Help!

[Cheryl Gottler]

Had a colonoscopy and a gastroscopy with biopsies.  The doctors notes were. The duodenal mucosa demonstrated some mild inflammatory changes and the villi were not as well defined. I suspected she has celiac disease.  The duodenal biopsy said small intestinal mucosa with preserved villous architecture.  No increase in intraepithelial lymphocytosis.  Negative for parasitic organisms, dysplasia and malignancy.  I got them at our clinic to e-mail me my results.  I can't get into see a doctor for another week.  Of course this is my health and really want to understand that yes this is Celiac disease.  Any help would be greatly appreciated it is also a month before I can see a dietitian.  

[cyclinglady]

2 hours ago, Cheryl Gottler said:

Had a colonoscopy and a gastroscopy with biopsies.  The doctors notes were. The duodenal mucosa demonstrated some mild inflammatory changes and the villi were not as well defined. I suspected she has celiac disease.  The duodenal biopsy said small intestinal mucosa with preserved villous architecture.  No increase in intraepithelial lymphocytosis.  Negative for parasitic organisms, dysplasia and malignancy.  I got them at our clinic to e-mail me my results.  I can't get into see a doctor for another week.  Of course this is my health and really want to understand that yes this is Celiac disease.  Any help would be greatly appreciated it is also a month before I can see a dietitian.  

Welcome!

I think you just need to be patient and discuss this with your doctor.  We can not diagnose you on the internet.   

[GFinDC]

CL is right, it's best to see the doctor when you can.  You should keep eating gluten for now though.  A small amount daily is all that's needed to keep the antibodies active.  Just in case further testing is needed.

The other part of a diagnosis is the blood antibody testing, called a celiac panel.  It includes several types of antibody tests that depend on the active immune response to be accurate.   So if you haven't had those antibody tests yet, or just had the screening antibody tests, the doctor might want to do the full panel now.  They really should do the full celiac panel so you have a record of what your antibody levels are now.  It's helpful to know that sometimes.  Especially for follow-up monitoring testing to see how you are doing on recovery.

Try to be patient if you can.  Some of us weren't born with the patient bone so it can be hard.  But in the meantime you can spend time reading on this web, including this forum to learn more about celiac disease and eating gluten-free.  And you can ask questions and we can try to help too.

While it's may be a big change if you have to go gluten-free, we are proof that it can be done.  And the result can be much improved health.

[Awol cast iron stomach]

Hello. My journey took a bit too. As the others point out patience often times is necessary. You want them to get this right and it may take time. I was misdiagnosed for 20 plus years as IBS by symptoms only. In 2016 when I finally met the Dr.  who was willing to do both scopes (endo and colon) it took 2 months to get in for my preliminary appointment. Then my gluten challenge and scopes occurred 5-6 months later. So there can be waitlists and time to get in. The Dr's have to do rule in, rule out, and in my case they often times the past diagnosis and records maybe misleading as well. For example my IBS , my asthma diagnosis etc which my Celiac/NCGS Dr & team later on had to sort through and check me for. So in closing no IBS was found or Asthma diagnosis was not supported in my diagnosis journey (they don't undiagnose you with these conditions) My team had to take time to sort through all the past pieces as well.

It's frustrating to wait  when you feel awful and want answers. However a symptom only 15 minute appointment/diagnosis is not typical for those of us on the forums. Those previous 15 minute symptom based only appointments often were wrong or only a snap shot of our actual condition. Many of us have a long history or falling through the cracks. As the above posters state we often see ourselves in these postings. It was amazing to me to find a few posters on here who symptoms and experiences matched my own. It can be overwhelming and yet the beginning of making peace with what has ailed you.

I wish you the best on your diagnostic journey path weather you are celiac/NCGS, clarity and wisdom for your diagnostic dr./team, and then healing and wellness ahead.

[Cheryl Gottler]

4 hours ago, Awol cast iron stomach said:

Hello. My journey took a bit too. As the others point out patience often times is necessary. You want them to get this right and it may take time. I was misdiagnosed for 20 plus years as IBS by symptoms only. In 2016 when I finally met the Dr.  who was willing to do both scopes (endo and colon) it took 2 months to get in for my preliminary appointment. Then my gluten challenge and scopes occurred 5-6 months later. So there can be waitlists and time to get in. The Dr's have to do rule in, rule out, and in my case they often times the past diagnosis and records maybe misleading as well. For example my IBS , my asthma diagnosis etc which my Celiac/NCGS Dr & team later on had to sort through and check me for. So in closing no IBS was found or Asthma diagnosis was not supported in my diagnosis journey (they don't undiagnose you with these conditions) My team had to take time to sort through all the past pieces as well.

It's frustrating to wait  when you feel awful and want answers. However a symptom only 15 minute appointment/diagnosis is not typical for those of us on the forums. Those previous 15 minute symptom based only appointments often were wrong or only a snap shot of our actual condition. Many of us have a long history or falling through the cracks. As the above posters state we often see ourselves in these postings. It was amazing to me to find a few posters on here who symptoms and experiences matched my own. It can be overwhelming and yet the beginning of making peace with what has ailed you.

I wish you the best on your diagnostic journey path weather you are celiac/NCGS, clarity and wisdom for your diagnostic dr./team, and then healing and wellness ahead.

 

4 hours ago, Awol cast iron stomach said:

Hello. My journey took a bit too. As the others point out patience often times is necessary. You want them to get this right and it may take time. I was misdiagnosed for 20 plus years as IBS by symptoms only. In 2016 when I finally met the Dr.  who was willing to do both scopes (endo and colon) it took 2 months to get in for my preliminary appointment. Then my gluten challenge and scopes occurred 5-6 months later. So there can be waitlists and time to get in. The Dr's have to do rule in, rule out, and in my case they often times the past diagnosis and records maybe misleading as well. For example my IBS , my asthma diagnosis etc which my Celiac/NCGS Dr & team later on had to sort through and check me for. So in closing no IBS was found or Asthma diagnosis was not supported in my diagnosis journey (they don't undiagnose you with these conditions) My team had to take time to sort through all the past pieces as well.

It's frustrating to wait  when you feel awful and want answers. However a symptom only 15 minute appointment/diagnosis is not typical for those of us on the forums. Those previous 15 minute symptom based only appointments often were wrong or only a snap shot of our actual condition. Many of us have a long history or falling through the cracks. As the above posters state we often see ourselves in these postings. It was amazing to me to find a few posters on here who symptoms and experiences matched my own. It can be overwhelming and yet the beginning of making peace with what has ailed you.

I wish you the best on your diagnostic journey path weather you are celiac/NCGS, clarity and wisdom for your diagnostic dr./team, and then healing and wellness ahead.

Thank you.  Yes for years now I thought I just had remission Ulercerative Colitis and the pain I felt when I ate and all the bowel issues was just something I had to deal with because of this.  It just got so hard everything made me sick I am happy I got a biopsy.  That was a 20 year ago diagnosis and with this biopsy he couldn't see any colitis. They couldn't even find my report from that many years ago.   Thank you for your response and yes I understand this will be something I will have to be patient with threw the process of doctors and healing.

[cyclinglady]

I hope it goes well for you and you get answers!  ?