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

Deficiency Questions


newceliac

Recommended Posts

newceliac Enthusiast

As stated in an earlier post, I am a newly diagnosed celiac. I have been on the diet for about 1 1/2 weeks but I just don't seem to be feeling much better. I still have the stomach pains, bowel problems and joint and muscle pain.

I did have a severe vitamin d deficiency and osteoporosis diagnosed a few months ago. I took mega doses for 6 weeks but I am not sure if it helped because I had undiagnosed celiac at that time so I obviously have malabsorption problems. I have a follow up appt. with the endocrinologist in a couple of weeks. He doesn't know that I have been diagnosed with celiac.

I have been doing a lot of reading and researching since I am still not feeling any better. Could part of the problem for the continued symptoms be a result of deficiencies. Could it be possible that I may still have a vitamin d deficiency and maybe also a vitamin b12 deficiency.

If so, could these hinder the healing process of celiac? :huh:

What about pancreatic insufficiency? Did anyone have a problem with that?

Thanks in advance for any assistance.


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



Celiac.com Sponsor (A8-M):



mamabear Explorer
As stated in an earlier post, I am a newly diagnosed celiac. I have been on the diet for about 1 1/2 weeks but I just don't seem to be feeling much better. I still have the stomach pains, bowel problems and joint and muscle pain.

I did have a severe vitamin d deficiency and osteoporosis diagnosed a few months ago. I took mega doses for 6 weeks but I am not sure if it helped because I had undiagnosed celiac at that time so I obviously have malabsorption problems. I have a follow up appt. with the endocrinologist in a couple of weeks. He doesn't know that I have been diagnosed with celiac.

I have been doing a lot of reading and researching since I am still not feeling any better. Could part of the problem for the continued symptoms be a result of deficiencies. Could it be possible that I may still have a vitamin d deficiency and maybe also a vitamin b12 deficiency.

If so, could these hinder the healing process of celiac? :huh:

What about pancreatic insufficiency? Did anyone have a problem with that?

Thanks in advance for any assistance.

It will take awhile(weeks to a couple of months) to heal ;and in the meanwhile ,it most likely will take mega- megadoses of your vitamins and supplements to be enough to be assimilated. I haven't read your other post yet, so I'm not aware of who you have to help you, medically speaking. If you have a GP, Internal Medicine doctor, GI,etc. I'd suggest asking for testing of Vit B12,Folate,Iron,Ferritin, chemistry profile to include magnesium,thyroid(TSH,thyroid antibody profile,free T4) and CBC(red cells,white cells, platelets). Pancreatic insufficiency may be secondary or primary, and pancreatic enzymes may certainly help. There will be others on the board who may have suggestions for non-Rx meds for this.

ravenwoodglass Mentor

A week and a half is not long enough on the diet to heal you yet. It took years for you to get as damaged as you are and it will take a bit for you to heal gluten free. It is a good idea to get the levels checked that were mentioned if you can. For one thing after 6 months to a year it is beneficial to recheck levels to see if you are absorbing properly again. Meanwhile it is a good idea to supplement with gluten-free and if possible CF and SF vitamins. You will greatly benefit from a sublingual B12, it will be directly deposited into your bloodstream bypassing the gut. Be sure to tell your doctor what supplements you are on and if possible get the blood test done before you start the B12, not because excessive amounts are harmful, they are not, but because the supplement could give a false high level on the blood test.

As to the pancreas support, I took pancreatin by twinlab for a while after an antibiotic gave my pancreas a good whap. I did this because all food I ate was coming out looking like it went in. I was not digesting anything, it was much worse than even at my worst prediagnosis. I had never seen totally undiagested food even with 24 hour D. It helped very quickly and I was able to stop taking it after a month. I am not a big fan of taking things that I do not for sure need and IMHO unless you are sure you need something like that you should wait until you have been on the diet for at least a couple of months before you take something like pancreatin. Give the diet a good chance and make sure you are aware of nonfood sources of gluten like your shampoos, cosmetics, art and craft supplies, things like drywall and the compound, CC in the household etc. To heal the quickest go with single ingredient fresh unprocessed foods for now, that will benefit you the most and cut the risk of CC. I hope you get some relief soon.

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. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

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

      Labs ? Awaiting in person follow up with my GI

    3. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    4. - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      EMA Result

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

    • Total Members
      133,165
    • Most Online (within 30 mins)
      7,748

    AmynDevyn
    Newest Member
    AmynDevyn
    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

    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.