Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Need Help
0

5 posts in this topic

I could use some advice. I was "partly diagnosed" with celiac disease. I say partly because my biopsy came back saying that I have the blunted vili but no other symptoms. I have been on the diet for almost a month and have seen no changes. I am in constant pain and can't leave the house for more than an hour at a time (nature calls).

The doctors are running a lot of tests and I do trust them to come up with a diagnosis, but i'm getting really frustrated and I'm sooooo sick and tired of being sick and tired.

Could use some advice or just someone to talk to! :unsure:

Beth

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Beth, Welcome to the board.

You could just be taking a while to heal, or you could be getting a fair bit of gluten in accidently. If you post a sample of what you usually eat maybe we could try to pin down any culprits. You wouldn't believe all the things they put gluten in! If we don't find any foods (or medications) in your daily diet, then it could be an additional illness or just delays in the healing process and relief of symptoms. Some people do take months and even years before getting real relief.

You say you only had blunted villi, but no other symptoms. I would say your "nature calls" are a symptom. Did you have this problem before going gluten-free? Also there are over 250 known symptoms and related diseases to Celiac, so maybe you had some and didn't realise they were related. But I wouldn't say that you are "partly diagnosed". You had a positive biopsy. This is undisputable evidence that something is damaging your intestines. Do the doctors think it is gluten doing the damage or something else? If it isn't gluten what do they think it would be??

And another question, are you still consuming dairy products?? If your villi are blunted, then you will not be able to digest any dairy, since the tip of the villi is where the enzymes to digest lactose (milk sugar) are located. If you don't have the tips back yet, then the dairy will give you problems. You may need to give up dairy for at least a few weeks, possibly a few months.

Looking forward to seeing your food "diary".

God bless,

Mariann :)

0

Share this post


Link to post
Share on other sites

The thing is I have no problems ingesting dairy products. I have tried going without dairy products before and trust me that's not it, I was no different going without dairy than I was eating it. I have always had problems with my "nature calls" as well. For a while the doctors thought I had Crohn's Disease (which may still be an option) or Ulcerative Colitis.

I have been sticking to the diet very strictly I read every single ingredient that I ingest. I usually just stick to chicken, rice, fruit, and veggies ( I am a vegetarian that eats chicken and fish).

I have some more tests that the doctors want me to do one being a test for CF and we really hope that's not it! The only thing that is coming out positive right now is that biopsy, however the pathologists were very hesitant to say that is what I have. They sent the biopsies out to the Military Testing place (don't know the name) and we are now waiting for the results.

I am really frustrated and in a whole heck of a lot of pain. Thank you for writing me back and for just listening to me!

Beth

0

Share this post


Link to post
Share on other sites

I'm assuming that since you're being careful to read ingredients you've checked out the chicken you're eating -- I know some chicken has broth injected into it or something like that, and the broth could be a culprit.

Other than that, all I can say is I hope you figure it out and feel better soon!

0

Share this post


Link to post
Share on other sites

It's fresh chicken not the frozen stuff.

Beth

0

Share this post


Link to post
Share on other sites

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
      103,644
    • Total Posts
      918,442
  • Topics

  • Posts

    • How effective is HD skin biopsy after being gluten free for a year
      Looks like you got some good info from previous posters.   I don't understand why you and your doctor think that dairy contains gluten?  Lactose is a sugar not a protein like gluten.  I think you have some other issues.  
    • Question on posting
      I made an informative video for Celiac Awareness Month that demonstrates how small 20ppm is. Am I allowed to post a vimeo link? Thanks!
    • Celiac Awareness on NBC Nightly News
      http://www.nbcnews.com/nightly-news/video/celiac-disease-affecting-millions-of-americans-often-goes-undiagnosed-692131907739   This was on last Tuesday. So happy that a popular national news program is spreading good information!
    • The US Preventative Services Task Force needs our help - tell them why Celiac screening is important!
      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer) First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here. http://www.uspreventiveservicestaskforce.org/Page/Document/draft-recommendation-statement150/celiac-disease-screening
    • New to this--first gluttened exp. How to feel better?
      Just adding to what others have said.  It does take some time but it's likely you will start to feel better.  It took me about a year but now I feel great.  A good probiotic might help.  I use one from Synergy that my naturopathic doctor sells at her office.  I have gotten in the habit of emailing restaurants before I try them and have had very good luck.  One owner of a very popular restaurant in my area took the time to reply and said she had Celiac disease (she sent great detailed info about their food).  Many of the people responding will even tell you who to ask for when you come in.  Good luck and hoping you feel better soon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,738
    • Most Online
      1,763

    Newest Member
    Ladywolf
    Joined