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

Recommended Posts

Joni63 Collaborator

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

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

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

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

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

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
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
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

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
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

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

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

Sue

Archived

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

  • 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. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    yooperjb
    Newest Member
    yooperjb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.