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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,589
    • Most Online (within 30 mins)
      7,748

    MM-110722
    Newest Member
    MM-110722
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.