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

creekprincess

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creekprincess Newbie
creekprincess
Posted

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

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buffettbride Enthusiast
buffettbride
Posted

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
sandsurfgirl
Posted

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
Reba32
Posted

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.

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    • trents
      Probably celiac but also confused

      By trents · Posted

      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
      Probably celiac but also confused

      By terrymouse · Posted

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    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      @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.      
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      Virus, celiac disease or both?

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