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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748

    judytay080
    Newest Member
    judytay080
    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
      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
      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
      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
      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
      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.