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

Gluten Challenge: Tips?!


healinginprogress

Recommended Posts

healinginprogress Enthusiast

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)


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



Celiac.com Sponsor (A8-M):



domesticactivist Collaborator

I haven't done it, but I have a couple thoughts for you.

1. How long are they having you do the challenge before the biopsy? A few days is not enough for an accurate result.

2. Please record all your symptoms and what you ate in detail. That way if you can't stick with the challenge at least you'll have something to show your doctor.

Good luck!

ravenwoodglass Mentor

Keep a record of symptoms as the other poster stated. In addition if things get bad call the doctor's office and ask to speak with either the doctor or a nurse. They may need to call you back but most will. Then give them all the gory details if you are being woken up at night by the pain and D make sure they know that. Some doctors will advise you to stop the challenge if symptoms are severe.

Googles Community Regular

When I get glutened I get nausea for multiple days afterwards (once for 3 months). My doctor prescribed an anti-nausea med to help me be able to eat, as without it I couldn't keep food down. It helped a lot. You might want to look into that for the nausea. I was going to say make sure it is gluten free, but if you are on a challenge, that might not matter.

Monklady123 Collaborator

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

Googles Community Regular

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I don't know if this is why the OP is doing it, but, sometimes people need it for accommodations, like for school or work. Without an official diagnosis from a doctor they don't have to provide those. Also sometimes it is easier for people to stick to the diet when they have an official diagnosis as it is so challenging. It is easier for some people than trying to wonder if it could be something else possibly. Also sometimes family is more accepting with an official diagnosis, and don't question that it is "in the person's head".

love2travel Mentor

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I put myself through the challenge because gluten did not make me sick at all. Nil. So, I truly did not believe I had celiac until the biopsies came back positive. So, I needed it to prove that I have the disease otherwise I likely would not have done anything about it. I frankly LOVED the challenge, getting to eat all the yummy gluten I wanted to for three whole months. I made a gigantic list of my favourites and crossed them off as I had them one last time. If I felt terrible on gluten it would likely be a very different story.


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



Celiac.com Sponsor (A8-M):



healinginprogress Enthusiast

Thank you for the responses! Now, I am not a quitter, so I feel a little like I "wimped out", but the intensity of my migraine the 3rd morning definitely changed my mind about the "challenge". I will call the doctor on Monday and see what he says. He did, after all, give me the option. And if I was asymptomatic then I could see staying on the challenge for sure. But I puked so many times yesterday that my throat is sore and that's just not healthy. The pain and the fatigue are not worth it, either. After they do the colonoscopy/endoscopy they are scheduling me for surgery, so I'm going to need to be as healthy as possible going into that. I think this is all the proof I need that I am indeed Celiac!

Why did I want the definitive diagnosis? I'm the type of person who needs to KNOW things. I thrive on information, numbers, facts...not so much theories and probabilities. I like certainty. I know life isn't about certainty, it's just what makes me comfortable. I feel weird saying I have Celiac Disease when I don't have the data to back it up, aside from a very positive blood test and very telling symptoms. I just graduated from university, so I guess I'm used to having to prove things.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...