Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac just diagnosed


versace114

Recommended Posts

versace114 Newbie

I am 52 yrs old and never been able to gain weight, my biopsy and blood work confirms, I am going to have to go to Carti so they can keep an eye on my blood and give me IV vitamins and nutrients as my body will no longer hold them. Any encouragement and advise is welcome as I am scared due to the fatigue and all the other symptoms. I’m suppose to go gluten free for 3 months recheck my blood work all though we don’t look for it to change as I’m not a bread person. Is there any help out there for people who can’t afford the food? Thank you all in advance .

🙏😊


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, versace114.

Carti?

You don't have to rely on processed "gluten free" food in order to avoid gluten. It is not that difficult to avoid gluten while resorting to main stream food if you are careful. Much ordinary food is naturally gluten free such that you only need to be concerned with cross contamination.

ravenwoodglass Mentor

Welcome to the board. Hopefully you will be feeling a lot better by that appointment. It can take some time to heal though so don't get discouraged if you make some mistakes with the gluten free life at first. If you go to the top of the Coping Section there is 'Newbie" post that has a lot of good info. You may feel a bit better once the infusions are over and you vitamin levels are up a bit. Do make sure they know you are celiac just to be on safe side. If you take any meds call your pharmacist and let them know you have been diagnosed so they can check any scripts you are on.

Eating gluten free doesn't have to be expensive. You an go with meats, fish, chicken, veggies and fruits etc that yuo prepare at home. I would advise avoiding restaurants or eating in others homes as these are the most common ways we can get 'glutened'. I don't have much time but we have a lot of great and very knowledgable folks here that can help. Read as much here as you can and I hope you are feeling better soon.

trents Grand Master

The main thing is to focus on buying fresh meat, fresh vegetables and fresh fruit when available. Avoid seasonings apart from salt and black pepper as some seasonings are cross contaminated with gluten in production processes. Cook your own meals. Avoid eating out like the plague. Fix simple things that don't have coatings or crusts.

Do you share a house with people who are still using gluten?

Wheatwacked Veteran
1 hour ago, versace114 said:

give me IV vitamins and nutrients

Make sure you are getting Choline. Either eggs and meat or pills. Apparently no one sells choline in parenteral feeding choices. They do in Europe. 

"choline deficiency appears to activate cellular apoptosis."   https://pubmed.ncbi.nlm.nih.gov/19874943/

Quote

Choline is an essential component of all cell membranes, and has been considered a required dietary nutrient since 1998 by the US Institute of Medicine's Food and Nutrition Board. Choline is necessary for DNA repair, mediated by its role as a methyl donor. It also serves as the precursor for the neurotransmitter acetylcholine. Evidence has accumulated that hepatic steatosis, which occurs during parenteral nutrition therapy, develops as a result of choline deficiency Buchman AL. The addition of choline to parenteral nutrition. Gastroenterology. 2009 Nov;137(5 Suppl):S119-28. doi: 10.1053/j.gastro.2009.08.010. PMID: 19874943. https://pubmed.ncbi.nlm.nih.gov/19874943/

 

Wheatwacked Veteran
2 hours ago, versace114 said:

my body will no longer hold them.

A short time gluten free and you will start getting better. Next step is to replenish your vitamins and minerals. Some are low because of malabsorption (the reason for Carti) but some could be diet. Recovery is do-able. In 2013 I could not stand long enough to watch a single cup coffee brewer do its job.

RMJ Mentor

Gluten is in a lot of processed foods besides bread. I didn't eat much bread before my diagnosis but still got enough gluten for high antibody levels.

Hopefully now that you have a diagnosis and will soon have iv nutrients you’ll start feeling better and will become less and less scared.  We’re here to support you.


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,283
    • Most Online (within 30 mins)
      7,748

    mamakris
    Newest Member
    mamakris
    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

    • numike
      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...