Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Newbie Here, Dx With "partially Treated celiac disease" & Gastritis


creekprincess

Recommended Posts

creekprincess Newbie

Hi everyone,

i'm a newly somewhat diagnosed celiacs person. i had an EGD on monday and the doctor told my husband that i had a abnormal tissue in my duodenum that was consistant with celiac disease. I got the biopsy results today and they said that i have gastritis and partially treated celiacs disease. the celiacs diagnosis totally surprised me because i don't have very many symptoms. i have been on prilosec for 2 1/2 years for heartburn.

so, my questions are: if it's partialy treated, and i didn't know that i had it, does that mean it's in the early stages? also, i've read that gastritis has to be treated with meds, where celiac disease isn't. is there anyone out there that has both, and how is it working out for you? (my GI has me on carafate now too).

i have been gluten-free for 2 days only, so i'm binging on gluten til monday and doing my bloodwork then. does anyone have any suggestions about getting one doctor in charge of all of this? who would be the best-primary or GI doc?

and thank you so much for having so much info in this forum. it has really helped so far!!

creekprincess


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



Celiac.com Sponsor (A8-M):



buffettbride Enthusiast

Chances are your GI will be more knowledgeable than a regular doc. My experience is very few regular docs are familiar enough with Celiac to give correct information. The reason for this is doctors practice MEDICINE, so they are apt to treat your ailmeints with medication. Since Celiac requires no medication, only diet compliance, it's very hard for doctor types to get their arms around it. Just my opinion of course.

It's funny that you say that you haven't had symptoms but you've been on Prilosec for 2.5 years for heartburn. What you thought of as heartburn was a symptom of the Celiac. Perhaps you'll find that by following the gluten free diet, those meds won't be entirely necessary any more unless another condition specifically calls for it.

Once you get really into eating gluten free, you'll realize quickly how much knowledge you'll have about the diet, ingredients, safe/unsafe foods, etc. even compared to many "professionals." I often find that to be the case.

I wish you the best in your healing and recovery.

sandsurfgirl Collaborator

Chances are your GI will be more knowledgeable than a regular doc. My experience is very few regular docs are familiar enough with Celiac to give correct information. The reason for this is doctors practice MEDICINE, so they are apt to treat your ailmeints with medication. Since Celiac requires no medication, only diet compliance, it's very hard for doctor types to get their arms around it. Just my opinion of course.

It's funny that you say that you haven't had symptoms but you've been on Prilosec for 2.5 years for heartburn. What you thought of as heartburn was a symptom of the Celiac. Perhaps you'll find that by following the gluten free diet, those meds won't be entirely necessary any more unless another condition specifically calls for it.

Once you get really into eating gluten free, you'll realize quickly how much knowledge you'll have about the diet, ingredients, safe/unsafe foods, etc. even compared to many "professionals." I often find that to be the case.

I wish you the best in your healing and recovery.

Exactly. Even many GI docs are clueless about celiac so stick with the doc who is diagnosing you because he sounds pretty knowledgable.

Your GI issues are celiac symptoms and you may have other health issues that you are not attributing to celiac. For instance, I started having anxiety attacks and feeling like I was crawling out of my skin about a year ago. I have a happy home life and it made NO sense whatsoever. After 2 days gluten free the attacks disappeared. As did my shortness of breath and constant asthma troubles.

I also had chronic infections, sinus and bronchial mostly. The infections were a complication of untreated celiac disease. You can have fatigue, insomnia, the list goes on and on and on.

Don't expect a doctor to "treat" you for celiac. The only treatment is gluten free diet and it's lifelong. In the absence of symptoms damage still happens because it's autoimmune. Most doctors can't give you much guidance on the gluten free lifestyle. That's what we're here for. ;) And books, etc.

Reba32 Rookie

the GI doctor that did my endoscopy was absolutely useless as far as information about Celiac and going gluten free was concerned. She just kept saying "just avoid wheat, you'll be fine". No mention ever of barley or rye or any products that are made with either. When I corrected her, she pretty much said "yeah, whatever".

Arrogant so and so. I worry for any other patients she may have diagnosed with Celiac who don't have the wherewithall to do any research on their own. She is seriously useless.

Honestly, you're probably best off with this website and the Living Gluten Free for Dummies book. The website has constant updates, and the Dummies book is a good read.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,885
    • Most Online (within 30 mins)
      7,748

    NotNowNelly
    Newest Member
    NotNowNelly
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
    • terrymouse
      Thanks for clarifying! I'll put the gluten free thing on hold then. In late december last year I suddenly started having digestive issues I never had before. My stomach started feeling tight most of the time, I got full very quickly, little to no appetite, constipation, I started to feel ill after eating - sometimes a stomach ache, sometimes nauseous, or lightheaded, or heart beating fast. Some things worse than others, I started avoiding fatty foods in general because they made me throw up . I haven't had issues with food like this before, so this is all new to me. I started losing weight because eating was such a chore. I hadn't considered it could be celiac, but my GP added it to the list of things to test for and then referred me to the GI specialist when the results came back positive. They also found a large gallstone, which was causing me pain in the pit of my stomach, so I had my gallbladder removed in march. The pain is gone but otherwise everything else, the tightness and sensitivity and lack of appetite remains an issue, and I'm still losing weight. I was around 200 lb in december, right now I'm 152 lb. 
    • trents
      @Shining My Light, I am not a doctor or a trained medical professional of any kind. However, I was a hospital chaplain for many years and sat in on countless numbers of medical team meetings with doctors and nurses discussing the medical issues of their patients as well as tests administered and interventions applied. What I can tell you is that many diseases can only be diagnosed by running a battery of tests coming at the problem from different angles. It is normal to not have all the tests give a positive confirmation for a given disease. But rather, a diagnosis is arrived at by looking at what the balance of the test results from all angles suggest. This may especially be true of autoimmune conditions. You need to also understand that the degree and number of vitamin and mineral deficiencies and symptomology depends on a number of factors. For instance: 1. How many "celiac genes" are involved? Homozygous or heterozygous? and which genes? DQ2?, DQ8? or both? 2. How long ago was the onset of the celiac disease? How long has it been acting on the body? 10 months or 10 years? That will make a huge difference. 3. How much gluten has the person been accustomed to consuming since onset of celiac disease? The more they consume, the more damage you would expect. 4. What is the age of the person? Younger people have bodies that are more resilient than older people and can fight against disease more effectively. 5. What other health conditions is their immune system being tasked to deal with? 6. What is their general state of vigor? Some people just have stronger constitutions than others.
    • Shining My Light
      @trents I do like the idea of the shake!  yes. I was expecting to have all my blood tests that were celiac related to be positive. I guess I’m confused about why they wouldn’t be. Nothing else in my blood work even gave a clue as to helping me either. All my vitamins were good other than D and that’s everyone in my state.    @RMJ how impressive to be able to make all those baked goods! I’ve been tasting some gluten free items. There is one thing I found that’s good and it’s Siete Cinnamon churro chips put over ice cream with chocolate syrup . Tastes like fried ice cream!  I’ve also noticed so many more things have a “gluten free” symbol on them. Restaurants mostly but also a lot of packaging. Maybe it’s always been there but obviously since my blood tests I’ve noticed.  I really hoped I would find someone who like me was sick a few weeks prior to getting their  TTG test and it was raised for a viral reason, or it’s a “fluke” or something else.      
    • RMJ
      I can’t imagine eating 4-6 slices of bread per day, either.  You just need wheat, it doesn’t have to be bread and it doesn’t have to whole wheat. If a piece of cake or a doughnut is about the same size as a slice of bread it’s probably roughly equivalent. Or you could do what Trents suggests and just buy powdered gluten. Gliadin X can help by “digesting” small amounts of gluten contamination.  You would NOT want to take it while eating bread/cake/doughnuts in preparation for an endoscopy because it could make your body react less. I have finally figured out how to make a number of gluten free baked goods. Cakes, cream puffs . . . My neighbors know they are gluten free but say they would never guess otherwise.
×
×
  • Create New...