Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

JennyRB

Recommended Posts

JennyRB Newbie
JennyRB
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, 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!

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 Newbie
JennyRB
Posted
  • Author
19 hours ago, 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

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 Grand Master
cyclinglady
Posted

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.  

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,438
    • Most Online (within 30 mins)
      7,748
    rednecksurfer
    Newest Member
    rednecksurfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.