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

Parasites!

ann72601

Recommended Posts

ann72601 Apprentice
ann72601
Posted
:o I have layers and layers of problems just like everyone else with celiac disease......but, I also have parasites that refuse to budge. I've done everything I've ever heard of and I'm still infested. I understand that these things can be just as devastating as the celiac disease. I would really appreciate some help. Oh, I know that there are over 3,000 types of parasites, but mine is in the family of flukes.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Have you talked to your doctor about this? There is prescription medication that can help in most cases.

Jestgar Rising Star
Jestgar
Posted

I agree with RWG. Aren't most parasites susceptible to some drug or another?

ann72601 Apprentice
ann72601
Posted
  • Author
Have you talked to your doctor about this? There is prescription medication that can help in most cases.
ann72601 Apprentice
ann72601
Posted
  • Author

Yes, I have. I've been talking a lot for the past 10 years to several, "my doctor(s)." I either seem like a nut or I don't make myself clear, or something?? Anyway, it's taken this long to get someone to check for Celiac. After I spoke to the doctor about what I was seeing in the potty, she said it was something I was eating. Hmm... I feel defeated at the doctor's office.

GlutenGalAZ Enthusiast
GlutenGalAZ
Posted

I don't know anything about parasites but the link below is from a while ago on here... maybe it might help.

GOOD LUCK

https://www.celiac.com/gluten-free/index.php?showtopic=45020

Jestgar Rising Star
Jestgar
Posted
Yes, I have. I've been talking a lot for the past 10 years to several, "my doctor(s)." I either seem like a nut or I don't make myself clear, or something?? Anyway, it's taken this long to get someone to check for Celiac. After I spoke to the doctor about what I was seeing in the potty, she said it was something I was eating. Hmm... I feel defeated at the doctor's office.

they wouldn't even test you for parasites?

get a new doctor. They should test you for what you think is wrong.

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

Celiac.com Sponsor (A8-M):


ann72601 Apprentice
ann72601
Posted
  • Author
they wouldn't even test you for parasites?

get a new doctor. They should test you for what you think is wrong.

ann72601 Apprentice
ann72601
Posted
  • Author

Thanks for the tips guys. No, they would not test me for parasites. I'm thinking I'll just bring a bunch of them with me to the doctor's appointment. Bet that would get me the test. :-) No, actually I think I've developed a phobia about being able to communicate effectively with a doctor. I never communicate what I think I am to them and it ends up with me being seen as 'anxious'. By the time that anxiety has been spotted, they're satisfied that they've found the answer to the problem. Maybe the anxiety is because I have a bunch of bugs eating my guts and liver? I wish Xanax killed parasites.

Jestgar Rising Star
Jestgar
Posted

Bringing them in is probably the best plan. Hard to deny what's right in front of your eyes...

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks for the tips guys. No, they would not test me for parasites. I'm thinking I'll just bring a bunch of them with me to the doctor's appointment. Bet that would get me the test. :-) No, actually I think I've developed a phobia about being able to communicate effectively with a doctor. I never communicate what I think I am to them and it ends up with me being seen as 'anxious'. By the time that anxiety has been spotted, they're satisfied that they've found the answer to the problem. Maybe the anxiety is because I have a bunch of bugs eating my guts and liver? I wish Xanax killed parasites.

Bringing in a stool sample is a good idea, finding a different doctor even better. Stool testing is what they need to do and many times they will request 3 samples in case they were missed on the first on. They should give you a kit for collecting. Also do make sure that the Xanax you are taking is gluten free. If it is name brand it most likely isn't but at least one of the generic ones is. The one I take is made by Dava Pharmacuticals and is labeled as alprazolam. It was verified by my pharmacey and I also called the company and double checked. Also since your doctor seems to be an idiot I figured I should also mention that you need to be very careful with this drug, it is highly addictive. My doctor has me take it for 3 days then skip 2 to prevent me from becoming addicted. If I am not doing anything that I need to take it for or I am not really anxious on a particular day I also skip it to be safe. Once you become addicted it is hard to stop.

ann72601 Apprentice
ann72601
Posted
  • Author
Bringing in a stool sample is a good idea, finding a different doctor even better. Stool testing is what they need to do and many times they will request 3 samples in case they were missed on the first on. They should give you a kit for collecting. Also do make sure that the Xanax you are taking is gluten free. If it is name brand it most likely isn't but at least one of the generic ones is. The one I take is made by Dava Pharmacuticals and is labeled as alprazolam. It was verified by my pharmacey and I also called the company and double checked. Also since your doctor seems to be an idiot I figured I should also mention that you need to be very careful with this drug, it is highly addictive. My doctor has me take it for 3 days then skip 2 to prevent me from becoming addicted. If I am not doing anything that I need to take it for or I am not really anxious on a particular day I also skip it to be safe. Once you become addicted it is hard to stop.

Thanks for the heads up about the Xanax. I went online and found it and it was gluten-free. I didn't know anything about Xanax but it has helped with the nervous system. I was worried about addiction, but it helps so much that I don't want to think about it too much right now. I'm having a bad time as I am still new to the celiac lifestyle. I will keep your advice close though.

I will take in samples. I will also look for a doctor, which has been a real challenge since moving here 2 years ago. I've seen 5 or 6 in that time span, whereas in Anchorage, I used the same doctor for more than 10 years. It's taken over 10 years to get this diagnosis and I've been through so much to get it. Nothing that the rest here have not suffered through though. The idea of looking for another doctor is overwhelming today. I'm sure things will be brighter tomorrow.

Thank you all for your advice: I appreciate it so much.

Have a beautiful day,

Ann

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks for the heads up about the Xanax. I went online and found it and it was gluten-free. I didn't know anything about Xanax but it has helped with the nervous system. I was worried about addiction, but it helps so much that I don't want to think about it too much right now. I'm having a bad time as I am still new to the celiac lifestyle. I will keep your advice close though.

I will take in samples. I will also look for a doctor, which has been a real challenge since moving here 2 years ago. I've seen 5 or 6 in that time span, whereas in Anchorage, I used the same doctor for more than 10 years. It's taken over 10 years to get this diagnosis and I've been through so much to get it. Nothing that the rest here have not suffered through though. The idea of looking for another doctor is overwhelming today. I'm sure things will be brighter tomorrow.

Thank you all for your advice: I appreciate it so much.

Have a beautiful day,

Ann

The best way to get a for sure about whether the Xanax is gluten free is to call your pharmacist and have them check. You can do it over the phone. They should also note in your 'chart' that you are gluten free but remind them to check anyway whenever you fill a script.

I can certainly sympathize with the aftereffects of misdiagnosis! I am still looking for a doctor who is knowledgeable and it's hard. I hope things get better soon.

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    4. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
×
×
  • 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.