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

Reintroducing Wheat


Billygean

Recommended Posts

Billygean Apprentice

Hi all

Not sure if I'm celiac or not. Blood tests were negative. I had chronic fatigue following mono which was improving before the gluten free diet and continued to improve during. The recovery has sped up but my doctor said this is normal for a chronic fatigue recovery as you get stronger.

Obviously I'd like to know if I can eat wheat. When you reintroduce it - if you are NOT celiac - do you still have to do it slowly, like with dairy, or should I just get a bread bun and eat it!

Billygean


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

If you are going to challenge yourself, then you need to eat the equivalent of 1-3 slices of bread, per day, for at least a week. The closer you can get to eating wheat, barley or rye in it's most natural form, the better. If you eat something overly processed, it could be something else you are reacting to.

We don't always have immediate reactions, or even react to an accidental glutening, which is why if you are going to challenge yourself, you need to ingest it daily for a week or two.

Keep us updated!

Billygean Apprentice

So is it fair to say if someone is not celiac they can reintroduce a lot of wheat at once without many/any symptoms?

gfpaperdoll Rookie

Well, I am gluten intolerant with double DQ1 genes. So I can only speak for myself & maybe the other people that have double DQ1.

I can never eat wheat, rye, oats, or barley again. Unless, I want to kill myself. I have been gluten-free for 4 1/2 years, the best years of my life, so far. I am not going back to half a life. I do not care what any doctor says or thinks, I know what I know. & no, I cannot eat any so called gluten-free oats. I am also allergic to oats. I do not eat soy because I think it is unfit for human consumption. I have strong opinons about what I include in my diet. I do not need confirmation or agreement from anyone else.

I have an extremely difficult time with cross contamination. I also cannot eat grains. A gluten-free grain like corn or rice or the occasional gluten-free home baked treat is a "cheat" for me. I know why, since I recently had the full panel on my mtDNA run.

aikiducky Apprentice
So is it fair to say if someone is not celiac they can reintroduce a lot of wheat at once without many/any symptoms?

I think it depends on what you have been eating to replace it. If your diet has been low on fiber, for example, and you suddenly eat a lot of whole wheat in some form, the increase in fiber might be uncomfortable. And any sudden change in eating habits might give you some digestive symptoms, but I'd think that would pass in a couple days if it's just from changing your diet and not from an actual intolerance. I think. :)

Pauliina

lizard00 Enthusiast
I think it depends on what you have been eating to replace it. If your diet has been low on fiber, for example, and you suddenly eat a lot of whole wheat in some form, the increase in fiber might be uncomfortable. And any sudden change in eating habits might give you some digestive symptoms, but I'd think that would pass in a couple days if it's just from changing your diet and not from an actual intolerance. I think. :)

Pauliina

Yeah, I would agree. If your diet was overall low in fiber, an increase would be uncomfortable. People have varying levels of sensitivity within the world of celiac/gluten intolerance. It greatly depends on your body and your level of sensitivity as to how fast you can determine for sure if gluten is a problem for you or not.

But if you're used to fiber, and you're up for it, get some bulgur and cook it. Eat it like you would rice... wouldn't be much room for doubt with something like that.

I hope you figure it all out!

Amber M Explorer
Hi all

Not sure if I'm celiac or not. Blood tests were negative. I had chronic fatigue following mono which was improving before the gluten free diet and continued to improve during. The recovery has sped up but my doctor said this is normal for a chronic fatigue recovery as you get stronger.

Obviously I'd like to know if I can eat wheat. When you reintroduce it - if you are NOT celiac - do you still have to do it slowly, like with dairy, or should I just get a bread bun and eat it!

Billygean

Well, were you gluten free when you had the blood test? I was, and it came out negative. Plus I found out I had an outdated test! The challange diet showed me the truth! I got sicker than a dog with many things including neurological symptoms along with digestive. Did you have a endiscope with biopsy? That can come out negative if you have been gluten free too. The "gene and stool test" at Entrolab in Texas I hear is the best. I am awaiting results now. Good luck, you will know soon hopefully. If you are a Celiac, it would be very dangerous to keep eating it. What got you tested to begin with?


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



Celiac.com Sponsor (A8-M):



Billygean Apprentice

Hi all

Thanks for the advice.

Reason I got tested is I was bedridden for 6 months following mono. A cousin had the same symptoms and was diagnosed celiac. My test (pre gluten free) was negative but I thought I'd give it a go at the time because I was so desperate.

I did have some digestive problems before the diet but they've pretty much remained. As I said, chronic fatigue is fading slowly but that's common after mono anyway.

I'm going to try a slice of bread later today when my dad gets home from work for moral support, I'll keep you all posted!

BG

Mom2Twins Rookie

I tested positive on my bloodwork in May, went gluten free for two months, and then did a gluten challenge for two months prior to my endoscopy.

Everyone is different, but I can say in my case, I don't respond immediately to gluten. It took me about a week of eating gluten every day to respond with gastro symptoms. In fact (silly me) I started to question whether I was *really* celiac since I have read a lot of horror stories about glutenings.

My point is that if you do have issues with gluten, it may take a week or even more to start reacting. Also, some of my reactions are not gastro. I get depressed and have severe PMS when I eat gluten. My PMS magically disapeared when I went back to gluten free. I also get a horrible eczema-type rash on my arms, which has also cleared up. My sinuses get very congested on gluten. I get migraines. I mention this, because I had NO IDEA these symptoms were due to gluten, until I went gluten free, challenged myself, and then went gluten free again.

Also, be warned. If you ARE gluten sensitive, and have been gluten free, you may respond more severely to gluten than you did before. Sorry if TMI, but I was so ill after two months on gluten, I was in the bathroom over 30 times on the day of my biopsy.

Please keep us posted.

Billygean Apprentice

Thanks for all the info.

I suppose the big thing for me is that there is no evidence I'm celiac. Chronic fatigue following a bout of mono is pretty common, which was pretty much my only symptom.

So far I've had two slices of bread and a burger and I feel fine. I did get a headache and some wind but I think I was sort of on high alert looking for my symptoms.

I will continue for a while and if I get sick I will reassess!

BG

  • 1 month later...
Billygean Apprentice

Well - I reintroduced wheat.

I was bedridden for a month after that slice of bread and a burger.

I think we have our answer.

I went to doctor and told him this as a celiac family member of mine told me he should diagnose. He's ordered a blood test and biopsy even though I'm gluten free and unwilling to eat gluten for the sake of a diagnosis! Siiiigh!

  • 1 month later...
Hardeep Newbie

I was wondering about this exact thing. I will be having a gastroscopy in early march and wanted to go back on eating gluten (been gluten free since start of dec 08). I found that even eating a small piece of wheat (a shreddies cereal piece) would cause pain a few minutes after on the right side of my body, beneath the ribcage. The pain would then move to the left side eventually. I ate single pieces of shreddies for a few days, then increased to more wheat slowly. The pain has gone away (though I have a general feeling of unwellness now).

I didn't know whether experiencing this type of pain upon suddenly introducing wheat was normal or if maybe it was because of some intolerance (or celiac).

ravenwoodglass Mentor
I was wondering about this exact thing. I will be having a gastroscopy in early march and wanted to go back on eating gluten (been gluten free since start of dec 08). I found that even eating a small piece of wheat (a shreddies cereal piece) would cause pain a few minutes after on the right side of my body, beneath the ribcage. The pain would then move to the left side eventually. I ate single pieces of shreddies for a few days, then increased to more wheat slowly. The pain has gone away (though I have a general feeling of unwellness now).

I didn't know whether experiencing this type of pain upon suddenly introducing wheat was normal or if maybe it was because of some intolerance (or celiac).

I can't say anything for sure about you of course, but I get a pain similar to that when I get glutened. How long have you been doing the challenge?

Fiddle-Faddle Community Regular

Unless the doctor has good reason to suspect something OTHER than celiac to look for in an endoscopy, there is no need for an endoscopy, unless you feel like padding his bank account. As you said, you have your answer.

The endoscopy/biopsy was deemed the "gold standard" of celiac diagnosis 50 years ago, before the blood tests used today were developed. I believe that the reason doctors are still using it as the so-called "gold standard" is pure and simple: $$$.

They don't make a penny if you change your diet.

That said, I do have a friend who is a GI doc, who uses the biopsy as the "gold standard" of diagnosis because he believes that "a lifelong gluten-free diet is too difficult to adhere to if not strictly necessary." Needless to say, I strongly disagree with him, but have failed to convince him of my viewpoint!

So I guess you could say that either doctors are greedy or ignorant, but either way, they just don't get that most of us are happy simply to be relieved of symptoms, and happily adhere to a strict gluten-free diet.

Hardeep Newbie

Raven: I've been doing the challenge for little over a week now. That pain that I described went away after slowly increasing gluten intake. Now I just feel generally unwell after meals containing wheat (or those that are particularly oily).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Related issues

    5. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      23

      Headaches / Migraines and Hypoglycaemia


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,149
    • Most Online (within 30 mins)
      7,748

    dvyoung
    Newest Member
    dvyoung
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong. While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that. I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.
    • knitty kitty
      Some people have difficulty processing tyrosine.  Cut out the nuts and cheese and see if there's any difference.  Everyone is different. This study shows that tyrosine can affect our brain with detrimental effects as we age. Neuro-Cognitive Effects of Acute Tyrosine Administration on Reactive and Proactive Response Inhibition in Healthy Older Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6084775/ "In conclusion, we show age-related effects of tyrosine administration especially on proactive, not reactive, response inhibition, accompanied by signal changes in dopamine-rich fronto-striatal brain regions. Specifically, we observed that tyrosine’s effect on brain and cognition became detrimental with increasing age, questioning the cognitive enhancing potential of tyrosine in healthy aging."
×
×
  • 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.