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

Gluten Challenge: Tips?!

healinginprogress

Recommended Posts

healinginprogress Enthusiast
healinginprogress
Posted

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
domesticactivist
Posted

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
ravenwoodglass
Posted

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
Googles
Posted

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
Monklady123
Posted

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
Googles
Posted

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
love2travel
Posted

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
healinginprogress
Posted
  • Author

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Reverse Osmosis (RO) Water

      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter. Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions. Steam distilled water is safe. Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe s...
    2. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not s...
    3. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Water filters are a potential problem for Celiac Disease

      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten. I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain...
    4. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly. A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly. It's very rare to have only one or two low vitamins in Celiac Disease. B vitamins are water soluble, so any excess is easily excreted...
    5. knitty kitty
      - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      39

      Blood results

      I'm so glad your daughter got her B12 level checked at last!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,570
    • Most Online (within 30 mins)
      7,748
    Chanty
    Newest Member
    Chanty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • YoshiLuckyJackpotWinner888
      Reverse Osmosis (RO) Water

      By YoshiLuckyJackpotWinner888 · Posted

      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter.  Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions.  Steam distilled water is safe.  Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe so far.
    • YoshiLuckyJackpotWinner888
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By YoshiLuckyJackpotWinner888 · Posted

      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not sure if the casein was worse or the naturally occurring cheese mold in aged cheddar did it. I am IgG sensitive to yeast. Casein, yeast, or mold in the cheese might have been part or equally bad.
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten.  I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain which I am now aware of. If I purposely expose myself to gluten, I seem to have antibodies attack certain areas of my body which cause this reaction within 30 minutes of exposure. I can tell rather quickly if I was exposed and it never happens, unless gluten is present. In the past 5 years since my diagnosis , I may have noticed occasional pains or odd sensations after drinking bottled water that was filtered.  It never made sense to me why this was happening.  A few months ago I was at a gas station and purchased a Gatorade filtered water bottle product. Within 30 minutes, I had pains associated with gluten exposure that I had not felt for years. I knew it had to be the water bottle contents because nothing else was consumed all day. This was a wake up call for me. I searched and found out a thread about water filters containing starch binders to bind charcoal, which is used commonly, and I found out that grains are potentially used for the starch source.  Gluten is in certain grains, and according to a study in the past two years, many grain proteins and casein from dairy can cross react with celiac. This Gatorade water bottle had water that was likely filtered with a filter that may have had actual gluten. I am also sensitive to the other cross reactive proteins from grains and casein, but the pains that day were distinct. I can absolutely tell the difference if I come into contact with corn or other grains. The reaction is different. My point is bottled water that has been filtered can potentially be exposing us, if they use starch binders from grain products. We have no real practical way of knowing what water filters may have inside of them, unless a law requires disclosure on the label. This is not only going to affect bottled water, but also all products that were made with filtered water. Since cross reactions to other grain proteins is now a real issue, simply stating  gluten free is not enough. How can you know if your store bought lemonade does not have filtered water with gluten or other grain protein contamination?  Did that kombacha you just drank happen to have filter contamination of corn and you suddenly feel a headache and odd chest pains? Distilled water may be the only safe bottled water. We can’t trust water filters until the law changes and requires processing plants to disclose these contaminants.  I don’t ever have a problem with distilled water as long as it was steam distilled.  Regular bottled water has set off noticeable sensations and pains over 5 years of observing these. The Gatorade water was the worst and most alarming.  Stay safe. 
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly.  A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly.  It's very rare to have only one or two low vitamins in Celiac Disease.  B vitamins are water soluble, so any excess is easily excreted in urine.  Tingling in feet and hands is symptomatic of deficiencies in B vitamins like thiamine, Pyridoxine, and niacin. September 19 2025, "Your daughter needs to be checked for Vitamin B12 deficiency as soon as possible!   The nitrogen compounds in anesthesia can precipitate a B12 deficiency resulting in severe depression.  Please have her checked immediately! The nitrogen compounds in anesthesia (both gas and injected anesthesia) bind irrevocably with the Cobalt in Cobalamine Vitamin B12.  This precipitates a B12 deficiency in people with a low B12 level.  This can happen immediately, within days or weeks or months depending on B12 stores.    I've had medical procedures that required anesthesia and been struck down by deep dark depression and uncontrollable crying immediately, and also within weeks of the exposure.  My doctor put me on antidepressants which only made things worse.  Antidepressants don't correct a vitamin deficiency.   Please have her checked for B12 deficiency as soon as possible!"  
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      I'm so glad your daughter got her B12 level checked at last!  
×
×
  • 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.