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

Better...then Worse?


amg2389

Recommended Posts

amg2389 Newbie

My doctor told me she thinks I have Celiac a little over two weeks ago, so I started a strict gluten/dairy-free diet. My symptoms were severe bloating, continual burping, and a fermentation in the stomach. Immediately after I started the diet, my symptoms improved dramatically. I was feeling really good about the gluten-free diet and thought that I had finally figured out what was wrong. But about a week and a half after starting the diet, my symptoms returned as bad as ever and have occurred the past two days. I haven't changed my diet, and as far as I am aware, I haven't been eating any gluten. Is this normal? Did anyone experience anything similar to this when first starting a gluten-free diet?


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



Celiac.com Sponsor (A8-M):



leadmeastray88 Contributor
My doctor told me she thinks I have Celiac a little over two weeks ago, so I started a strict gluten/dairy-free diet. My symptoms were severe bloating, continual burping, and a fermentation in the stomach. Immediately after I started the diet, my symptoms improved dramatically. I was feeling really good about the gluten-free diet and thought that I had finally figured out what was wrong. But about a week and a half after starting the diet, my symptoms returned as bad as ever and have occurred the past two days. I haven't changed my diet, and as far as I am aware, I haven't been eating any gluten. Is this normal? Did anyone experience anything similar to this when first starting a gluten-free diet?

I am in the exact same boat as you as we speak. I started a thread like this in the 'Coping' section.

The first few days I felt great - now it's just a little over a week since I started and I feel terrible. I'm starting to second guess myself but everyone here has been telling me to keep with it so I'm trying! I'm anxious to get the tests from Enterolab too and that's not helping :P

Hang in there! It gets better!

curlyfries Contributor

The best thing to do would be to start a food journal. I see you also went dairy free, but some people also have problems with soy. For me it was sugar.............including fruit, rice and rice pasta. Others have issues with nightshades. You could also be getting gluten from somewhere you're not aware of.......vitamins, shampoo, toaster, skillet, etc. Do you drink a milk substitute? I don't but have read that there is one that is labeled gluten-free, but really isn't......the name escapes me at the moment.

Good luck and welcome!!!!!!!!

CamiJ Newbie

I'm having the same problem - but I was not diagnosed celiac (just damaged villi). Anyway, I was trying to figure out what else causes damaged villi and celiac-like symptoms. Ravenwoodglass suggested to me to cut dairy and soy as well as gluten. I looked into that further too and I came across this article.

Open Original Shared Link

The author talks about the "big 4": gluten, casein(dairy), soy, and corn. He actually calls them the 4 horses of the Apocalypse - and he believes that the majority of the world's chronic conditions and diseases can be linked to intolerances to these foods. Anyway, I know it's not a terribly scientific source, but he does have some interesting points. I noticed doing a google search of "GFCFSFCF" (gluten free, casein free, soy free, corn free), that cutting these allergens has been useful in treating autism, epilepsy, and a number of other conditions. The author of the article has celiac, and he said that when those with celiac fail to do well on the gluten-free diet, they can often find relief cutting out the rest of the big four. All four, he says, have similar molecular properties, and all are capable of damaging villi. (He also notes similarities to properties of MSG and aspartame (all contain glutamates)- which have been known to cause problems too. I personally cannot tolerate MSG - bad headaches!) Anyway, what I thought was really interesting was this:

He says:

------

"The fact is that the Mayo Clinic and Johns Hopkins University published their incidence studies last year and found celiac disease to afflict 1:122 Americans. Yes, that is the new

amg2389 Newbie

That is an interesting idea..I have had four good days in a row, so I'm hoping that something I ate unintentionally was the cause of the bad days. If I start having problems again, I will definitely look into getting rid of soy and corn too.

fedora Enthusiast

It is hard at first to be 100% gluten free.

My pickles weren't gluten free, then much later realized that pickled ginger can have barley in it. I accidentally to a sip of my son's minestrone soup thinking it was lentil. I put my fingers in my mouth after cleaning up my son't soy sauce. ugh.

I stopped eating out completely for awhile. I stopped eating dairy and then figured out I have a hard time eating many nuts(though nut milk is fine).

Give it time, and good luck

Archived

This topic is now archived and is closed to further replies.

  • 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. - chrisinpa commented on Scott Adams's article in Additional Concerns
      3

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    2. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,491
    • Most Online (within 30 mins)
      7,748

    A.N.I.
    Newest Member
    A.N.I.
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.