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

Questioning my diagnosis, Can PPI's cause Villi blunting?


Zprime

Recommended Posts

Zprime Explorer

Hey Everyone

So since March my life has been a living nightmare, anxiety, sickness, I've lost my jobs, I'll probably lose my long term girlfriend, and I've lost all but one of my friends thanks to Celiac Disease.

I shouldn't say I've lost it to Celiac Disease, I Should say I've lost it to the Anxiety and Depression that comes with it.

So one year ago I was a fat guy, bad diet, stressed, getting heart burn and a strange dull pain in my chest ( Right side ).

I figured it's probably just heart burn. No Biggie.

My Doctor prescribed me PPI's.

After being on them for 3 months and no changed he upped the doseage, It helped but I still had symptoms.

I begged him for an Endoscopy to rule out anything more serious, and sure enough I got this.

' Mild To Moderate Villi Blunting - TTGA Report 16 For Samples '( 5 - 10 Is the Normal Range ).

I was immediately told I had celiac disease, and told to go on a gluten free diet.

I was non symptomatic before, other than the occasional bout of IBS ( just pains , no diarrhea or abnormal stools )

The months that followed I started to develop extreme pains, panic attacks, anxiety, reading up on all the horrible things celiac disease can do to a person ( early death, cancer ect ).

I then found I started to develop symptoms I didn't have before ( Inflammation, Diarrhea, constant fear of being poisoned ), and on top of that I just started feeling unwell, every day.

It got to a point where I pretty much want to commit suicide on a daily basis, What's the point in living if I cant even eat a gluten free snack without worrying about being ' poisoned ' and getting ' stomach cancer '.

Finally I went to another doctor and said ' I feel worse off the gluten, can we re-test ', He agreed my symptoms were odd being that I was gluten free and feeling worse, so I'm on the 30 day gluten challenge right now ( a piece of bread every day ).

Other than the bread I'm juicing vegetables, eating lots of fruit, lean chicken, and everything else is ' Gluten free ' or as gluten free as I can make it .

I feel... fine for the most part, but I do get some inflammation in the bowl at night, no abnormal stools, no diaherra, but constant anxiety and constant aches and pains all over.

Is this my brain making up the symptoms? ( I was fine before the diagnosis ), Could the PPI's of caused the villi blunting?

Nobody else in my family has Celiac, or has ever had it in the past 3 generations, and honestly I was ' fine ' a year ago, It seems like all of my symptoms and problems came from knowing what Celiac is and now I'm ultra sensitive to it.

Would love to know if anyone here ever had villi blunting and ibs that was diagnosed as celiac but it was something else.

I can't tell if Gluten is my friend or foe, and I realize everyones symptoms are different... but here's what happens now..

 

1pm - Eat a slice of toast

1 - 9pm - Fine

9 - 10pm - Slight inflamation in bowl

11 pm - Bowel movement, nothing abnormal

 

Would love to get some more insight on everything

 

 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran
(edited)

The endoscopy is considered the standard for diagnosis of celiac disease.  Positive endoscopy and positive blood antibodies and positive response to the gluten-free diet should leave no doubt in your mind that you have celiac disease.  But, you said you felt worse after going gluten-free.  So, here's the rub.  Many of us take months or more to heal from celiac damage.  It's not like getting over a bad meal.  Your immune system is now trained to react and attack your body when you ingest even a tiny amount of gluten.  The immune response (attack) can go on for weeks or months.  During the healing process our digestion is volatile.  Sometimes it's better and sometimes its worse.

It can help to drop all dairy form your diet.  Also avoid all processed foods.  Eat meats, veggies, nuts, and fruit.  Avoid carbs and sugar.  Eat a simple diet and let your digestive system heal.  That means no spicy foods.

Celiac disease does not go away.  So if you had it before you have it now.  Regardless of how your symptoms vary, which it is not unusual that they do.

Edited by GFinDC
cyclinglady Grand Master
(edited)

I am the first celiac diagnosed in my family.  I had no GI issues at all when I was diagnosed.  I just went in for a cancer screening colonoscopy like all my friends were getting.  During my GI consult, he suggested celiac disease and I was shocked.  Shocked because my hubby had been gluten-free for 13 years and I knew exactly what being gluten-free meant.    Blood tests and an endoscopy confirmed my diagnosis.  I had to wait for my endoscopy due to work issues, so I beefed up on gluten.  I literally ate a loaf of sourdough a day plus  desserts.  Within seven weeks, I knew gluten was a problem as I started to get GI issues.  Maybe I went overboard on my “extra” challenge, but in my heart, I knew it was a farewell gesture.  I must have been a bit gluten light for years in support of my hubby or my body just adapted over the years.  Like my running a marathon despite being very anemic.  

Since my diagnosis, a gluten exposure does make me very ill. All the classic GI symptoms.  Celiac disease is like a chameleon— always changing.  

The most common cause for villi blunting is celiac disease, but many other things can cause that to happen.  But you had a very positive TTG test result and the intestinal biopsy confirmed it.   I think you are in serious denial!  

I am not sure four weeks is enough time to a challenge for the blood tests.  The normal recommendation varies from six to 12 weeks (two to four for the endoscopy).   If you get the panel, insist on the complete one including the EMA IgA and DGP (IgG and IgA versions) besides the TTG.  Why?  I test positive to only the DGP IgA.  

The anxiety and depression is a very common symptom.   My kid can usually tell if I have had gluten because I become anxious.    Once diagnosed, it takes weeks or months to feel better because 1) the gluten-free diet has a steep learning curve and 2) it takes time for antibodies to calm down.  

Cancer is rare.  So rare.  I do not worry about it.  Besides, the risk literally goes away if you are on the diet.  

I hope this helps!  

Edited by cyclinglady

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
  • 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. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,438
    • Most Online (within 30 mins)
      7,748

    rednecksurfer
    Newest Member
    rednecksurfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.