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

Intravenous treatment

RuthWill
 Share

Recommended Posts

RuthWill Newbie
RuthWill
Posted

Hi - Does anyone have experience with intravenous infusion treatment for ulcerative colitis? Remicade, Simponi, etc.

Thanks!

 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, RuthWill!

Is your concern here that the injections might not be gluten free?

RuthWill Newbie
RuthWill
Posted
  • Author

No. We have celiac with UC in our family so I’m wondering if the celiac community has any experience with infusion treatments. 

trents Grand Master
trents
Posted
(edited)

In what sense? Their effectiveness? Side effects? Are you or is someone in your family already using this therapy or are you just considering it?

Edited by trents
RuthWill Newbie
RuthWill
Posted
  • Author

Yea - exactly. How effective are the treatments?  Are there significant side effects?  Thanks for helping me clarify.  

Wheatwacked Veteran
Wheatwacked
Posted

Scary looking side effects.  Remicade Official Consumer Website

With Celiac Disease your autoimmune is weak and many vitamin deficiencies due to malabsorbtion syndrome. Most with Celiac and many other autoimmune diseases have low or deficient vitamin D, less than 29ng/ml.   Vitamin D moderates the immune system. Corticosteroids support the immune system while drugs like Remicade knock it out, opening you up for a host of worse diseases. . Our bodies make Prednisolone as a product of cortisol so taking it is a way of bypassing possible adrenal insufficiency. And it works. I've been on prednisone since 2012. Before GFD I took 30 mg to control my symptoms. After GFD down to 5 mg twice a day. But I took prednisone for two years before starting GFD so I have secondary adrenal insufficiency. Short term low dose would not have. No side effects. My favorite scare tactic to not take prednisone was "inappropriate sense of well being". I guess as far as most doctors are concerned if you are sick you should feel bad until they heal you or you die. The infusions seem like a temporary fix for a nutritional problem.

If your vitamin D is low (simple blood test that is accurate), less than 70-90 ng/ml, fix that first and any other deficiencies (D, B vitamins, choline, potassium are common). And of course Gluten FREE Diet. You can always try the infusion later if the vitamins don't help. I take 10,000 IU vitamin D a day since 2015 and 10 others I've added in along the way. By the fourth day of 10,000 I was like 'Sunshine in a bottle" 8,000 had not helped. Lower amounts were not effective for me. You'll recognize it when it happens.

trents Grand Master
trents
Posted

Ruth, my thoughts are that it is imperative that you and your family get control of the ulcerative colitis so whatever you must do to accomplish that is probably worth the risk. But there is one issue with some of those immune system suppressing agents you really need to ask about and that is, "Once I start, will it be possible to discontinue the med at some point if I improve?" The reason I ask is that I believe once Remicade therapy is started you cannot ever go off the drug without risk of experiencing a rebound of the colitis with a vengeance. I'm not a physician but I wonder if a limited course of prednisone might get you back on track with healing without the "I'll be on this forever" risk.

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

Celiac.com Sponsor (A8-M):


Rogol72 Collaborator
Rogol72
Posted

I agree with trents, it is important to get control of ulcerative colitis as a priority.

Nutritional deficiencies should be corrected as soon as possible, as it will help both conditions especially Vitamin D and Zinc. The body needs an adequate supply of vitamins and minerals to heal. With the malabsorption of celiac disease and blood loss of UC, that’s difficult to achieve without supplementation.

https://www.crohnscolitisfoundation.org/diet-and-nutrition/supplementation

You may find answers to you’re Remicade questions here …

https://www.crohnscolitiscommunity.org/crohns-colitis-forum
https://crohnsforum.com/forums/Remicade/

I’ve never taken Remicade, though was asked as part of a clinical trial years ago but decided against it.

I had severe ulcerative colitis before my celiac disease diagnosis. I was treated aggressively with prednisone initially, then asacolon and azathioprine for years. It took ages to taper off the prednisone, cycling between flares and clinical remission, yo-yoing dosage. I was told I would be on azathoprpine for life, but I haven’t taken it in 10 years and my UC is in long term remission.

If I knew then what I know now about the importance of vitamins and minerals in healing, I would have taken them years ago.

 

trents Grand Master
trents
Posted

Of course, the main risk associated with any immune system suppressing agent is that it increases the risk for developing other infections and even cancer. They all, more or less, are a shotgun approach to fixing the problem.

But let me ask you. Is your celiac disease (and that of other family members with celiac disease) well controlled? Are you and they diligent about eating gluten free?

Raptorsgal Enthusiast
Raptorsgal
Posted

Does anyone know if the Iron infusion is gluten free 

trents Grand Master
trents
Posted

It probably is but without calling the clinic/hospital and finding out what brand/product they use there is no way to tell for sure. Call the department where that is done and get them to check on that. Good question, though.

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


  • Member Statistics

    • Total Members
      127,510
    • Most Online (within 30 mins)
      7,748
    Naudine
    Newest Member
    Naudine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Can gallbladder issues cause symptoms of celiac disease?

      By knitty kitty · Posted

      Welcome to the forum, @robingfellow and @Mr-Collateral531, I also had to have my gallbladder removed in emergency surgery.  The gallbladder uses lots of thiamine vitamin b1 to function.   The gallbladder cannot secrete bile if it doesn't have sufficient thiamine.  Thiamine provides our muscles and glands energy to move and secrete needed enzymes and hormones.  The thyroid is another gland that requires lots if thiamine to function and secrete hormones.   Our brains, just thinking at a desk job, requires as much thiamine as our muscles do if running a marathon.   Migraines are linked to thiamine deficiency. Thiamine is the first of the eight B vitamins that our body needs. Thiamine can only be stored for three weeks at most.  Our thiamine stores can be depleted in as little as three days.  We need more thiamine when we have a physical injury (like recovering from surgery or fighting the flu), if we're emotionally stressed or traumatized, and if we're physically active.  Thiamine, like the other B vitamins, is water soluble and easily excreted in urine or most in diarrhea.  B vitamins are commonly poorly absorbed in Celiac Disease.  Thiamine and the other B vitamins need to be taken together because they interact with each other to make life sustaining enzymes.  Thiamine deficiency can affect individual organs.  Gallbladder dysfunction is connected to thiamine deficiency, as is hypothyroidism.    Migraines are connected to thiamine deficiency.  Gastrointestinal Beriberi (abdominal pain, vomiting, etc.) is a result of thiamine deficiency.  Tachycardia and fatigue are also symptoms of thiamine deficiency.   Thiamine and magnesium make enzymes that are essential for life.   Thiamine is needed to absorb certain minerals like iron.  Anemia and thiamine deficiency frequently occur together.  Thiamine deficiency can cause poor blood cell production (including low antibody production).   Thiamine interacts with other vitamins and minerals.  Vitamin D is not utilized by the body until turned into an active form by Thiamine. Thiamine is safe and nontoxic even in high doses.  High doses of thiamine correct deficiencies quickly which prevent further health deterioration.  A one a day type multivitamin is not sufficient to correct vitamin and mineral deficiencies that occur in the malabsorption of Celiac Disease.   The Gluten free diet is low in vitamins as they are not required to be enriched with vitamins lost in processing.  Supplementing with thiamine and the B vitamins boosts their absorption.   Helpful Reading: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/ P. S. Try a DNA test to see if you have any known genes for Celiac Disease before doing a gluten challenge.
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the reply ! I am asking because tomorow i have egd and nobody told me not to eat gluten-free oats… and i was scared that it could ruin my biopsy results… 
    • trents
      Certified gluten free oats

      By trents · Posted

      Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      Can gallbladder issues cause symptoms of celiac disease?

      By robingfellow · Posted

      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
×
×
  • Create New...