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
      131,807
    • Most Online (within 30 mins)
      7,748
    MoonBear
    Newest Member
    MoonBear
    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

    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for  them to see better with the bowel ,but you think they would use something a little less traumatic  for ibd sufferers on the bowels by now ,I hope your feeling better today 🙏
×
×
  • 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.