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
      104,337
    • Total Posts
      920,448
  • Topics

  • Posts

    • Hi everyone! I'm feeling very frustrated. I have been dealing with GI upset, bloating, very painful gas(that is hard to release), alternating from constipation to diarrhea for a long time now:(... my symptoms seem to be getting worse. Sometimes I get painful spasms located on my upper right quadrant of my stomach and low grade fever. I recently went to a GI doctor and he put me on a lactose free diet. He said I might be lactose intolerant and may have IBS. He did not think I would have celiac. I did relatively well on the lactose free diet for 2weeks.This diet alleviated some of my gas discomfort. Also, he had me get blood work for celiac, ulcerative colitis and H pylori. My bloodwork was positive for celiac disease. The antibody TTG was high 36.6, which is specific for celiac. My C-reactive protein was high as well 13.4--Norm is 2-7(C-reactive protein checks for inflammation anywhere in the body). They called me and told me I had to get an upper endoscopy, which biopsy showed up normal. So should I just leave it like that, or go to a different doctor and get a different opinion? I'm just wondering why TTG antibody-A  was elevated. I'm so frustrated and I really don't want my symptoms to get worse... is there a lot of false negative biopsy? What should I do:(??? Should I just give up...
    • It's all very frustrating.  I had the skin prick tests done last year and they told me I had no allergies, but I have reactions all the time, such as itching, watery, runny, itchy eyes, digestive issues, stomach cramps, IBS-type symptoms,  mental fogginess, etc.   I had blood tests done by a naturopath a few years ago and my worst food intolerance was wheat/gluten by far.  The naturopath found several other reactive foods but said most of them were mild compared to my reaction to gluten.  I looked online at the ingredients for both products, but it's confusing, the main ingredients shared by these two products were brown rice flour and potato starch.  I've used brown rice in baking with no problems, it could be the potato starch, which I don't often use, but I don't have any reaction to eating real potatoes.  
    • It starts as a piercing itch and the skin turns reddish with a few tiny red bumps. Then tiny watery vesicles appear and itch like crazy. The whole process from start to finish is about 3 weeks and the lesions leave a purplish skin tone and scab. I get them on the back side of both knees near the bend.  Sometimes it's just a few scattered vesicles in the same area. I've had Drs say eczema or herpes. My next step is to find a dermatologist familiar with dh. Thanks for the input.
    • DH can look like that but other things can as well. It would help if you described the way it acts/presents. You can get a dh biopsy. Read threads in this section to find out how the biopsy is done correctly. 
    • my celiac was triggered by pregnancy.  had no clue.  symptoms creeped up (started with indigestion, deemed as 'colitis' or 'ibs') but eventually all the ones you mentioned above all joined the party.  sounds like you are headed in the right direction.  one of the points of diagnosis is the reaction to the gluten-free diet.  keep digging.  half the people on here don't have a firm diagnosis (science really needs to catch up with this disease)  and a false negative blood test is fairly common, for whatever reason - if you've not been eating gluten every day for like 8 weeks, it may not detect antibodies, which is what these tests are measuring.  sorry you're having this dilemma!  hope you find some answers.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,396
    • Most Online
      1,763

    Newest Member
    Carmen30
    Joined