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

"caliectasis" Of Right Kidney

Joni63

By Joni63
in Coping with Celiac Disease

Recommended Posts

Joni63 Collaborator
Joni63
Posted

I'm having a rough summer.

First in May I had an ovarian cyst burst, then an ER visit, several blood tests, a colonoscopy/endoscopy that diagnosed me with Celiac, 4 ultrasounds, and now my kidney had Caliectasis. I feel like I am just falling apart. I thought I was doing well - just started the gluten free diet 2 1/2 weeks ago and feel a lot better. Had to have a follow up ultrasound done of my right kidney this past Monday because it had Caliectasis. Now they are sending me back to a OBGYN? Why would they do that for a kidney problem?

I have no idea what this is or what it means. Did anyone every have "Caliectasis" of their kidney? What does it mean?

I can't seem to get a break. It's just one thing after another. I've been handling this ok until now but I just can't handle anything else at this point.

I can't even call until Monday because the Doctor isn't in. I could scream!

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

Celiac.com Sponsor (A8-M):


Guest j_mommy
Guest j_mommy
Posted

So I did some digging...looked im my med dictionary ect.

Definition is inflamation/dialation on the calix of the kidney......this can be due to blockage or infection. Such as kidney stones ect.

That's about all I can offer...hopefully others will be able to fill in more!

Good Luck!

melmak5 Contributor
melmak5
Posted

I don't know about the kidneys, but it seems pretty standard that 3 months after you have a ovarian cyst issue they want to re-check to make sure new ones aren't forming and old ones aren't getting bigger.

It is pretty unacceptable that they did not give you a reason. Its your body, demand information.

Thank goodness your body is responding well to being gluten free! Hopefully that will help give you some relief and you can get the rest of your organs to follow suit.

(I have a pretty similar summer of one system after another having problems. Hopefully the fall will be our season!)

2kids4me Contributor
2kids4me
Posted

Caliectasis is a dialation in the kidney plevis. It can be due tio iunfection or a kidney stone. The reason they might refer you back to a OB GYN is because a kideny infection can be due to an ascending urinary infection secondary to an infection related to the genital/urinary tract....or an issue with the genital tract.

In females - these parts are all related.

Sandy

The Lovebug Rookie
The Lovebug
Posted

Dear Bellyfat,

I can't offer any new information, but I just want to give you a big, virtual hug 'cause it sounds like you just need some plain, old fashioned tea and sympathy. We're here for you.

Sue

Joni63 Collaborator
Joni63
Posted
  • Author

Oh my. Thanks so much Sue. Your post brought tears to my eyes. I guess I'm going through one of the crappy stages that happens after I did the "I can handle this" stage. I always tackle problems head on and handle them fine and fall apart later.

I appreciate all the other help and ideas. I hope it's nothing serious. I have felt really lousy the past few days, but think it was related to my menstrual cycle. They are always bad for me. I'm really tired and am kind of disappointed because I felt so good at first on the gluten free diet. But I know I also pushed myself too hard trying to catch up on things I've let go the past couple of months because I was sleeping so much due to fatigue. I'm also trying to get better sleep during the night and not nap at all during the day so I can hopefully train my body to stay asleep all night. I've only slept maybe 10 or so times all night through in the past 9 years. That's wearing on me also. I guess once I was diagnosed Celiac and got on the diet I thought I was superwoman. Guess not!

Melmak, I did have a 2nd ultrasound of the cysts and it did change. Originally there were 3 on left ovary and 1 on the right, after a month I had 2 on the right and 1 on the left. She said we will wait 6 months and recheck, but they all looked like simple follicle cysts so hopefully no worry there. I've been following your posts and see you've been having problems also. Best of luck in getting yourself straightened out as quickly as possible. Bring on the 'Fall' season...

I'm not sure but I think there was a mixup about what office the kidney ultrasound results went to. My OBGYN is named Reilly and my Primary Care is Reilly-Lowe. I was surprised when I got a letter in from the OBGYN office that said I need to make an appointment when my family doctor ordered the ultrasound and told me she would send me to a kidney specialist if it didn't improve since the last kidney ultrasound 6 weeks ago. I will call both offices tomorrow and see what is going on. I was going to make an appointment to see her and it really surprised me when the letter came in the mail from the other office. Worrying has become my new favorite past time with all these health issues going on. Seems it's never ending right now.

Thanks for the support. I want to give you all 'big hugs' back. Glad we have each other cause I know most of the people in my life aren't understanding this at all right now.

The Lovebug Rookie
The Lovebug
Posted
I'm also trying to get better sleep during the night and not nap at all during the day so I can hopefully train my body to stay asleep all night. I've only slept maybe 10 or so times all night through in the past 9 years.

Bellyfat,

For what it's worth, I've found a sure-found formula for good sleep. First of all, I take an Excedrin P.M. at bedtime, then I put ear plugs in my ears and a sleep mask over my eyes. Other than a trip or two to the potty, I sleep like a baby. ;)

I agree that if you sleep well you're so much better able to deal with what life throws your way the next day. Hang in there, kiddo!

Sue

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

Celiac.com Sponsor (A8-M):


Joni63 Collaborator
Joni63
Posted
  • Author
Bellyfat,

For what it's worth, I've found a sure-found formula for good sleep. First of all, I take an Excedrin P.M. at bedtime, then I put ear plugs in my ears and a sleep mask over my eyes. Other than a trip or two to the potty, I sleep like a baby. ;)

I agree that if you sleep well you're so much better able to deal with what life throws your way the next day. Hang in there, kiddo!

Sue

Funny you mentioned the sleep mask. I just bought one of those and used it about 5 nights but thought it was hard to get used to so I stopped using it. I also have ear plugs I could try. Did it take you a long time to get used having the ear plugs in and the eye mask on?

I also have something the Doctor gave me I haven't tried yet - it's called zolpidem tartrate (generic for ambien). I just hate to take meds if I can solve the problem the 'natural' way. But so far I've been unsuccessful with cutting caffeine, the mask, a light therapy light, etc.

The good news is I called my Doctor and my ultrasound of the kidneys all came back normal. Yeah! I also have a call into the OBGYN to see why they sent me the letter. It can't be anything too serious as my primary already went over the results of those with me and she said we should just do another ultrasound in 6 months to monitor them. So for now, I think I'm ok. :)

The Lovebug Rookie
The Lovebug
Posted

Bellyfat,

Good news on the kidney-thing. Glad to hear you are ok, after all.

Re the sleep mask: I does take a little getting used to, but I can't sleep without mine now. I invested in one made by Tempur-pedic so it's a lightweight foam than molds to the contours of your face (Brookstone and similar places carry them). It completely blocks out light, which allows your pineal gland to produce melatonin, which induces sleep. I swear by it. The earplugs are another thing I can't do without. They probably do take a little getting used to (I've used them for so long, I've forgotton). They were a godsend when I thought my husband and I might have to sleep in separate bedrooms because of his snoring. They don't completely eliminate noise, but they lower the decibels considerably.

Hope this helps.

Sue

Joni63 Collaborator
Joni63
Posted
  • Author
Bellyfat,

Good news on the kidney-thing. Glad to hear you are ok, after all.

Re the sleep mask: I does take a little getting used to, but I can't sleep without mine now. I invested in one made by Tempur-pedic so it's a lightweight foam than molds to the contours of your face (Brookstone and similar places carry them). It completely blocks out light, which allows your pineal gland to produce melatonin, which induces sleep. I swear by it. The earplugs are another thing I can't do without. They probably do take a little getting used to (I've used them for so long, I've forgotton). They were a godsend when I thought my husband and I might have to sleep in separate bedrooms because of his snoring. They don't completely eliminate noise, but they lower the decibels considerably.

Hope this helps.

Sue

Yes, it was great news - thank you!

I tried the mask and earplugs last night. I ended up taking out the earplugs very early in the morning. I will keep trying, maybe give it a month or so. I also bought an Inspiration Light Therapy LED Lamp that I'll also try. Maybe that will help.

Has anyone ever used one for sleep problems or depression? DId it work?

This pattern of waking up 2-3am has been going on a very long time, guess I can't expect it to resolve in a week. I just want to try natural remedies before I start using the sleep medicines. From what I've read taking supplements like melatonin only trick your body into thinking it's working correctly, but doesn't actually help correct the problem.

Joni63 Collaborator
Joni63
Posted
  • Author

FInally got hold of the OBGYN office today! I am sooooooooo mad at them. I left 2 messages last week, one on Monday morning and one Tuesday evening. No one called me back so this mornig I called and the receptionist said she left them the messages, but they could be busy. Uh, sorry that's not a good answer. I went off telling her that I NEED to talk to the Nurse Practitioner about the letter their office sent me and it Has to be today!

Long story short, the NP called me back within 1/2 hour and reviewed my bloodword that I had done and my CA 125 test is elevated. She's sending me the paperwork to go back and have the same tests done again and I am making an appointment with the OBGYN. I told her I just got diagnosed with Celiac and she said that could cause the CA 125 test to elevate due to the inflammation in the intestines. I also had the ultrasound of my kidney during the same time and that was showing the calectasis or inflammation.

I read up on the CA 125 and saw their is a lot of false positives, especially in women of premenapausal age. I'm trying to think positive about this, but I do have a couple cysts on my ovaries. Ovarian Cancer scares the crap out of me - I had a friend die at age 28 from it and she left behind two children ages 3 and 5 at the time. Ever since I saw what she went through and the rapid changes that Ovarian Cancer can cause it is just so frightening to me.

Please pray for me that this is just another obstacle I'm going through and I will come out of it fine!

I have been so healthy up until this past May when everything seems to have gone totally wacky on me.

Thanks for all your support and help, just knowing someone is here for me makes a huge difference!

The Lovebug Rookie
The Lovebug
Posted

I'm sending positive vibes your way, Bellyfat. Keep us posted.

Sue

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.