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

Ulcers and Celiac Disease


chicago wendy

Recommended Posts

chicago wendy Rookie

Hello everyone! I just stumbled on this website while searching for any possible correlations between celiac disease and ulcers. 

I am 61 years old and was diagnosed with celiac disease 39 years ago! Thus, I've been on a strict gluten-free and dairy-free (as well as soy-free) diet all these years. After doing very well, I started developing repeated ulcers about three years ago and am still being treated for them. I have NO risk factors; i.e., don't have H Pylori (have been tested twice), don't use NSAIDs, don't smoke, don't drink and drink very little coffee - in fact none since my diagnosis three years ago! I was also tested for Zolinger Ellison, (sp?), a rare syndrome which causes increased gastric levels and that was negative as well.

I was interested to read on some older posts on this website (around 2010) that others with celiac disease have also dealt with this problem and I'm wondering if the medical establishment has yet to recognize that there may in fact be a correlation between the two conditions.

I'd love to hear from anyone who has thoughts on this. I'm also interested in treatment that doesn't involve PPIs. After three years of taking them and because they're powerful drugs with many potential side effects, I would love to cure my ulcers in a natural way. 

Thanks very much!!

Wendy Manto


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Where do you have issues with them? Stomach, lower, or upper intestines? I have ulcers in my large intestines and it is caused by ulcerative colitis. If you have them in the stomach perhaps drinking aloe vera juice might help. I drink the stuff twice a day to help with digestion issues. And how is your stomach acid in reference to PH is it strong, weak. There is a issues with a reflux like result if it is to weak and causes various issues including gastric emptying. PosterBoy would know more on this. Hopefully with some more info someone here can help you more.

Estes Contributor

I was just diagnosed with Ulcers as well.  I feel better following the AIP diet but I don't stick with it because my husband loves food and cooking.  He cooks gluten free.  I drink wine and sometimes eat before bed. I thought maybe I caused it that way?  I am on a pill now that coats my stomach, providing a protective barrier for the ulcers so they can heal.

Hopefully others can provide more insite.

chicago wendy Rookie

Thank you, Ennis and Estes, for your responses! Ennis, my first ulcer showed up three years ago in my dudodeum. Then the next endoscopy showed a different ulcer in the same area. Most recently (just a month ago), the ulcer showed up in my stomach. I don't know anything about my PH. How do I get it measured? I need to find a non-mainstream doctor ... As for aloe juice, I have used it when I was trying to get off of PPIs but when it didn't work, I stopped drinking it. Perhaps I should start again ... I've never known a doctor to talk about a correlation between celiac disease and ulcers. Have you?

Estes, what's the AIP diet? 

Thanks so much to both of you. I hope to learn from this forum. At end of May I'm having another endoscopy and if it shows remaining ulcer(s), I'm going to see an alternatively oriented doc.

Have a great day!

cyclinglady Grand Master

Welcome Chicago Wendy!  

Has your doctor tested you for Crohn's Disease?  Once you have one autoimmune disorder, you can develop additional ones.  Just something to consider.  

Open Original Shared Link

chicago wendy Rookie

Interesting, cycling lady. I was tested many years ago and came out negative but that was a very long time ago ... I may look into that possibility. Thanks.

cyclinglady Grand Master

When was your last celiac blood test conducted?   You might just have a case of activated celiac disease.  

Here is more info on follow-up testing:

Open Original Shared Link

 


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



Celiac.com Sponsor (A8-M):



Posterboy Mentor

chicago wendy,

Let first say.  wow if you were diagnosed in 1978 you were a pioneer in celiac diease becoming more commonly diagnosed.

I wanted to address your PPI question.

***** note this is not medical advice

PPIs can be hard to get off of but they are worth trying to get off.

This link explains why taking PPI's can make things worse.

Open Original Shared Link

This is from the abstract dated February 2007

quoting

"A new study may explain why individuals treated for acid reflux with proton-pump inhibitors (PPI) still experience reflux symptoms.

Researchers from the Lynn Health Science Institute in Oklahoma City, OK, treated 15 individuals with significant complaints of heartburn, with either a PPI or with a placebo. After one week, all participants underwent monitoring and polysomnography, both of which were done after participants were given an acid-inducing meal to raise the baseline occurrence of reflux.

Researchers found that, while total reflux events and acid reflux events decreased considerably with PPI treatment, nonacidic reflux events, such as stomach bile regurgitation, were significantly greater with PPI treatment. Researchers suggest that this increase in nonacid reflux events may explain persistent symptoms in some patients, despite being treated with PPIs.

This study appears in the February issue of CHEST, the peer-reviewed journal of the American College of Chest Physicians."

Note despite this research being 10 years old PPI's are still considered the gold standard for heartburn/ulcers.

But if you read the fine print PPIs were ever only designed to be used for 2 months max and not as a way of life.

Because they have such a high attachment rate very few people ever get off them the first time they try.

Going low carb will help . . . it might not eliminate the heartburn but will probably allow you to step back on your dosages.

Taking Niacinamide can help your ulcer heal.

Here is the abstract but it might help you to read the whole paper if you want to do more research.

Open Original Shared Link

As to you question about how to test your pH (stomach acid) levels it is called a Heidelberg test commonly known as a gastric function test that basically involved swallowing a capsule with a string attached that can retrieved and most peoples true stomach acid level's are not tested before taking/begin PPI's.

dr. Myatt discusses why this is so in her online article "What's Burning You".

Open Original Shared Link

I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

Estes Contributor
On 4/9/2017 at 10:06 AM, chicago wendy said:

Thank you, Ennis and Estes, for your responses! Ennis, my first ulcer showed up three years ago in my dudodeum. Then the next endoscopy showed a different ulcer in the same area. Most recently (just a month ago), the ulcer showed up in my stomach. I don't know anything about my PH. How do I get it measured? I need to find a non-mainstream doctor ... As for aloe juice, I have used it when I was trying to get off of PPIs but when it didn't work, I stopped drinking it. Perhaps I should start again ... I've never known a doctor to talk about a correlation between celiac disease and ulcers. Have you?

Estes, what's the AIP diet? 

Thanks so much to both of you. I hope to learn from this forum. At end of May I'm having another endoscopy and if it shows remaining ulcer(s), I'm going to see an alternatively oriented doc.

Have a great day!

AIP is AutoImmune Protocol or Paleo.  It is grain free which made a big difference in my brain fog and energy levels.  I only did it for 2 weeks and then added a little grain and I am still feeling good.  I feel like the AIP concept is good for people looking to reduce or eliminate autoimmune symptoms.  They have a nice Facebook page where they post stories and recipes.  Very friendly and free.

chicago wendy Rookie

Thank you!

 

chicago wendy Rookie

Yes Posterboy, I was diagnosed before anyone heard of celiac disease. And it was a flukey thing ... I  had been on a trip where I ate lots of bread and I developed severely swollen ankles and water retention all through my body. I was a senior in college at Boston University and amazingly, Lahey Clinic was able to diagnose me after two HORRIBLE endoscopies. Back then, people weren't sedated fully and it wasn't pleasant :). 

Anyway, thank you so much for the info you sent along. I'm aware of the dangers of PPIs and can't wait to get off of them. My plan is for that to happen soon ... Now I have to find an integrative physician in the Chicago area who's good. Anyone know anybody good in the Chicago area?

chicago wendy Rookie

Hi Cyclinglady,

Thanks for your suggestion. I was tested a couple of months ago and don't have active celiac disease. 

Wendy

GFinDC Veteran

Hi Wendy,

I hope you get better soon!  I had a stomach ulcer for several years.  I tried some alternative treatments for it.  Mastic gum, DGL, garlic, honey, coconut etc.  There are a lot of home treatments for ulcers.  Some of these home treatments helped for a while but none of them were a permanent cure for me.

I hope you feel better soon!

chicago wendy Rookie

Hi! Thanks so much! I tried lots of those as well ... in fact, DGL saved me from awful pain for some time but I had the same experience as you .. nothing was a permanent cure. How were you finally cured?

GFinDC Veteran
4 hours ago, chicago wendy said:

Hi! Thanks so much! I tried lots of those as well ... in fact, DGL saved me from awful pain for some time but I had the same experience as you .. nothing was a permanent cure. How were you finally cured?

Hi Wendy,

I was cured by the Good Lord.  :) I finally gave up on all the alternative treatments and started praying (and believing) about the ulcer pain being gone.  I don't know if it is like this for you but my ulcer pain got really old after a while.  So I decided to pray and that did it.  First time I prayed the pain went away for 15 minutes. So I prayed again and it went away a little longer.  And every time the pain came back I prayed and it went away for a little longer.  By midnight it was gone for 30 minutes or more at a time.  Next morning I kept praying and by noon it was gone for good.  I've never had to take any treatment for ulcer pain since then.  By his stripes we are healed, in Jesus mighty name. God is good! :)

chicago wendy Rookie

wow!!!

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. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.