Jump to content
  • 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):

Maintenance


casnco

Recommended Posts

casnco Enthusiast

Hi, I was wondering, after being off gluten for over 3 years, should I see a specialist when my symptoms reoccure? Such as with an accidental glutening? Does anyone on this board see a specialist for maintenance?


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



Celiac.com Sponsor (A8-M):



ENF Enthusiast
Hi, I was wondering, after being off gluten for over 3 years, should I see a specialist when my symptoms reoccure? Such as with an accidental glutening? Does anyone on this board see a specialist for maintenance?

When I hit three years gluten-free, I'll probably get evaluated again by endoscopy, biopsy, bone density test, etc. As far as glutening, I don't think there is anything the doctors can do for you when this happens. I'm recovering from a bad bout of it myself right now.

Generic Apprentice

If you get a severe reaction from glutening, they can give you steroids. They work like a miracle. It happened once to me.

casnco Enthusiast
When I hit three years gluten-free, I'll probably get evaluated again by endoscopy, biopsy, bone density test, etc. As far as glutening, I don't think there is anything the doctors can do for you when this happens. I'm recovering from a bad bout of it myself right now.

ENF: Your probably right about not being able to anything for us when we get contaminated. Percoset help eleviate the cramping but I don't know any doctor that would prescribe a narotic for prn use. Tee! Hee! I had some left over from my gall bladder surgery and was able to use one when I felt the cramps coming on. I know once they start I can't hardly swallow my own saliva let alone a pill.

Did you read somewhere that you should be retested or is this something you would like to do for peace of mind?

casnco Enthusiast
If you get a severe reaction from glutening, they can give you steroids. They work like a miracle. It happened once to me.

Generic: I just did a steroid taper and a shot of steroid, I cant remember the name right now. They worked great for a short peroid of time but once they were out of my system the itching came right back. Boo Hoo! How long do you do the steroids for and how much do you take?

ENF Enthusiast
ENF: Your probably right about not being able to anything for us when we get contaminated. Percoset help eleviate the cramping but I don't know any doctor that would prescribe a narotic for prn use. Tee! Hee! I had some left over from my gall bladder surgery and was able to use one when I felt the cramps coming on. I know once they start I can't hardly swallow my own saliva let alone a pill.

Did you read somewhere that you should be retested or is this something you would like to do for peace of mind?

Drugs don't really help with glutening - at least the type of symptoms that I had.

As far as getting retested, I've had blood tests since going gluten-free, and the results have been negative - but I know that I've been glutened by BEANO, and the test didn't show any elevated antibodies, possibly it was too little to come out. That test was performed by my GP, not a gastroenterologist.

I would like to get another endoscope and biopsy to see if there is a noticeable improvement in the villi, since it was moderately bad when I first got one for Celiac. In Dr. Peter Green

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,075
    • Most Online (within 30 mins)
      10,442

    Nan7472
    Newest Member
    Nan7472
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
×
×
  • Create New...