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

My Doctor Is Really Working With Me!

Joni63

Recommended Posts

Joni63 Collaborator
Joni63
Posted

Hey everyone,

I have been posting about some of the problems I'm having such as ringing in the ears, difficulties sleeping, candida problems (due to recent antibiotics), still bloating, stomach pain and fatigue and got a lot of feedback from people on this board about different tests and things to have checked. My stomach did go flatter and didn't hurt after about 2-3 months gluten free, but that has changed and my bloating and stomach pain are back.

I went to the library and also checked out "The Gluten Connection" written by Shari Leiberman, PHD, CNS, FACN. She has had 20+ years experience in dealing with the gluten free diet. I wanted to see if my Doctor agreed with the supplements that were suggested in the book. For the most part, she did. But the only thing she didn't really agree on was for me to use ProBiotics. She said new research is finding that they aren't as effective as they first believed. I'm not sure what to think about this, but I welcome your expiences and opinions. I'm very close to ordering them, an Immune Booster and a good multivitamin from Kirkmanlabs.com. Also, if anyone has experienc with Kirkman products I'd be happy to hear about them.

Anyway, I wrote down everything ahead of time and brought in the book to the appoinment.

Heres what she found and what we agreed to have tested/checked at this point:

For the Candida she gave me Terazole 3 day and Diflucan and said it could be systemic. How cool is that? My GI Doctor said Candida wouldn't cause bloating, fatigue and stomach pain.

Blood tests for Iron, Ferritin, TIBC, B12, Folate, Vitamins A, C, B, D, E.

Blood tests for Anithyroid Peroxidase Antibody, TSH, Thyroid Panel, And Antithyroglobulin Antibody (I think the last one is right?)

She also is sending me to an ENT and my appointment is Monday the 31st. SHe said it was Severe Otitus Media and fluid in my right ear.

She felt the lack of sleeping properly could be from a vitamin defieciency or thyroid problems.

I really hope I can get some answers and relief.

Please feel free to post your experiences with these problems and what you found through testing. I really want to feel good and not-bloated again. I also tried Casien free for about a week with no change and I was never totally Casien free in the beginning of the gluten free diet, but all my symptoms did go away at first. How long should someone try the Casien diet for???

Thank you for any information!

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

Celiac.com Sponsor (A8-M):


OBXMom Explorer
OBXMom
Posted

Although I have nothing in the way of tests and results to offer, I do understand the great feeling of having a responsive doc. I'm happy your doc is listening & working with you, and hope you feel much better soon.

kitten37 Newbie
kitten37
Posted
Although I have nothing in the way of tests and results to offer, I do understand the great feeling of having a responsive doc. I'm happy your doc is listening & working with you, and hope you feel much better soon.

My sentiments as well!

Joni63 Collaborator
Joni63
Posted
  • Author

Thank you so much kitten37 and OBXMom. I was just about at my wits end because it is a group of doctors and I haven't been happy with the others I've seen there so far. She was my last hope or I was going to branch out and look for another GP. Something that is so scary because it's such a pain with my insurance.

horsesjapan Apprentice
horsesjapan
Posted
I also tried Casien free for about a week with no change and I was never totally Casien free in the beginning of the gluten free diet, but all my symptoms did go away at first. How long should someone try the Casien diet for???

Thank you for any information!

When I was on an elimination diet (breastfeeding my food allergic baby), the reading I was doing on line indicated that dairy (caseine) can stay in your system for 2-4 weeks. I have no scientific data handy, but based on that I'd give it at least a month and avoid all dairy (ie if the label says whey, assume it's not totally devoid of caseine).

Good luck and glad you have a supportive doc!

Nancy

waiting on celiac blood test results

Joni63 Collaborator
Joni63
Posted
  • Author
When I was on an elimination diet (breastfeeding my food allergic baby), the reading I was doing on line indicated that dairy (caseine) can stay in your system for 2-4 weeks. I have no scientific data handy, but based on that I'd give it at least a month and avoid all dairy (ie if the label says whey, assume it's not totally devoid of caseine).

Good luck and glad you have a supportive doc!

Nancy

waiting on celiac blood test results

Thank you Nancy. I had no idea it could be 2 - 4 weeks, possibly. I'm still avoiding it and will contiue. I have to go and see the doctor monday because something came out wrong with my blood tests. I'm just hoping to get some answers for my problems. It is nice to have a doctor who takes action and orders tests when you describe symptoms instead of just writing a script and sending me on my way.

Good luck with your celiac blood results. I hope you get some answers and relief with the results.

Archived

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

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


  • Member Statistics

    • Total Members
      131,601
    • Most Online (within 30 mins)
      7,748
    rita jean
    Newest Member
    rita jean
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.