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

Totally Overwhelmed


amcam17

Recommended Posts

amcam17 Rookie

Ok fellow Celiacs,

I haven't posted on here in forever and I was doing amazingly well. Well I was until recently unfortunately. I've been so miserable the past few weeks and I'm really using hope at this point. I went to my GI doctor today and she said I'm following everything well and sometimes it just randomly flares up. I told her that I've been following the gluten free diet very well. She's retesting my celiac counts, calcium, iron and some other items that I can't remember off the top of my head. The next thing she said scared me to death. I'm 21 years old and they are sending me for a dexa scan for osteporis! (Sp) I'm absolutely terrified...

Also, not going into to much detail but once a month right around the time my period starts, I get dh really bad and there's no explanation for it...The doctor said it was normal but the pain I expierenced last night was unbearable. Also, my periods have been early and I'm on birth control for a blood disorder.

I also got a flu shot yesterday and then dh hit a few hours later, so running on not much sleep working like crazy and trying to keep up with going to school online.

I'm scared confused exhausted and everything else...I think I might be going through withdrawal symptoms..ugh! not fun.

Please help!!!!


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Scan, no big deal, even if it shows bone loss.... bone constantly remodels and replaces itself as long as the proper nutrients are consumed and can be absorbed.

If you are not already, try taking a gluten free calcium, D, magnesium supplement. Also, a gluten free vitamin B complex.

You may try going to a lower carbohydrate, higher (good) fats and protein diet also, to try to help with the periods, esp. if you have a tendency towards polycystic ovaries.

For your meals, you may want to switch to more of a non traditional breakfast and get away from cereals and see if that makes a difference. Also, if you can bear to choke down some vegetables for breakfast, that helps with energy.

Persei V. Enthusiast

Yeah, what takala says. Keep your diet on check and make sure you have all the nutrients necessary to put your bones back into place, and everything will be rainbow and flowers.

1desperateladysaved Proficient

I think we have been in the totally overwhelmed place. Hang on.

Diana

GFinDC Veteran

Some of the members with DH say that their DH flares when they get gluten and iodine together. So they follow a low iodine diet when their DH is flaring. It could be you have some gluten in your diet and don;t realize. Check everything again and re-verify anything that you checked before. Ingredients can change.

Also check you shampoo and skin lotions.

pricklypear1971 Community Regular

I agree. My DH was hormone aggrivated but not caused. Scrutinize your diet and see if something is in it that is glutening you, then try a low iodone diet for a while and see if that whacks down the DH.

LauraB0927 Apprentice

Don't be alarmed by the bone scan test, its just a preventative measure so your doctors can watch your bone density. I'm 28 and was diagnosed in May and they are sending me for the same scan in November along with the 6 month blood tests to make sure everything is ok. Just be glad that your doctor is educated and is getting you the right tests!!!

We all have been overwhelmed with this at times and it WILL get better, just stick to your diet and wait for the light at the end of the tunnel. Let us know how you're doing!


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



Celiac.com Sponsor (A8-M):



Archived

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

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

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    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

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.