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

Gut infections?


Joni63

Recommended Posts

Joni63 Collaborator

Hi,

I was dx'd with  celiac disease 8 years ago and have been strict gluten free. I need to know what type of gut infections other's have had and how were they treated. I'm having bloating and gas and some stomach pain/discomfort. I have tried SCD diet in the past with great success and seem to do well as long as I stay on it.  I cannot drink coffee/eat a lot of sugar or carbs or dairy without heart palpitations. I was treated twice for something (not dx'd) but dr's treated with 2 meds. Diflucon and 1 other I can't remember (it's a nasty one w/ lots of side effects) that cleared it up, but it always creeps back. I'm looking for a doctor in South Jersey who is knowledgeable with Celiac Disease and specifically different gut infections. I'm also looking for information on other types of gut infections and what the problem could be.  I now have high blood pressure and feel it's related. Please share if you've had anything similar and especially if there is a good doctor who can help me. I will travel to Philly.


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



Celiac.com Sponsor (A8-M):



manasota Explorer

Maybe you're thinking of SIBO (small intestine bacterial overgrowth)?  There are several antibiotics used to treat that--the most common, I think, is rifaximin (Xifaxin).  SIBO is something that tends to come back again.

I can definitely empathize with you.  Gluten free for 6 years and still not well.  SCD helped me also.  I'm still stuck on eating only a few whole foods.  Definitely no dairy, grains, sugar, etc.  Sadly, nothing packaged.  I recently completed a course of Xifaxin.  Some improvement noted.  Hoping for more with time.  They told me that is possible.

I can't help you with a doctor recommendation as I'm not near you, sorry.

I'm hoping for that cure to be discovered by 2025, they think.  Hey, I can dream, can't I?

Lillybit Newbie
13 hours ago, manasota said:

Maybe you're thinking of SIBO (small intestine bacterial overgrowth)?  There are several antibiotics used to treat that--the most common, I think, is rifaximin (Xifaxin).  SIBO is something that tends to come back again.

I can definitely empathize with you.  Gluten free for 6 years and still not well.  SCD helped me also.  I'm still stuck on eating only a few whole foods.  Definitely no dairy, grains, sugar, etc.  Sadly, nothing packaged.  I recently completed a course of Xifaxin.  Some improvement noted.  Hoping for more with time.  They told me that is possible.

I can't help you with a doctor recommendation as I'm not near you, sorry.

I'm hoping for that cure to be discovered by 2025, they think.  Hey, I can dream, can't I?

I'm new to this also.  What is SCD diet?

Joni63 Collaborator

Thanks for your reply. Yes, I think SIBO is what I'm about. I decided to go to the Celiac Center at Jefferson and see what happens with that visit the end of january. I can't stand this fighting battle - it's always something. Sometimes my immune system is in great shape and other times it's constant chaos. I went 8 months feeling the best ever, then crashed again. I always seem to crash and burn and it takes a long time to get back to feeling well. I have EBV and an elevated ANA score and a high DEAH-S. I'm hoping I can get good results from the Celiac Center because I need a team of doctors to figure me out. Manasota, it sounds like you have some similar issues. I hope your recent treatment helps and you are on the mend. I need to be tested for sibo and candida. 

 

SCD - specific carbohydrate diet. It's very strict and eliminates a lot of foods. One website is scdlifestyle.com

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. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    2. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

    3. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    4. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

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

    • Total Members
      132,992
    • Most Online (within 30 mins)
      7,748

    Elizabeth xxx
    Newest Member
    Elizabeth xxx
    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

    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
×
×
  • 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.