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

Prednisone As Treatment?

pturse

Recommended Posts

pturse Apprentice
pturse
Posted
  • Author

Lib

Thank you for your response. I guess everyone is different in terms of reacting to certain drugs. If I could handle a small does such as 5mg then perhaps I my be interested in talking more with my doctor about it. I never like taking drugs. But I am seeking some relief. First I plan to try the scdiet . . . see what happens and then when I have to go back to my GI in about 1.5 months we'll talk.

I appreciate your honesty and response.

pturse

  • 3 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pturse Apprentice
pturse
Posted
  • Author

Hey everyone, thought I would give an up date. I have really been feeling awful lately for no apparent reason. I know I have not had any gluten intake and yet the cramping & "D" has become out of control some days. I actually had to stay home from work one day because of it and that has never happened. Before going gluten-free I never really had cramping problems just "D" and bloating. Lately, the cramping is terrible and the distenstion and bloating are way out of control.

My doctor said according to my last blood work, my Celiac is out of control. We may do a biopsy (it has been over a year since my last) to see if my villi is even responding at all to the diet because he said that I may be one of those few that the gluten-free diet just does not work. In which case, the next step is steriod like Prednizone. He is against going that far as am I.

So my question and toughts lately have been, if I am nonresponsive to the diet, i.e. my villi are not healing at all, then why remain on the diet? I am sticking with for the time being and waiting until I get a biopsy which will probably be in January but that is what is running through my head. I do not want to take steriods and have to deal with those side affects. The side affects of Celiac are fine enough right now. I honestly feel like I am getting worse and feeling worse compared to when I wasn't gluten-free. Some days are good and some days are bad but lately it seems like the bad are out weighing the good.

lovegrov Collaborator
lovegrov
Posted

I can't keep track of what everybody's looked for so I'll just ask -- have you considered other intolerances and have you checked for bacterial overgrowth?

richard

pturse Apprentice
pturse
Posted
  • Author

Yes. I have checked for bacterial growth. There was none. As for other intolerances, I am lactose intolerant and already avoid dairy. What foods seem to bother me the most are vegetables. All vegetables. I do not eat meat so my options are limited.

Canadian Karen Community Regular
Canadian Karen
Posted

First off, you sound so much like me.....

I was in your shoes not too long ago, thinking for sure that I had refractory celiac disease, as my system was just not responding to the gluten-free diet. Even when I was gluten-free, lactose free, sugar free, caffeine free, the diarrhea just continued to be uncontrollable.... It has literally been years since I have had a solid b.m....

My GI sent me to a celiac specialist here in Toronto. He did a colonoscopy and they found collagenous colitis. It is quite rare, so most GI's don't even consider it. Only 2 out of 100,000 people get it apparently. If they are doing another colonscopy on you, make sure you ask your GI to take several biopsies to test for collagenous colitis, which has to be identified by a special pathologist under the microscope. Collagenous colitis does not show up while doing a regular colonscopy as it can only be viewed through a microscope.

I have started the first treatment, and I am 4 weeks into the 8 week treatment. Unfortunately, there is absolutely no change. So it looks like the next step: steriods..... I go back to see him the beginning of January.

Good Luck!

Karen

Canadian Karen Community Regular
Canadian Karen
Posted

Here is the link to the thread when I thought I had refractory celiac.....

I think you will find much of it very familiar to what you are going through.....

Open Original Shared Link

Have a great day!

Karen

FreyaUSA Contributor
FreyaUSA
Posted
So my question and toughts lately have been, if I am nonresponsive to the diet, i.e. my villi are not healing at all, then why remain on the diet?

I think that, especially in your case, remaining on a gluten-free diet is more than necessary. By eating gluten, wont you be doing more damage to your already damaged intestines? And, since you do not heal, you would be doing irrepairable damage.

Btw, what is the SCDiet?

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.

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


  • Member Statistics

    • Total Members
      128,070
    • Most Online (within 30 mins)
      7,748
    Sashley
    Newest Member
    Sashley
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      I also want to mention that using prednisone would likely also make the endoscopy results invalid. This steroid will cause gut healing and could mask the damage caused by celiac disease. 
    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
×
×
  • Create New...