Short Course of Steroids?

[agentace]

Hi All - 

Did anyone do a course of steroids to bring down inflammation shortly after diagnosis to bring down inflammation? Also - did anyone have inflammation markers followed after diagnosis; if so how long did it take for them to come down to normal range (with or without steroids)?

Thanks in advance!

 

[Fenrir]

I don't think steroids are generally used to treat Celiac Disease. Also, CRP  which is typically used to test for inflammation is not specific to celiac disease and could be caused by something else. Many celiacs have negative inflammation blood tests and yet have extensive damage in their intestines. 

My inflammation markers were all negative in spite of having a Marsh grade of 3b.

[Neo]

My doctor has given me a Prednisone z pk a couple times to treat especially difficult symptoms from accidental glutamination. It was quite helpful in shortening the duration of my suffering as well as considerably easing the symptoms.

[Fenrir]

Prednisone is nasty stuff. A lot of people have very bad reactions to it. Not gluten related reaction. I get extremely anxious and my blood pressure jumps. Just something to watch for if you haven't taken Prednisone before. Not everyone has those symptoms but they do happen.

[cyclinglady]

Your GI gave you steroids in case of gluten exposures?  That is not the standard treatment for celiac disease.  Are you sure your doctor is celiac-savvy?  

I agree with Fenrir.  Like him, I never had an elevated CRP and I had villi damage.  You might have something in addition to celiac disease.  Do not get “boxed” into a single diagnosis.  I have never taken steroids and I hope never to take them.  They have some serious side effects.  Easier and safer just to avoid gluten (with time and practice).  

I see that you are a newbie.  Know that  it takes time to heal — like a year or longer.  Why?  Because the gluten-free diet has a steep learning curve.  Mistakes will be made.  Setbacks will occur.  Each gluten exposure can wreak havoc (like my only symptom was anemia and now I get horrible GI symptoms when exposed to gluten).  Is your Hashimoto’s being treated?  Have other autoimmune illnesses been ruled out? Know that you can keep developing autoimmune disorders, but I am hoping you do not!  

If you are on steroids, please continue them and talk to your doctor about getting off them slowly.  

https://www.mayoclinic.org/steroids/art-20045692

Edited March 10, 2020 by cyclinglady

[agentace]

It was not my GI doctor, but my rheumatologist that offered them once the other autoimmune diseases were ruled out, but my CRP and ESR were high. My Hashimoto's is under control at the moment, but over the last year I have been struggling with that quite a bit. Regardless, I'm inflamed whether it be celiac or my Hashi's! I have been diagnosed since January, so I am still very new and very much in the healing process.

And yes, I am definitely considering the risks associated with steroids (hence the post, lol!), especially these days!

[cyclinglady]

Just stay the gluten free course.  I can tell you that once healed (and it took about a year (even though I already had been cooking gluten-free for my hubby for 12 years) because I had so many other related issues) my thyroid was no longer enlarged, and my nodules disappeared.  My last gluten exposure caused autoimmune hives and gastritis.  At least they developed at that time.  My allergist checked my thyroid antibodies and they were at 300 which was better than over 2,000 in years past.  My thyroid is irreversibly damaged, so I need thyroid hormone replacement for life.    ? About a year later, I had a repeat endoscopy.  My small intestine healed, but that was when I was diagnosed with autoimmune gastritis.  My allergist said the hives were related to Hashimoto’s and my GI said the Gastritis was also related to Hashimoto’s.  My take?  I have autoimmune disease.  It happen to hit my small intestine, thyroid and now stomach.  I am pretty sure something else is brewing.  My GI and joke about it.  He also knows that I want to avoid medications as much as possible.  I do take thyroid hormone replacement though.  I am hoping that RA and lupus are not in my future (runs strongly in my family).  

What do I do?  Eat a super clean gluten-free diet with a focus on avoiding non-processed foods, especially those with ingredients I would not find in my pantry.  I only eat out at dedicated gluten-free restaurants.  Yes, true.  If anyone lived through six months of hives or had Dermatitis Herpetiformis, they would understand.

Hang in there.  Master the diet.  You can feel better!  

[agentace]

Thanks! Since going gluten free in January I began suffering from hives as well. I had it checked out at the allergist pretty much thinks it is idiopathic and most likely autoimmune, so I do understand! Hives are scary, I felt like I was on the verge of anaphylaxis at any minute and couldn't pin it down to anything! A daily antihistamine in addition to the whole foods based diet has helped. But, I am still suffering from the inflammation. It is painful and uncomfortable, it affects my vision when really bad. I also understand the sentiment about different doctors giving different answers. I have basically come to the same conclusion as you and that my immune system in general is on high alert right now. Hopefully it'll calm down with some time. I am finally starting to feel a bit better generally, so I really do have some hope.

[Awol cast iron stomach]

I had been put on prednisone in past prior to diagnosis due to chronic inflammation. Again  this was prior to my initially attempting gluten-free and my subsequent  challenge/ intolerance diagnosis years later. 

I was not  on prednisone after diagnosis. I did have a rheumatologist offer to give me cortisol for the chronic lower back pain inflammation I had during testing, but I refused. 

I followed my immunologist's casual aside suggestion to see if acupuncture would help. I also found fresh ginger and Apple cider vinegar helpful and focusing on anti inflammatory whole food diet. Also I have been a long time fan of Epsom salt baths.

Although I've been strict gluten-free since 2016 and noted my other food intolerances, my innate immune system is trigger sensitive to some environmental things I can not always avoid being human in the modern world. I try to help manage my immune system with diet, ginger, acv, epsom salt baths, regular exercise, ( when first healing I could initially only walk for exercise), regular sauna use, and acupuncture visit when the flare is not managed with the above routine maintenance. 

Most people who know me post diagnosis, know raising my children and keeping my immune system happy became my full time job. My career is how I contribute to our family budget to pay for it. My immune system also hijacked my husband's life too, I am fortunate the only gluten containing food he longs for is beer. I am grateful to Daura Damm it is an essential staple that supports this union.

It's a personal decision, but for me I found that it was best to go off everything ( "cancel" all the "white noise" ie meds otc relief etc . I just let my body process everything and establish baseline being strictly gluten-free on a whole foods diet as the veterans on the forums taught me. I did take supplements after I was able to handle the ingrediants.

Best wishes on your journey and healing 

[Awol cast iron stomach]

On 3/11/2020 at 4:21 PM, cyclinglady said:

 If anyone lived through six months of hives or had Dermatitis Herpetiformis, they would understand.

True indeed. It also helps one maintain a whole foods diet, or determine which gluten-free processed foods condiments ones body says are "ok"

[agentace]

Thank you so much for your response Awol! It is so helpful to hear others' experiences. I am of a like-mind and call what you refer to as "white noise" as "variables" in my journey to healing . I've been trying to eliminate them and not introduce any more so that I can pin this thing down! Hoping my inflammation will go down soon. ?

[JunebuginJuly]

I have celiacs and Addison’s (autoimmune primary adrenal insufficiency). I take about 20mg hydrocortisone daily as a replacement for the cortisol my body no longer makes. I take more sometimes in stressful circumstances, when I’m sick, or for intensive exercise when a healthy body would have ramped up cortisol production naturally. I literally cannot live without hydrocortisone. Within 24 hours of not taking it, my blood pressure would drop so much I would no longer be able to stand and I would be at risk of coma and death, a condition called adrenal crisis. 
 

I have a love-hate relationship with steroids. On one hand, I gained 70lbs in the first two years I was taking it. On the other hand, before I started taking it I could barely function. Hydrocortisone  give me my life back. 
 

After having an accidental exposure to gluten today (I’ve been strictly gluten-free for 8 years with occasional small, accidental exposures. I usually react so negatively to small exposures I don’t understand how anyone would want to “cheat”!) I decided to experiment on myself and took an extra 5mg pill to see if it would minimize inflammation and symptoms. So far it seems to help a lot, and I’ll definitely try more experimentation as time goes on. I don’t think I’d be willing to deliberately dose myself with gluten to treat it with extra steroids without a doctor’s supervision, perhaps as part of a study, but it seems to me that steroids could be very promising in reducing pain and inflammation and perhaps long term damage. 
 

I completely understand why most people wouldn’t want to mess around with steroids. Long term use does have serious consequences such as weight gain, osteoporosis, and shrinking the adrenal glands (and I can assure you, what these glands do are really important!). I can imagine that some people might see a prescription for steroids to use as needed for gluten exposure as a license to have that slice of cake.  But I’d love to see a study done on this. 
 

If your doctor prescribes steroids, I would not dismiss it out of hand. Small doses can make a big difference when it comes to the body’s inflammatory response, in my experience, and most people loose the weight they gained on steroids within 6 months of when they stop taking it. As long as you’re not taking it long term it won’t effect your adrenal glands or bone density.