• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

I'm Back And I Think I'm As Close As I'm Ever Gonna Get To A Dx
0

Rate this topic

7 posts in this topic

Recommended Posts

Hi everyone, I use to be on here almost everday for a long time but the crazyness of not knowing if I had Celiac or not and my SO not believing it I went back to eating gluten after being gluten free for several years, loosing weight and feeling lots better.

 

Well, since I been here I went back to being sick, gained back all the weight I had lost and have been dx'd with Lupus/Conective Tissue Disease, with Fibro type symptoms, Chronic Fatigue Syndrome, Rynauds Syndrome, Degenerative Disc Disease, Endometriosis, Chronic Anemia and the really big one Severe Erosive Gastritis.

 

Here a while back I kept getting sicker and sicker and I wound up in the hospital with a Lupus/Connective Tissue Disease flare and I had lost so much blood that I wound up needing a blood transfusion.

 

While I was in they wanted to track down the bleeding so my dr contacted the hospitals gastro dr and he came in to talk with me and since he was going to do a Endo and Colonosopy on me I asked him to take enough biopsies to check for Celiac disease. I told him that I definetly had symptoms of when I ate gluten but that none of the blood tests showed I had it, So he said he would check.

 

Well, this is what my official paperwork says.

 

Gastric Antral Biopsies:

     Superficial fragments of gastric antral mucosa with severe hemorragic erosive gastritis and vascular congestion.

      Negative for tumor, Immunohistochemical stain for Helicobater negative.

      Several biopsies taken shows villi has slight blunting which is indicative of mild gluten sensitivity.

 

That's it. So, for the old timers here. SHould I consider this Celiac Disease? When I talked to the gastro dr he was like the villi wasn't destroyed so I don't consider you to have Ciliac. But until you get your gastritis under control I would avoid gluten if I were you. Arrggghhh!

  Just frustrating but I guess I need to be gluten free no matter who gives me crap about it.

 

Guess I need to redo my signature post down below.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Grrr, Kareng,

 

That just kind irritated me just a bit more. The first 1 seemed to go a good way towards being Celiac and the second just blew it out of the water because it could be something else. :wacko:  But the 1 thing that sticks out is my immune system. Lupus, Connective Tissue Disease, Rynauds and other stems from immune problems plus gastro problems.

 

Geeze Louise, I need to be gluten-free but it's gotten to be such a darn hassle plus my depression dosen't help matters as well as stressors on top of everything.

 

But do appreciate the help Karen.  Thank you.

Share this post


Link to post
Share on other sites

(hugs) You've dealt with a lot.  :(

 

I would advise you to go gluten-free. You "could" be a celiac, have symptoms, have other autoimmune problems so are more likely to have celiac, and many of the diseases you are dealing with tend to respond positively to a gluten-free diet even when the patient is not a celiac because it can reduce inflammation.

 

You might as well go gluten-free again. I know it's a hassle and can be difficult when you feel so poor, but it could help you feel better withing a few weeks or months.

 

Best wishes.

Share this post


Link to post
Share on other sites

Hi Txplowgirl,

 

Your improvement when gluten-free plus villi blunting sure seem like strong indicators of celiac to me.  Not having total villi destruction as a criteria for celiac is wrong.  The Marsh scale rates villi damage at various levels, and not just as the worst damage.  Your GI doc should be able to tell you your Marsh scale rating.  For that matter, he should give you a copy of the results for your records.  You may need them if you end up going to real gastroenterologist someday.

Share this post


Link to post
Share on other sites
Ads by Google:


.... slight villi blunting....

 

I love these doctors who won't diagnose officially, until you are at least 3/4 dead already.  <_<

Share this post


Link to post
Share on other sites

I love these doctors who won't diagnose officially, until you are at least 3/4 dead already.  <_<

Me too.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,137
    • Total Posts
      939,858
  • Member Statistics

    • Total Members
      66,117
    • Most Online
      3,093

    Newest Member
    T-lil
    Joined
  • Popular Now

  • Topics

  • Posts

    • Are doctors even getting close to diagnosing the actual number of cases of celiac disease? Or are they missing the vast majority? Researchers have said for some time that there are far more people with celiac disease than are being diagnosed, and that the vast majority of case go undiagnosed. If a new study by Canadian nutrition researchers is any indication, most cases of celiac disease remain undiagnosed. View the full article
    • Thanks for your input, everyone!  I will get tested soon enough for this condition, and I will definitely update you all when the results finally come in.
    • Have you had a sleep study? I have severe sleep apnea and used to sleep 12 hours a night and still was exhausted. Falling asleep at a stoplight exhausted. I do not fit the typical male and overweight stereotype either! But my cpap keeps me more well rested and alive. A sleep study is easy and it's the cost of an office copay. 
    • Have you ruled out the common Keratosis Pilaris (KP) also know as chicken skin?   https://www.aad.org/public/diseases/bumps-and-growths/keratosis-pilaris
    • Squirmingitch brought up the macaroon idea, I find Zsweet, and Swerve Sugar Free sweeteners do not throw me out of keto and I use them to make my "treats" You might sub it in these if your like that idea. I personally just use coconut and almond meal in my baked goods with high fat nuts like walnuts and pecans (Walnuts and pecans have so much oil in them you can butter then in a blender or food processes into a pour able sauce that can be used as a dressing or mixed with eggs and coconut flour into a dough)

      Also brought up batch beans....bad idea for keto, but to integrate a keto version, try cooking a roast in a crock pot, or a whole bunch of chicken breast. You can eat on it for a week just serve it over greens. Or Miracle Rice (zero carb rice) Batch cooking will become a life saver. (works with some foods) and meal preps give you time to just grab a pre fixed meal out of the fridge and go if you need to do something later in the day. First year I was gluten free I did this daily for myself before meat became a issue (I look forward to doing it again).
        CB brings up the issue of selenium and melotonin. YES this is a huge thing and completely evaded my thoughts. I consume massive amounts of seeds, like pumpkin, sancha inchi, hemp all high in these in addition to flax and chia. I tend to rotate my seeds to prevent intolerance issues and only the roasted ones. Look up GERBS allergen friendly foods for pumpkin, hemp, flax, and chia.  I suggest the ground flax under meals as the seeds I notice have issues, I personally always have to cook my chia, and flax seeds into egg dishes or I can not eat them. If you blend them in with the eggs  1-2tbsp seed meal to 1 1/2 cups eggs -1/2 cup almond milk 2tbsp coconut flour and some almond butter and stevia to taste let it set up 5-10mins then blend again you have a batter for pancakes/waffles/doughnuts/breading batter. >.> something like this I whim it as a chef.

      I was thinking of another think I like to snack on. Rythem Super foods roasted kale and the kale chips in moderation. I also crush the kale chips up and sprinkle over eggs as a condiment, Adds plenty of vitamins and the ranch flavor for this is amazing.




       
  • Upcoming Events