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

Prilosec Forever

penguin

Recommended Posts

penguin Community Regular
penguin
Posted

I went to the Dr. on Friday for pink eye and apparent impetigo and of course celiac came up. Before the pink eye actually...

Anyway. My former GI (idiot) finally sent my Dr. my records from two years ago. My Dr. was insulted when I called the guy an idiot, but then I explained that the only time I saw him was while I was unconscious and when I called about the nexium not working for the pain, his nurse said I was taking it wrong. Then my Dr. said, "ok, maybe you have a reason to call him an idiot." :lol:

She said that the endoscopy showed long term irritation in my stomach caused by too much stomach acid, which, over time could cause cancer. Great. So she said that I have to be on prilosec until further notice. She gave me a script at least, so it'll be cheaper since I can go mail order. It seems to work when I'm gluten-free, it didn't before, but at least I feel better with it, so far.

She also said that celiac disease is a "faddy diagnosis" right now. She also said she doesn't know if it's because the medical community is becoming more aware or if dr's don't like everyone having IBS. She also said it's probably because the more accurate blood tests make it easy for PCP's to test for, and the biopsy is falling out of the loop. She also says that she tests a lot for celiac disease, and only 1 out of 10 or so come back with funny bloodwork.

I'm not sure whether to feel confident in my dx or not, though she does appear to think that I'm celiac. I said that I was at a point where I don't feel *good* but that if I get gluten from cc that I feel much worse. She said, ok, it's helping but you're not at 100%.

I don't know what to think... :blink:

Maybe I'll do a weekend long gluten challenge this month and see what happens.

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

Celiac.com Sponsor (A8-M):


carriecraig Enthusiast
carriecraig
Posted
She also said that celiac disease is a "faddy diagnosis" right now.

Hmmm, I don't like the sound of that! I really think more people are becoming aware of the disease, and it is finally getting diagnosed.

I hope you feel better soon...

RBC Newbie
RBC
Posted
I went to the Dr. on Friday for pink eye and apparent impetigo and of course celiac came up. Before the pink eye actually...

Anyway. My former GI (idiot) finally sent my Dr. my records from two years ago. My Dr. was insulted when I called the guy an idiot, but then I explained that the only time I saw him was while I was unconscious and when I called about the nexium not working for the pain, his nurse said I was taking it wrong. Then my Dr. said, "ok, maybe you have a reason to call him an idiot." :lol:

She said that the endoscopy showed long term irritation in my stomach caused by too much stomach acid, which, over time could cause cancer. Great. So she said that I have to be on prilosec until further notice. She gave me a script at least, so it'll be cheaper since I can go mail order. It seems to work when I'm gluten-free, it didn't before, but at least I feel better with it, so far.

She also said that celiac disease is a "faddy diagnosis" right now. She also said she doesn't know if it's because the medical community is becoming more aware or if dr's don't like everyone having IBS. She also said it's probably because the more accurate blood tests make it easy for PCP's to test for, and the biopsy is falling out of the loop. She also says that she tests a lot for celiac disease, and only 1 out of 10 or so come back with funny bloodwork.

I'm not sure whether to feel confident in my dx or not, though she does appear to think that I'm celiac. I said that I was at a point where I don't feel *good* but that if I get gluten from cc that I feel much worse. She said, ok, it's helping but you're not at 100%.

I don't know what to think... :blink:

Maybe I'll do a weekend long gluten challenge this month and see what happens.

I had the same issue with my drs. One thought I had it, another thought I did not. My best advice would be to see another dr. and get another opinion. The whole diet thing about immediately feeling better also was confusing bc it took me a while to feel better, or to realize what feeling good actually was. Ask to see your records if you haven't already, then you can ask specific questions about what things really are. In my case, my second dr. was not interpreting the biopsy correctly, therefore it was plainly obvious why he though I did not have it, bc he was interpreting a Chrone's disease biopsy and not the celiac one. Crazy! Good luck and just explore your options when it comes to drs. Your best doctor is yourself!

penguin Community Regular
penguin
Posted
  • Author
I had the same issue with my drs. One thought I had it, another thought I did not. My best advice would be to see another dr. and get another opinion. The whole diet thing about immediately feeling better also was confusing bc it took me a while to feel better, or to realize what feeling good actually was. Ask to see your records if you haven't already, then you can ask specific questions about what things really are. In my case, my second dr. was not interpreting the biopsy correctly, therefore it was plainly obvious why he though I did not have it, bc he was interpreting a Chrone's disease biopsy and not the celiac one. Crazy! Good luck and just explore your options when it comes to drs. Your best doctor is yourself!

My endoscopy was 2 years ago and they only did one biopsy, and only in the actual stomach. He was checking for cancer, celiac wasn't mentioned, and I had never heard of it. That GI is in another state, so I'd have to find a new one.

She said to stay on prilosec because I still have burning. It seems to work as long as I am gluten-free, so no worries there. It's just annoying.

I have all of my medical records, and I was the one that sent my dr records, since the old GI's office is uncooperative. The endo showed long term stomach irritation, and he didn't go past the lower sphincter in the stomach.

I'm assuming celiac until I'm diagnosed otherwise, but I'm going to do a big challenge in a week or so.

key Contributor
key
Posted

Caffeine is a HUGE cause of heartburn for me. I can no longer consume it in any amounts. It brings on IBS symptoms and just seems to slow my GI tract down. Prilosec seems to make my stomach hurt.

I hope you feel better and the prilosec continues to work.

Monica

shai76 Explorer
shai76
Posted

I've had reflux my whole life (now 30) and my son has had it his whole life (almost 2). We both take prilosec twice a day for LPR (we reflux into our throats and it causes lots of damage), and it works great! There is a proper way to take prilosec and other proton pump inhibitors. If you do not take them the right way they may not be having an effect. Just take it 30 minutes before you eat anything in the morning. That gives it time to get into your blood stream and "deactivate" those acid pumps, then the food is what activates the stomach. PPIs do not work unless you have food in your stomach, so make sure you eat a good breafast. If you take it twice a day take the second one a half hour before supper. It won't do anything if you take it before bed. Some people take zantac before bed if their reflux bugs them when lying down. Prilosec works better for day because there is food in your stomach, and zantac works better for night time reflux.

Gluten intolerance can definitly increase reflux symptoms since your body ain't digesting that stuff properly. Plus you have gastritis which is an uncomfortable condition as well. Stay away from fatty and greasy foods as well as the gluten. I bet with the meds and a special diet you will feel so much better.

Remember that doctors are just people and have varying opinions. You know what is best for your body. Everyone is different.

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. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    2. MichaelDG
      - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.