Jump to content

  • 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

Dr. Prescribed Huge Daily Dose Of Zinc

Rhobhan

By Rhobhan
in Coping with Celiac Disease

Recommended Posts

Rhobhan Apprentice
Rhobhan
Posted

I have had a resurgence of symptoms since being diagnosed 8 years ago. I am losing weight, and I have daily diarrhea, fatigue, and slight nausea at times. A gastroenterologist I saw last year at this time did a CT enterography, an enduoscopy and pill camera, and was satisfied I had no signs of lymphoma. His prescription was a daily dose of prednisone and telling me to "live life."

 

This time I am seeing a new gastroenterologist who has and will end up repeating all the tests I had last year. He wants  a "snapshot" of current conditions. He seems more committed to getting to the reason for the symptoms. I hope so, otherwise I will truly be a skeleton before long!

 

The CT scan was "unremarkable," and the push endoscopy revealed, in his words, that I have an "active case of celiac disease."Biopsies were taken, and I am awaiting results. I have been religious about cross contamination and eating non-processed foods containing no gluten.

 

The doctor said a blood screen showed I was very low on zinc, and he prescribed a daily 220mg dose which he said should help with the diarrhea. I am only on my second dose, so I have no results to report.

 

My question: Have any of you had any experience with such a mega-dose of zinc?

 

Any comments or thoughts are welcome.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Did he run a celiac antibodies test too? Intestinal damage could be from causes other than celiac disease. Look at this link to the University of Chicago's celiac website:

Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree with the previous poster that if a celiac panel hasn't been run it should be. If it is or was run and was positive then there are a few things that you should evaluate.

Is there any new med or supplement you may be taking that may not be gluten free? Are you eating any gluten-free oats? Some of us don't tolerate them. How about any of the beers that have 'gluten removed'? Pets that eat non gluten free foods? A significant other that isn't gluten free that could be CCing you with kisses?

I hope you can get down to the cause of this soon.

HannahZ Newbie
HannahZ
Posted

I'm curious, how low was your zinc level, if you don't  mind sharing? Mine was recently tested and found to be low at 50, with reference range for normal starting at 60. I had some trouble with the supplements, as they made me sick. I am taking a lower dose than the prescribed amount since I couldn't keep the zinc down at the prescription dose.

Rhobhan Apprentice
Rhobhan
Posted
  • Author

Did he run a celiac antibodies test too? Intestinal damage could be from causes other than celiac disease. Look at this link to the University of Chicago's celiac website:

Open Original Shared Link

Yes, a celiac antibodies test was run, and the results were negative. That means I have not been exposed to gluten recently. Recall that I was diagnosed 8 years ago with the antibodies test, colonoscopy and EGT.

Rhobhan Apprentice
Rhobhan
Posted
  • Author

I'm curious, how low was your zinc level, if you don't  mind sharing? Mine was recently tested and found to be low at 50, with reference range for normal starting at 60. I had some trouble with the supplements, as they made me sick. I am taking a lower dose than the prescribed amount since I couldn't keep the zinc down at the prescription dose.

I do not recall what the actual level was, other than his remark that it was extremely low. I take the 220mg dose with food and haven't noticed any additional stomach upset. After four doses, my diarrhea is slowly decreasing and I have actually had a couple of good days. Have you tried taking it with a full meal. I'm sure it may decrease the absorption, but I sure as hell didn't want to feel sicker than I have been!

Rhobhan Apprentice
Rhobhan
Posted
  • Author

I agree with the previous poster that if a celiac panel hasn't been run it should be. If it is or was run and was positive then there are a few things that you should evaluate.

Is there any new med or supplement you may be taking that may not be gluten free? Are you eating any gluten-free oats? Some of us don't tolerate them. How about any of the beers that have 'gluten removed'? Pets that eat non gluten free foods? A significant other that isn't gluten free that could be CCing you with kisses?

I hope you can get down to the cause of this soon.

I am not getting any gluten, as I am obsessive about checking EVERYTHING that goes into my mouth and on my skin. gluten-free oats are not a problem. On the occasion I have them they cause no problem. And my wife doesn't kiss me when she's eating! All meds and supplements are checked out as well. My dog eats a food that does not contain wheat. Thanks for your thoughts.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Yes, a celiac antibodies test was run, and the results were negative. That means I have not been exposed to gluten recently. Recall that I was diagnosed 8 years ago with the antibodies test, colonoscopy and EGT.

Was the complete panel run? I ask because I only test positive to the DGP IGA and never to the TTG (I was recently glutened and asked for a re-test). Otherwise, something must be causing villi damage if your antibodies are negative.

Archived

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

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


  • Member Statistics

    • Total Members
      131,705
    • Most Online (within 30 mins)
      7,748
    Lyana Chahine
    Newest Member
    Lyana Chahine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.