. Instead of doing another endo, they just said that the pillcam showed damage to the cellia on the small intestine and diagnosed me with Celiac's Disease. I do have some good news for you. Disney has quite a few items to help you with gluten intolerance. I just returned and they have gluten free bread at the Plaza, gluten free rolls at the Coral Sea and several places have gluten free brownies.

 

[daughter_of_amid_chaos]

Celiac disease is easy to live with once you adjust your diet. it is a great feeling to finally know what is wrong with you.

Hope everything works out for you. If you have any specific questions, feel free to contact me.

 

[minniebeth]

Hugs to both of you, Michelle and Tina!
Hope you have a resolution soon so you can move forward however is best.

 

[donnajon]

Have you had a hida scan to check your gall bladder's functioning? DD9 had her gall bladder removed last year. She went through all the same tests you have and it took a second hida scan to show her gall bladder was functioning at 33% of what it should have been. No gall stones. The first scan came back normal.

 

[minniecarousel]

Ahhh....Chell, I hope you get some answers soon. That "unknown" is the pits, isn't it? Someone close to me has had some similar issues, with years of not knowing what's wrong. It's so frustrating for her.

Hang in there.

 

[chell]

Thanks everyone!

Donnajon my gallbladder was removed 4 years ago. I thought that was the reason I was having my "bathroom" problems. Apparently I shouldn't be having so many problems with the bathroom even with the gallbladder gone.

I was really hoping they would get the biopsy results back today since my procedure was so early yesterday. And I was hoping if it is positive that they will call to tell me instead of just sending the letter. I'm just ready for an answer. No, I'm not very patient.

 

[chell]

Ahhh....Chell, I hope you get some answers soon. That "unknown" is the pits, isn't it? Someone close to me has had some similar issues, with years of not knowing what's wrong. It's so frustrating for her.

Hang in there.

She still doesn't have any answers? Poor woman.

 

[daughter_of_amid_chaos]

my biopsies and tests were negative for 4 years before i tested positive The gene has to be triggered by something to activate a positive test result even if you have all the symptoms. we (family and doctors) were positive i had it but just could not figure out why everything was negative. I got my first ear infection ever at the age of 20 in January and the day after my 21st birthday in May i tested positive for celiacs.

 

[chell]

my biopsies and tests were negative for 4 years before i tested positive The gene has to be triggered by something to activate a positive test result even if you have all the symptoms. we (family and doctors) were positive i had it but just could not figure out why everything was negative. I got my first ear infection ever at the age of 20 in January and the day after my 21st birthday in May i tested positive for celiacs.

My blood test was a weak positive. I think since I had just taken prednisone that is what made it weak.

Did you have a difficult time adjusting to a new diet? Several years ago I developed an allergy to eggs so I've already had to adjust to that. There are so many things I miss from that. Ugh.

Thank you for being so helpful to me!

 

[MIGrandma]

I hope you get some answers soon.

I am self-diagnosed to have an intolerance or sensitivity to gluten.

I've had "bathroom issues" for 10 years, with the last 2 years being really bad. I was diagnosed with IBS, which is what they tell you that you have when they really don't know what's wrong with you.

So, I decided to go on a gluten-free diet for two weeks and just "see what happens." Within just a few days I was doing so much better! Instead of having diarrhea 4-6 times throughout the day, it was once, maybe twice in the early morning and some days I didn't "go" at all and even when I did "go" the "consistency" (sorry to be so gross!) was more like normal.

I started this diet on September 29th, so have been on it more than a month and the improvement has just been so great that I will keep to the diet.

I had a diabetic check-up on October 15th, and discussed what I was doing with my doctor. She said if it's working for me, that's great. But she never suggested I go through any testing to find out if it's really Celiac's. I don't have all of the celiac symptoms, so I feel that it's just an intolerance or sensitivity.

It's difficult, at first, to know what you can eat and what you can't (besides wheat, rye and barley are also culprits) but it gets easier.

I buy a lot of things from the health food store, and read labels religiously now.

There is a great website that might be helpful to you. It's www.celiac.com.

Good luck to you!

 

[daughter_of_amid_chaos]

the worst part about adjusting were the cravings. Now I am having new issues because I live in a city where everyone goes to bars and bars can be a scary place for a celiac.

 

[quentina]

Thank you! I'm sitting here alone with my thoughts right now and felt like I needed to get my thoughts out of my head. Now I'm wondering why I posted it here for the world to see. But oh well.

I'm just really, really anxious. I want an answer NOW. I know I have to be patient.

The cramping went away when I was cleaned out. Now that I've had food again the cramps are back. **sigh** I just want to feel good. It's been so long since I've felt good. Every day I just smile through the pain and discomfort. One day I just really want to feel GOOD. If I actually felt good I might feel like doing something to get some of this weight off of me too. Thanks for letting me whine.

Not sure if you had any surgery in the past however, my Mom had some similar issues. Whenever she ate, major cramps, illnesses. Hurt so bad she stopped eating. After numerous tests, she had what was to be lapersoptic surgery to see what was going on. They could not get the scope in and cut her. She was loaded with adhesions. They were wrapped around her stomach and if the stomach expanded (eating), it caused major pain.

So, fast forward a few years.....major surgery every 16 months or so, the adhesions grow quikly and they can't figure out a way to make them stop.

 

[chell]

Not sure if you had any surgery in the past however, my Mom had some similar issues. Whenever she ate, major cramps, illnesses. Hurt so bad she stopped eating. After numerous tests, she had what was to be lapersoptic surgery to see what was going on. They could not get the scope in and cut her. She was loaded with adhesions. They were wrapped around her stomach and if the stomach expanded (eating), it caused major pain.

So, fast forward a few years.....major surgery every 16 months or so, the adhesions grow quikly and they can't figure out a way to make them stop.

OH my! The only surgery I've had was laparoscopic to remove my gallbladder. Your poor mom. I hope they can figure something out for her soon and get her some relief.