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

Celaic Is Acting Up (We Think)


tross

Recommended Posts

tross Newbie

I hope its ok to post on this board, I'm not sure what board to post on.

My grandfather has had celiac disease for about 35 years now. He has been extremely sick since February with the same symptoms as if he were consuming gluten. He has not changed his diet (which is completely gluten free) and has even cut out all dairy in his diet.

He cannot eat without feeling tremendous pain in his stomach and when he doesn't eat, he still experiences pain. He is also not moving his bowels normally. He has lost about 25 pounds. We had him switch doctors because his wasn't really doing much for him. He had an x-ray last week where he ingested barium and his doctor photographed him as he ingested it, and we are still waiting on the results. He is getting a biopsy done on the 22nd.

We did find out that he has Barett's Disease, which of course I am still researching to fully understand.

My big question is this: Why is he having this awful pain and is there anything he can do to alleviate the pain? Any insight is very appreciated.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. I am sorry he is going through so much. I don't know if he can take it but Pepto Bismal liquid helps me with the pain when it is in the stomach. When it is intestinal I haven't found anything that helps other than a hot water bottle and being curled up.

Is he on any meds or OTC stuff? If he is it is important that the pharmacist check his meds for gluten statis if they are not already. If the meds are generic they have to be checked at each refill. Name brand only need to be checked once as they can't change the binders until they go generic. Also check any vitamins or supplements he may take. If any have barley or wheat grass those should be dropped for now.

Another possiblity is that he has an additional intolerance. Does he consume much soy? A lot of stuff is loaded with soy protein and for some of us it can cause symptoms similar to gluten. You may want to try eliminating that also for a while to see if it helps.

I hope he is feeling better soon. Ask any more questions you need to and read as much as you can here. By the way, you and your other family members have been screened for celiac right? If not all should be even if they don't think they have symptoms.

tross Newbie

Thanks for you response and your concern ravenwoodglass, after reading your post and another post on here about being allergic to gluten free products, I called my grandfather and told him to stay away from anything with soy, corn flour, rice, and dairy (he was just sitting down to eat a bowl of rice crispies, cornflakes with milk, oy)

I had to convince him to do so because he loves to eat, but he said he would try it. The only thing that he is currently taking is similar to prevacid (it begins with a K, but I can't remember the name of it) and we already had the doctor double check to see if it had anything gluten in it. This medication is to treat his Barret's esophagus.

He was also taking i-caps for about a month when this all flared up, which had geletin in it. His doctor took him off of this medication immediately, but he still continues to have the same problems- so we are not sure if this trigered it or not.

Thank you!

Wolicki Enthusiast

are you sure he is adhering to the diet? Because most rice krispies and cornflakes contain gluten.

i-geek Rookie

are you sure he is adhering to the diet? Because most rice krispies and cornflakes contain gluten.

Yep. If he eats these daily, that might be the problem. I wonder what else he's eating that might be problematic. For example, I don't eat Campbell's soups and had no idea that none of them were gluten-free until my mom put a can in one of her recipes and we had to play detective to find out what made me sick. Also, if he's changed any brands of foods that he usually eats, that could be a culprit as well (for example, I'll eat Lundberg rice cakes, but not Quaker ones since the latter are manufactured in a facility that manufactures wheat and I don't think they're all gluten-free).

tross Newbie

I know he is adhering to his diet to the best of his knowledge.. he'as always eaten those cereals. I will have him look at the ingredients snd let him know about this!

As for canned soups- he doesn't eat or make anything with anything canned. He makes his own broth and soups because of the gluten that is in most of them.

This is good stuff- thanks for the tips! I love this website and wish I would have found it a long time ago!

lele123 Newbie

I hope its ok to post on this board, I'm not sure what board to post on.

My grandfather has had celiac disease for about 35 years now. He has been extremely sick since February with the same symptoms as if he were consuming gluten. He has not changed his diet (which is completely gluten free) and has even cut out all dairy in his diet.

He cannot eat without feeling tremendous pain in his stomach and when he doesn't eat, he still experiences pain. He is also not moving his bowels normally. He has lost about 25 pounds. We had him switch doctors because his wasn't really doing much for him. He had an x-ray last week where he ingested barium and his doctor photographed him as he ingested it, and we are still waiting on the results. He is getting a biopsy done on the 22nd.

We did find out that he has Barett's Disease, which of course I am still researching to fully understand.

My big question is this: Why is he having this awful pain and is there anything he can do to alleviate the pain? Any insight is very appreciated.

Oh boy, thats rough! Here's my suggestion. If he can do it, get off all processed food and eat brown rice and veggies to start with and see if things calm down. What gives me pain is eating fruit.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Thanks for you response and your concern ravenwoodglass, after reading your post and another post on here about being allergic to gluten free products, I called my grandfather and told him to stay away from anything with soy, corn flour, rice, and dairy (he was just sitting down to eat a bowl of rice crispies, cornflakes with milk, oy)

Thank you!

Does he know he also has to avoid barley, rye and oats? Make sure he understands that the barley malt in most cereals is an issue and is also an issue in stuff like beer and malt liquors, some candy etc.

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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

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

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • 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.
×
×
  • 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.