I have symptoms, but GI appointment is 3 months away!

[JennyRB]

Hi,

I've had issues with chronic diarrhea (no blood) and cramps for the past 4-5 weeks and at the same time I've become lactose intolerant. I've never had an issue with dairy before, so this seems sudden. I went to a Patient First and they did basic blood work and urinalysis, but the results came back normal. They said they were checking for infection, anemia, etc. The doctor gave me something for the pain, suggested I take a probiotic, and keep a food journal, and then return in a week. I returned a week later and saw a different doctor who was dismissive and unfriendly. She glanced at my food journal and quickly jumped on board with my lactose intolerance suggestion. I told her Lactaid supplements didn't completely eliminate my symptoms, so I wondered if I was misinterpreting my food journal. She suggested that I do an elimination diet and see a GI specialist. I made an appointment with a GI specialist, but it's not until June 11th! Three months away! That was the earliest appointment I could get.

Over the past few days, I've noticed that I have less appetite and I think I've lost 4-5 lbs. this past week. Also, a few times I've had joint pain that I didn't have before. I've looked online to see what foods have gluten and compared it to my food journal. I do see a correlation with the timing of when I ate gluten and when I had diarrhea. I don't mean to get gross, but when I ate a spinach omelet with marble rye bread for breakfast one morning, I saw the spinach again three hours later and it looked like I never chewed it. I know I'm supposed to keep eating gluten until my official diagnosis, but I can't imagine dealing with these symptoms every day for the next three months. I know that if I stop eating gluten it'll affect my test results, so I'm not sure what to do. These symptoms are miserable. Can you give me some suggestions? It feels like a no-win situation.

Thanks!

[cyclinglady]

  On 2/26/2018 at 11:42 PM, JennyRB said:

Hi,

I've had issues with chronic diarrhea (no blood) and cramps for the past 4-5 weeks and at the same time I've become lactose intolerant. I've never had an issue with dairy before, so this seems sudden. I went to a Patient First and they did basic blood work and urinalysis, but the results came back normal. They said they were checking for infection, anemia, etc. The doctor gave me something for the pain, suggested I take a probiotic, and keep a food journal, and then return in a week. I returned a week later and saw a different doctor who was dismissive and unfriendly. She glanced at my food journal and quickly jumped on board with my lactose intolerance suggestion. I told her Lactaid supplements didn't completely eliminate my symptoms, so I wondered if I was misinterpreting my food journal. She suggested that I do an elimination diet and see a GI specialist. I made an appointment with a GI specialist, but it's not until June 11th! Three months away! That was the earliest appointment I could get.

Over the past few days, I've noticed that I have less appetite and I think I've lost 4-5 lbs. this past week. Also, a few times I've had joint pain that I didn't have before. I've looked online to see what foods have gluten and compared it to my food journal. I do see a correlation with the timing of when I ate gluten and when I had diarrhea. I don't mean to get gross, but when I ate a spinach omelet with marble rye bread for breakfast one morning, I saw the spinach again three hours later and it looked like I never chewed it. I know I'm supposed to keep eating gluten until my official diagnosis, but I can't imagine dealing with these symptoms every day for the next three months. I know that if I stop eating gluten it'll affect my test results, so I'm not sure what to do. These symptoms are miserable. Can you give me some suggestions? It feels like a no-win situation.

Thanks!

Expand Quote  

Welcome! 

Consider calling the GI’s office every few days for a cancellation or ask any PCP/GP for a celiac antibodies test now (any medical doctor can order one).  Learn more about the blood test:

Open Original Shared Link

[JennyRB]

  On 2/27/2018 at 2:12 AM, cyclinglady said:

Welcome! 

Consider calling the GI’s office every few days for a cancellation or ask any PCP/GP for a celiac antibodies test now (any medical doctor can order one).  Learn more about the blood test:

Open Original Shared Link

Expand Quote  

Thank you! A friend of mine referred me to his GI and I have an appointment in six days! I'm so relieved that I don't have to wait months. Now I'm worried about a misdiagnosis or it taking a long time to get diagnosed.

[cyclinglady]

Great!  In the meantime, keep eating gluten or you will get inaccurate test results and be in diagnostic limboland.    You can cut out dairy or experiment with lactose free or low foods (e.g. butter, yogurt, hard cheese, etc).  This might relieve symptoms a bit.  Whatever you do, keep eating gluten until all celiac testing is complete (and that may include an endoscopy!)  ask for the complete celiac panel, if possible.