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Prednisone As Treatment?

pturse

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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...
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pturse Apprentice
pturse
Posted
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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?

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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