Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Feel Like It's Always Something...so Frustrated!

icelandgirl

Recommended Posts

icelandgirl Proficient
icelandgirl
Posted

I am feeling so frustrated that I just want to cry. It really feels like it's always something and all I want is to feel good and be healthy so I can take care of my kids.

I've been gluten free since diagnosis on January 23rd. I am only eating whole foods that I prepare and I'm starting to feel like I'm getting the hang of this thing.

3 weeks ago I got a uti. Ugh. The doctor put me on an antibiotic...it cleared up. But 5 days later I was hit with the worst case of D since diagnosis. Watery...10 -20 times a day. Felt so awful. On the 4th day I went to see my doctor because I was getting dehydration and I was scared about c. Diff. He had me do stool samples and as of yesterday I ever heard nothing on those. The D went away thankfully...but 2 nights ago the uti symptoms start again. I spent all of yesterday drinking water and cranberry juice...hoping somehow to flush it out. But after waking up many times last night in pain I went in this morning and sure enough...I have another one. She put me on macrobid. Also...she's sending it off to be cultured to see what it is.

Anyway...I'm so tired of feeling bad! I can't believe I'm on antibiotics for the 3rd time this year...I had to take them in January for h.Pylori. I'm really worried about what they will do to my poor gut and if I'm ever going to get to a point where I don't have D for a month...feel good for a month.

Thanks for letting me vent. Any suggestions are always appreciated. Or feel free to share your own frustrations.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


beth01 Enthusiast
beth01
Posted

Talk to the doctor and ask what they can do to get your normal bacteria level up.  All your healthy bacteria are kaput from the antibiotics.  Are you taking probiotics?  If not, I would get a good one and take it.  You need to find a balance for your normal flora.  The second UTI might have to do with the large amounts of diarrhea.  Things can get messy down there if ya know what I am saying.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Talk to the doctor and ask what they can do to get your normal bacteria level up.  All your healthy bacteria are kaput from the antibiotics.  Are you taking probiotics?  If not, I would get a good one and take it.  You need to find a balance for your normal flora.  The second UTI might have to do with the large amounts of diarrhea.  Things can get messy down there if ya know what I am saying.

Thanks Beth. I take a probiotic twice a day. I agree about them being kaput. I really don't want to be on an antibiotic again. I'm 42 and with the constant issues I'm starting to feel 82. Sigh...

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

Sometimes the standard dose doesn't get rid of the UTI. It's good that they are culturing it. That way you can take what you need to wipe it out and not have to do this again in a month! Hope you feel better soon.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Sometimes the standard dose doesn't get rid of the UTI. It's good that they are culturing it. That way you can take what you need to wipe it out and not have to do this again in a month! Hope you feel better soon.

Awww...thanks kareng. I would like to not have this happen ever again! Have you had this issue? Anything I can do besides probiotics to help myself?

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

Awww...thanks kareng. I would like to not have this happen ever again! Have you had this issue? Anything I can do besides probiotics to help myself?

My mother had this. Every couple of months - another UTI. Finally landed her in the hospital - UTIs in the elderly can lead to some other things. Then they cultured it and she was able to get the right meds to wipe it out! It didn't come back!

I think things like yogurt and other probiotics are all you can do. I don't think they are supposed to be in the stomach with the antibiotic? Seems they might mess it up. I don't have any link for that, just makes sense to me.

Hopefully, this will take care of it .

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

Oh! THere is that stuff you can get to make it feel better. Azo? It was gluten-free last time I checked. Doesn't cure it but makes you feel better.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
  • Author
Posted

Oh! THere is that stuff you can get to make it feel better. Azo? It was gluten-free last time I checked. Doesn't cure it but makes you feel better.

I got some yesterday when I was thinking maybe I could muscle through it somehow. Flush it out with water...didn't work...just got no sleep last night.
Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

I got some yesterday when I was thinking maybe I could muscle through it somehow. Flush it out with water...didn't work...just got no sleep last night.

There is one for the pain and one to try to prevent.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

There is one for the pain and one to try to prevent.

I didn't realize that. I got the one for pain. I'm going to have to check into the other one. Thanks!
Link to comment
Share on other sites
beth01 Enthusiast
beth01
Posted

Walmart or Walgreen's can't remember which, sells over the counter pain relief for UTI's and cranberry pills to take to help prevent them. I believe they are the AZO brand.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Walmart or Walgreen's can't remember which, sells over the counter pain relief for UTI's and cranberry pills to take to help prevent them. I believe they are the AZO brand.

I have the ones for pain and they do seem to be helping. Will be taking my second antibiotic with dinner. Already feel nauseous.
Link to comment
Share on other sites
SMRI Collaborator
SMRI
Posted

Antibiotics can do that to you as well so the combination might just be overload for you!!  It sounds like whatever antibiotic they prescribed didn't get the bacteria the first go-round so the culture is good so they can get you on the right medication.  My daughter has been on I don't know how many antibiotics and it helps her to take them with yogurt.  I hope you feel better soon!!

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Thanks smri...I really hope this one does the trick. It's making me really nauseous though. My kids start school 2 weeks from today and it's another day of mom feeling bad.

Thanks for the yogurt tip...I will try that!

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

Thanks smri...I really hope this one does the trick. It's making me really nauseous though. My kids start school 2 weeks from today and it's another day of mom feeling bad.

Thanks for the yogurt tip...I will try that!

Open Original Shared Link

I have always heard you shouldn't take yogurt with the antibiotic for various reasons. Maybe eat something other than a dairy product?

Link to comment
Share on other sites
LauraTX Rising Star
LauraTX
Posted

Yes, there are many antibiotics that do not absorb well around dairy.  Call your pharmacist and ask first.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Open Original Shared Link

I have always heard you shouldn't take yogurt with the antibiotic for various reasons. Maybe eat something other than a dairy product?

Oh interesting. Thanks for that. I've taken 3 of the pills so far...11 to go. I really don't feel any better. Anyone with experience in this know how long it usually takes? This is the pits.
Link to comment
Share on other sites
SMRI Collaborator
SMRI
Posted

Open Original Shared Link

I have always heard you shouldn't take yogurt with the antibiotic for various reasons. Maybe eat something other than a dairy product?

 

That is for 2 specific classes of antibiotics.  If she is not one one of these, yogurt is fine and recommended.  She can call her pharmacist to double check.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Got a call from my Dr's office. The cultures came back negative. I don't have a uti. WTH. I'm still peeing all the time and have all of this pelvic pressure. I go in on Wednesday for a pelvic exam and ultrasound. I'm so tired of all of this. It really feels like there is always something wrong. Just want to cry.

Link to comment
Share on other sites
nvsmom Community Regular
nvsmom
Posted

(((HUGS)))

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

(((HUGS)))

Thanks Nicole...really needed that. Feeling scared.
Link to comment
Share on other sites
beth01 Enthusiast
beth01
Posted

I have had this same sort of problems.  Been through multiple bladder scans and bladder washes trying to figure it out.  They never seem to figure what causes it and then it runs it's course.  I usually keep up with the over the counter pain meds for UTIs and drink tons of water.  I hope you figure it out.  It really is a pain thinking you have a UTI all the time.

 

have you been glutened recently?  I seem to get this problem after a glutening.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

I have had this same sort of problems.  Been through multiple bladder scans and bladder washes trying to figure it out.  They never seem to figure what causes it and then it runs it's course.  I usually keep up with the over the counter pain meds for UTIs and drink tons of water.  I hope you figure it out.  It really is a pain thinking you have a UTI all the time.

 

have you been glutened recently?  I seem to get this problem after a glutening.

Thanks Beth. That sounds annoying. I've been feeling like this since last Wednesday. How long do yours usually last? The nurse I talked to mentioned ultrasound to look for ovarian cysts and uterine fibroids. I had uterine polyps removed in February along with my gallbladder. This isn't fun ya know? When do we get to feel good? Speaking of...how are you feeling? I know that you were having a rough time last week.

Oh...and I don't think I've been glutened...just feel like a walking symptom all the time.

Link to comment
Share on other sites
SMRI Collaborator
SMRI
Posted

Got a call from my Dr's office. The cultures came back negative. I don't have a uti. WTH. I'm still peeing all the time and have all of this pelvic pressure. I go in on Wednesday for a pelvic exam and ultrasound. I'm so tired of all of this. It really feels like there is always something wrong. Just want to cry.

 

Any chance you are pregnant?

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
  • Author
Posted

Any chance you are pregnant?

Gosh...I don't think so. Had my period 2 weeks ago. Also...my hubby had a vasectomy after my little one was born.
Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...