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

Challenging Gluten

jswog

Recommended Posts

jswog Contributor
jswog
Posted

I know you all will understand. Due to IDIOT doctors, I have no definative diagnosis. I've been doing a through elimination diet and have been gluten free since Sept. 14th. I'm almost finished challenging all of the many things I've removed, with the only thing so far that's given me issues being eggs. However, I know I will have to challenge gluten very soon. Fortunately, my OBGYN NP has referred me to an RD as of this past Friday, so I'm planning to hold off on the gluten challenge until I'm working with her. But... For right now, I'm sitting up at 3am, not able to sleep, worrying about knowing that I will HAVE to make myself sick very soon. :(

Jen

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

Celiac.com Sponsor (A8-M):


GlutenDude Newbie
GlutenDude
Posted

I'm not sure I understand. Instead of guessing, why don't you just get tested for celiac?

jswog Contributor
jswog
Posted
  • Author

I'm not sure I understand. Instead of guessing, why don't you just get tested for celiac?

I had an EGD during which the GI was SUPPOSED to take biopsies to test for Celiac, but because (and I AM quoting here) he "didn't SEE any damage," he decided he didn't need to take any. I did't find that out until TWO weeks later when I had my follow-up appointment with his nurse practitioner after I had been gluten free for a full two weeks (went gluten free IMMEDIATELY following the EGD). So now I cannot get testing done without going back to eating gluten for 3-4 months!

ravenwoodglass Mentor
ravenwoodglass
Posted

If your symptoms have improved gluten free then no one can force you to challenge for the 3 to 4 months needed for a biopsy. Did you have positive blood work? If you did then personally I would only challenge until I reacted and skip the biopsy.

jswog Contributor
jswog
Posted
  • Author

If your symptoms have improved gluten free then no one can force you to challenge for the 3 to 4 months needed for a biopsy. Did you have positive blood work? If you did then personally I would only challenge until I reacted and skip the biopsy.

I guess maybe I didn't say things clearly. My symptoms have improved GREATLY since going gluten free and I have ABSOLUTELY NO INTENTION of going back on gluten for 3-4 months to try to do another biopsy or bloodwork. Bloodwork was not done as I was already gluten free when I found out that the biopsies had NOT been taken like they were supposed to have been. An elimination diet requires you to re-introduce (ie: CHALLENGE) each possible trigger and then chart what, if any, symptoms come back with each one. Since the medical profession failed me in such a profound way that I could not get the 'official' diagnosis, I am now left with no option but challenge gluten and document the symptoms it gives me.

Skylark Collaborator
Skylark
Posted

Or you could just skip the challenge, figuring the inevitable mistake on the diet will serve as a challenge. ;)

jswog Contributor
jswog
Posted
  • Author

Or you could just skip the challenge, figuring the inevitable mistake on the diet will serve as a challenge. ;)

While I have thought of that, I want to make sure it is so totally black and white for the idiot doctors. I want to have all other variables out of my diet so that the ONLY thing it even possibly could be that made me sick was GLUTEN. No ifs, ands, or buts. There cannot be any gray areas whatsoever, no 'well, are you sure it wasn't something else you could have eaten?'. I *know* I got glutened at Texas Roadhouse the other night, but because these were 'gluten-free' options I ordered, the medical non-professionals could be left to question if it was gluten cc or was it something else I could have gotten. I HAVE to do this in a very intentional, scientific way in order to make it absolutely clear to these idiots! But I'm dreading it...

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

Celiac.com Sponsor (A8-M):


peeptoad Apprentice
peeptoad
Posted

While I have thought of that, I want to make sure it is so totally black and white for the idiot doctors. I want to have all other variables out of my diet so that the ONLY thing it even possibly could be that made me sick was GLUTEN. No ifs, ands, or buts. There cannot be any gray areas whatsoever, no 'well, are you sure it wasn't something else you could have eaten?'. I *know* I got glutened at Texas Roadhouse the other night, but because these were 'gluten-free' options I ordered, the medical non-professionals could be left to question if it was gluten cc or was it something else I could have gotten. I HAVE to do this in a very intentional, scientific way in order to make it absolutely clear to these idiots! But I'm dreading it...

I don't have an official diagnosis either, and probably won't ever, since my bloodwork was negative. I did a gluten-free trial and challenge and gluten is very clearly the cause of my GI problems. I told my doctor this, just to FYI him and he told me I may have a gluten sensitivity, but not necessarily celiac disease. That's good enough for me I guess... although it would be nice to know if gluten is actually damaging my body and predisposing me to cancer (if I happen to ingest it), but my doctor doesn't seem to want to do the EGD to biopsy. :unsure:

Skylark Collaborator
Skylark
Posted

Waitaminute. Why are you making yourself sick for the idiot doctors? I thought you'd given up on them. Tell them you don't eat gluten because it makes you sick. End of story.

sreese68 Enthusiast
sreese68
Posted

While I have thought of that, I want to make sure it is so totally black and white for the idiot doctors. I want to have all other variables out of my diet so that the ONLY thing it even possibly could be that made me sick was GLUTEN. No ifs, ands, or buts. There cannot be any gray areas whatsoever, no 'well, are you sure it wasn't something else you could have eaten?'. I *know* I got glutened at Texas Roadhouse the other night, but because these were 'gluten-free' options I ordered, the medical non-professionals could be left to question if it was gluten cc or was it something else I could have gotten. I HAVE to do this in a very intentional, scientific way in order to make it absolutely clear to these idiots! But I'm dreading it...

I did exactly this not only for the doctor, but also for myself. I needed to KNOW it was gluten causing my problems and not something else. Be sure to write all your symptoms down and save it in your computer. I was very surprised what mine were as I was expecting stomach issues and I ended up with neuro issues.

jswog Contributor
jswog
Posted
  • Author

I did exactly this not only for the doctor, but also for myself. I needed to KNOW it was gluten causing my problems and not something else. Be sure to write all your symptoms down and save it in your computer. I was very surprised what mine were as I was expecting stomach issues and I ended up with neuro issues.

I have been keeping a symptom/food journal since I started my elimination diet last month. I will keep a detailed log of exactly what gluten items I eat and what symptoms/when.

jswog Contributor
jswog
Posted
  • Author

Waitaminute. Why are you making yourself sick for the idiot doctors? I thought you'd given up on them. Tell them you don't eat gluten because it makes you sick. End of story.

I just feel that it needs to be proven that it is, in fact, gluten that is making me sick. And, no, I've given up on getting a clear diagnosis from the doctors, but considering the fact that I am trying to conceive right now, I quite frankly am going to need doctors. So I need to do this and document it prior to getting pregnant.

Skylark Collaborator
Skylark
Posted

I just feel that it needs to be proven that it is, in fact, gluten that is making me sick. And, no, I've given up on getting a clear diagnosis from the doctors, but considering the fact that I am trying to conceive right now, I quite frankly am going to need doctors. So I need to do this and document it prior to getting pregnant.

If you have to document it for YOURSELF, by all means do so. I'm all for science and I had to eat gluten a couple times and suffer the consequences to be sure of it. Good luck and I hope it isn't as awful as you fear!

You keep talking about "doctors" and I just don't think it's necessary to document an intolerance that you KNOW you have for anyone else by making yourself sick. My choice of foods is really not up to my doctor, or even his business as long as I'm eating healthy foods and not living on donuts and bacon.

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.