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. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,303
    • Most Online (within 30 mins)
      7,748

    Josanita
    Newest Member
    Josanita
    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

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.