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

So...i Have Gone Gluten Free...its Not Working Out.

abbypanda

Recommended Posts

abbypanda Newbie
abbypanda
Posted

I saw a DR. back in October. He did a blood test on me and it was positive, so he also checked my small intestines and confirmed my diagnosis of Celiac Disease.

I went on a gluten free diet using resources and this site. It was GREAT for the first month or so. The day I went off gluten I noticed an immediate change.

But since, I have had problems with my stomach bloating. (that was my major symptom). My stomach has beel bloated w/ out rest for 3 months straight now. I didnt even have it this bad when I ate gluen.

The only thing I can think is that my healing intestines are having a large reaction if I come in contact with a small amount of gluten.

I cook all of my food when I can. I travel for work and I am very picky about where and what I eat, but I realize sometimes theres the possibility of crosscontamination.

But even w/ a miniscule amount of cross contamination, should I be feeling this way.

It is really interfering with my daily life!

Thanks for the help :(

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

Celiac.com Sponsor (A8-M):


Debbie65 Apprentice
Debbie65
Posted

Hi,

I´ve read here that once you go gluten-free you become more sensitive to gluten and even a small amount can cause a bad reaction. It´s really important to go 100% gluten-free as even if you get no noticable reaction you are slowing the healing process so try to be really vigilant.

I´ve also read that us people with celiac disease are more susceptible to other intolerances so you might want to look there for a solution,also at first diagnosis, especially when the villi are still damaged dairy foods often cannot be tolerated. I´ve read that these can often be reintroduced once recovery is underway.

Hope that helps a little while you wait for more experienced members to get back to you.

AndreaB Contributor
AndreaB
Posted

Aside from the possible cc that you already mentioned, two other big culprits are dairy and soy. If you eat them try cutting out one for a month and note any changes and then the other (but don't reintroduce the first one you go off of). Note any changes and stay off both for at least two months, preferably longer (4-6 months) and then reintroduce a month apart and see if you notice any difference in how you feel.

I posted an article on soy intolerance in the Leaky Gut Other Intolerances section if you want to look at that. Don't give up, keep going forward. If you go back to gluten you will only get worse and much sicker.

I read on a different thread (I forget who posted) that it takes three weeks for a person's body to recover from a glutening. Even if physical symptoms don't last that long. Even miniscule amounts can cause a lot of trouble for your body. I was never one that had obvious symptoms and now I notice cc, get tummy troubles for about a day and it's over. It just amazes me.

mythreesuns Contributor
mythreesuns
Posted
But since, I have had problems with my stomach bloating. (that was my major symptom). My stomach has beel bloated w/ out rest for 3 months straight now. I didnt even have it this bad when I ate gluen.

I have had terrible problems with bloating due to milk products. That was actually my first stab at trying to feel better--eliminating all milk from my diet. That has helped tremendously with the bloat.

And now that I'm gluten free as well, I no longer look "pregnant" LOL

Rikki Tikki Explorer
Rikki Tikki
Posted

Toni and Debbie:

I just love your signatures. They made me laugh this morning :lol::lol::lol:

abbypanda Newbie
abbypanda
Posted
  • Author

Thanks everyone for the replies. I will continue on my quest to stay 100% gluten free. I dont eat milk because my allergist said I'm allergic to milk and mold products. I didnt know that about soy though. I dont eat soy much but on occasion and have been lately so I will try that route and eliminate it.

Thanks again to those who replied.

abby

Guest nini
Guest nini
Posted

it sounds like you are not 100% gluten free and probably still getting hidden gluten in your system from either cross contamination or personal care products like shampoos, lotions, makeup, etc...

also, mos Celiacs are lactose intolerant until the villi begin to heal (which for me was about 6 months) and some continue to be lactose intolerant. Other food intolerances often make their presence known after going gluten-free.

You need to be 100% gluten free all the time, if this means only carrying your own food and not eating out, then that is what you have to do. For me the risk of cc is too high at most restaurants. Even if I'm very picky about what I order.

Keep in mind that AVERAGE healing time is a MINIMUM of 2 years for most of us and for some of us that have been sick all our lives, it takes longer than that. Just keep sticking with the diet, constantly read labels, verify items every time as ingredients change, or stick with a diet of foods that are naturally gluten-free like fresh fruits and veggies, clean meats, pure herbs for seasoning, Olive oil for cooking, rice, potatoes, nuts and beans... if you make everything from scratch and know what is in it, you drastically reduce your risk of cross contamination.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.