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

darkhorse

Recommended Posts

darkhorse Apprentice
darkhorse
Posted

I was tested for celiac disease (kinda) by a doctor who didn't know anything about it other than I "didn't want it." He only ordered two of the blood tests and I don't remember the name of them. I didn't see the results, but supposedly they came back normal. I decided to eliminate gluten (and then quickly realized I also needed to eliminate diary) and the results speak for themselves. I have many of the symptoms including all the gastro symptoms and this "stomach problem" runs on the women's side of my family. My mom refuses to get tested because she doesn't want to commit to the diet even though she has had stomach surgeries and is severely anemic, but that is another issue.

I went around my doctor and scheduled an appointment with a GI doctor in town (Dr. Lewey, a contributer to this site) and the appointment is for May 5th. I have been gluten free for a little over two weeks, but I would like to get tested for celiac by someone who knows what they are doing. I am also fine doing the biopsy if that will help. The problem is that I need to go back on gluten in order to be tested, but I feel so good I really don't want to. I keep thinking that I will wait until my appointment, but at that point I will have been gluten free for just about a month.

If I need to do a gluten challenge, would it be better to start eating gluten now and so as to minimize my time off of gluten? Do you think I would need to do a shorter challenge that way? My other thought is to wait until my appointment, but then I would need to do a longer challenge right?

I personally don't really need an official diagnosis, because I will never eat gluten (and possibly dairy) again. My mind is made up on that point, but my mom and possibly my sister are suffering from this as well and I think they would take it more seriously if I were to get an official diagnosis.

Any thoughts on this would be appreciated. :unsure:

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

For any chance of the testing to come out accurately you need to get back on gluten today. Even then you may still have a false negative. Do note how you are feeling now and I would note in detail your symptoms when you go back on gluten. Chances are you are in for some miserable days but you have no chance of being diagnosed if you are gluten free or gluten light.

darkhorse Apprentice
darkhorse
Posted
  • Author

I have already started a food journal and I am tracking my symptoms this whole time I was off gluten and dairy. I am planning on going back on gluten today, but it is really depressing to think about it. :( Actually, I was thinking about it all day and I keep putting it off. I was going to start this morning, but then I didn't want to feel bloated for a fitness class I have on Tuesdays. Then I was going to do it after the class, but I keep putting it off again and thinking that I will start tomorrow... I'm really having a hard time pushing myself to do this. A month ago I would never have guessed that I would be finding any excuse to NOT eat my two favorite foods: bread and cheese.

I tried calling the Dr today, but because of my schedule at work I could never catch him when he was not with a patient. Oh well, guess I better buck up and start eating... <_<

I just hope this is actually worth it and I get some kind of result other than feeling crappy. I'm also hoping that starting it now will let me do a shorter challenge. We'll see.

  • 3 weeks later...
Libbyanne Newbie
Libbyanne
Posted
I have already started a food journal and I am tracking my symptoms this whole time I was off gluten and dairy. I am planning on going back on gluten today, but it is really depressing to think about it. :( Actually, I was thinking about it all day and I keep putting it off. I was going to start this morning, but then I didn't want to feel bloated for a fitness class I have on Tuesdays. Then I was going to do it after the class, but I keep putting it off again and thinking that I will start tomorrow... I'm really having a hard time pushing myself to do this. A month ago I would never have guessed that I would be finding any excuse to NOT eat my two favorite foods: bread and cheese.

I tried calling the Dr today, but because of my schedule at work I could never catch him when he was not with a patient. Oh well, guess I better buck up and start eating... <_<

I just hope this is actually worth it and I get some kind of result other than feeling crappy. I'm also hoping that starting it now will let me do a shorter challenge. We'll see.

Hi Darkhorse!

Any chance you can update us on what you decided as far as going back to gluten or if you've had your tests? I am in the same boat - been gluten free for 3 weeks but recently started to add it back in so I can get tested. At first I was excited to eat pizza again (I hadn't made it far enough to bake my own gluten-free pizza yet) but now I find myself avoiding gluten foods because of all the reactions I have. I very much want an answer but I also want to know how long I need to go back on gluten for! It's especially hard after I've told people around me that I'm not eating it and if they see me eating it I feel like they will disregard me as a hypochondriac who just wants attention <_< . That is so far from the truth...I just want to know for sure so I can stop worrying that it might be something else AND like you I would like my sisters to get tested as I see a lot of my symptoms in them...

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA 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
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.