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 Isn't The Culprit


ElenaDragon

Recommended Posts

ElenaDragon Explorer

The results from my celiac panel blood test came back negative, but I decided to try the gluten free diet anyway. I went completely gluten free for 2 months, and I did feel better. However, at the end of those two months (a week ago), I started eating gluten again to test whether or not it was the lack of gluten that was helping me. I have been eating cream of wheat, wheat crackers, whole wheat english muffins, and french bread... at least 2 items per day.

For the first two days I felt fine, no changes. Then I ate a small sub sandwich with only turkey, lettuce, tomato, onion, and a little vinegar, followed by a slice of boysenberry pie a little later. A short while after eating the pie, the gas symptoms began (gurgling in my intestines, and later gas and mucus instead of stool coming out). I don't think it was the gluten that started this... is there usually dairy in fresh bread or in pie crusts? I have been dairy free for many months, but I wonder if maybe I was being more diligent about it when I was avoiding gluten as well (since I had to read all the labels anyway). I am also mostly off of soy and haven't had any in the past week. I had some symptoms that day and the next, and then for the past few days I've been fine again (still eating wheat). So it seems that gluten is not giving me problems.

I know before I started the gluten free diet, I would react after eating foods that did not have dairy in them. Maybe my intestines were just irritated in general? Also, just before starting the gluten free diet I also started taking some probiotics. I suspect that they may have something to do with feeling better.

One thing I would like to do is test whether it is the lactose or casein that may be causing me problems. I have been avoiding both. From what I understand, hard cheeses like cheddar have little or no lactose in them? Also, yogurt is generally easier to digest than some other dairy sources like milk? Can anyone suggest a plan for testing lactose/casein intolerance?


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



Celiac.com Sponsor (A8-M):



hathor Contributor

Well, you can have some lactose-free milk or regular milk and a Lactaid pill. If you have problems, it is probably from casein. If you are fine, then try regular milk by itself. A reaction would then mean it is the lactose.

Yes, a lot of bread does have some dairy in it. Pie crust often has butter.

If you have only had problems following this one meal, definitely investigate further. You could have had a touch of a 24 hour stomach bug or food poisoning and not be intolerant to anything. Indeed, it could have been that the probiotics cured whatever was wrong with you before.

No way of telling anything for sure without additional data. Sorry to say you are the experimental subject :o

gfpaperdoll Rookie

Have fun & enjoy your gluten while you can. Please keep us posted periodically on how you are doing!!!!!

bethb Newbie

After I went gluten-free, I started keeping a food journal. I noticed that I would have intestinal symptoms after eating dairy, so I cut it down, but not out. I determined I must be lactose-intolerant and since I LOVE cheese I got some lactase enzyme (the lactase) that breaks down lactose. Taking those seemed to help but not solve my reactions...

I just got my IgG food allergy tests back and it said I was allergic to casein and eggs. So that explains why the lactase pills weren't totally working.

Unfortunately, even soy cheese and almond/nut-based cheeses seem to all have casein. Does anyone know of a "cheese" that doesn't have casein?

Dairy (casein, lactose, etc) can show up in food products, under other names, such as whey. So be sure to read the labels if you want to do the food trial and errors. Now that I'm shopping casein-free, I'm surprised at some of the products that have casein (some marinara sauces, for example).

Good Luck!

ElenaDragon Explorer

Well I'm still doing okay on gluten. However, I'm also still having reactions to something, and dairy is my top suspect. On Friday I ate a few small pieces of milk chocolate, and had the same gas reactions a few hours later (it feels like extra gas is getting produced in my intestines, which causes mucus to be produced as well, probably as a protective measure). But on Sunday night I had three slices of cheese pizza and only had a small reaction, which could have been from all the fat. So maybe it is lactose after all. I think I'm going to skip the lactose/whey/casein for a week or so, and then try some cheese again. If that goes well, I'll move on from there.

Oh, and I did find a soy cheese at Whole Foods which doesn't have casein. I think it's called Vegan Gourmet? I haven't tried it yet since I'm still wary of soy.

Archived

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

  • 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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

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

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • 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.      
×
×
  • 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.