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

Crohns Patient New To Celiac

redspot321

By redspot321
in Coping with Celiac Disease

Recommended Posts

redspot321 Newbie
redspot321
Posted

Hello :D

I was diagnosed with Crohns in 2004, Have had more bad days then good days since diagnosis. 30 yo male 63cm bowel resection and have failed most treatments.

In my research I have found that many people with Crohns are sensitive to gluten, casin, and lactose. I am trying to eliminate these things from my diet and I AM feeling better!!

I was blood tested for Celiac and the test results were negitive. I was allergy tested for 60 common foods by blood and all was negitive. After years on dead ends I decided to tyr this diet eventhough all of my test results were negitive.

Has anyone else run into this kind of thing?

Also Ive been living off of Almond milk, rice checks, rice cakes, fruit, veggies chicken, fish, and yougart.

I have an occasional potato chip and plantain chip. Are all of these things Okay?

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

Celiac.com Sponsor (A8-M):


rinne Apprentice
rinne
Posted
....

Also Ive been living off of Almond milk, rice checks, rice cakes, fruit, veggies chicken, fish, and yougart.

I have an occasional potato chip and plantain chip. Are all of these things Okay?

Hi. :)

If you are interested in a diet for Crohns I suggest you check out CROHNSBOY.com.

I am glad you are feeling better, the items you mention fit a gluten free diet, assuming there are no cross contamination factors.

I suspect I may have Crohns in addition to the Celiac but I have lost all interest in doctors, I followed the strict gluten free diet for two and a half years without healing and am now following the SCD (Specific Carbohydrate Diet) and seeing improvement.

quietmorning01 Explorer
quietmorning01
Posted

My father has Crohns disease, and when I told him that I had a positive biopsy for Celiac, he said, "yeah, I.m not 'supposed' to eat wheat, either." **chuckles** He didn't say anything more, so I have no idea whether he is also Celiac or what that actually meant. . .knowing my dad, I SERIOUSLY doubt he's changed his diet on iota! Getting health / illness information out of him is like pulling teeth, though - so I doubt I'll find out anything more.

Have you had a biopsy completed for Celiac?

skymgirl Newbie
skymgirl
Posted

Hi there -

I have both Crohn's and Celiac - diagnosed with both in a span of 2 weeks. I always had symptoms of Celiac so I wasn't too surprised when my blood work came back positive, my blood work showed positive for IBD as well. (My GI could feel the inflammation in my terminal ileum during my exam.) I was diagnosed with Crohn's after a CT scan, I'll be having my first colonoscopy the day after Memorial Day. (Yay!) I'm on Asacol right now for the Crohn's, and I'm on the gluten-free diet, of course. I'm also allergic to peanuts, and have shown sensitivity to dairy.

I'm still having pain and problems with C, but my doctor told me to be patient and to give the diet and Asacol time to work. If I'm still not feeling better she said we can adjust the medication. I'm lucky that my case of Crohn's is considered mild.

Has your doctor recommended a low fiber diet? If so you might want to check out how much fruit/veggies you're eating to make sure you're not overdoing the fiber. I know some Crohn's patients also have trouble with raw fruits/veggies; I've been ok on that front.

It can be rough to have both of these things going on - I'm still pretty new to it so I'm learning how to deal with it. Hope you're feeling better soon!

GFinDC Veteran
GFinDC
Posted
....

In my research I have found that many people with Crohns are sensitive to gluten, casin, and lactose. I am trying to eliminate these things from my diet and I AM feeling better!!

...

Also Ive been living off of Almond milk, rice checks, rice cakes, fruit, veggies chicken, fish, and yougart.

I have an occasional potato chip and plantain chip. Are all of these things Okay?

...

Hi Redspot321

I have celiac and I cut out dairy due to lactose intolerance and casein. Lactose is a milk sugar an casein is a milk protein. Either one can cause problems, or both. If you are only lactose intolerant you might do ok on some brands of yogurt. But I don't think you can find any yogurt that doesn't have casein, so if casein is a problem it's goodbye yogurt! You have to check your yogurt brand for gluten also. Some of them use fruit fillings that contain gluten. If you search for yogurt threads on this site you will probably find a number of threads on it with safe brand suggestions. I don't do yogurt myself so can't offer a brand that's good.

I make most of my food at home, rather than buying pre-made things like canned soups or cereals etc. That way I avoid hidden gluten from cross contamination (usually) and also lots of preservatives. I also can avoid soy that way and yeast. All things I think are bad for my body, although others may be ok with them.

Watch out for the milk substitutes as some of them were made with barley extracts (Rice Dream). I don't know if that's still the case though. Some rice cakes are ok some are not. Search on the brand name here to find out.

Sounds like you are getting a positive effect from cutting back on the gluten. You might want to read some of the threads on vitamin's and supplements also. Damaged intestines don't absorb them all that well.

I hope you keep with the gluten-free diet for a few months anyway and give it a real chance to work. It can take several months to learn how to eat right and avoid the stuff. Anyway, welcome to the gluten-free world! :)

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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      24

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

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

      Heat intolerant... Yikes

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

      Related issues

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,150
    • Most Online (within 30 mins)
      7,748
    TheaBr
    Newest Member
    TheaBr
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      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
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      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
      Body dysmorphia experience

      By Scott Adams · Posted

      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
      Heat intolerant... Yikes

      By Scott Adams · Posted

      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
      Related issues

      By Scott Adams · Posted

      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.
×
×
  • 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.