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

New And Frustrated


wilkjo1

Recommended Posts

wilkjo1 Rookie

I have to boys who are casein, gluten, soy, and everything else free, so you would think I would be a whiz already with my diagnosis, but no. I have only been at this for myself for two months. I went from creamer to soy milk in my coffee and from my whey protein powder to soy. I am thinking I may have a problem with soy since I am bloated up. The gluten caused esophogeal spasms. The dairy causes that and bloating. I am wondering once you finally figure out all the things that cause something, how long does it take your gut to heal? My boys were metal poisoned and autistic so their issue is a little different. My husband has many IGE allergies as well as the boys. I am clear for IGE, but what a pair my husband and I make. :rolleyes: Any info on how long it will take before I no longer look nine months pregnant while only weighing 105lbs would be appreciated.


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Hi, New and Frustrated, I am Older and Grumpy. I still cannot handle well being outside when it is over 110

daphniela Explorer

I read somewhere that if your intolerant to milk, their is a good possiblity you will be intolerant to soy. I would avoid the soy and stick to coconut and almond milk. Check the labels on the almond milk many of them contain soy.

wilkjo1 Rookie

Hey guys, thanks so much for responding. I will definetly avoid the soy and see what happens. I am well versed in the gluten free part of the diet and such, because of the boys. We even mill our own flour. I still can't figure out why this all happened. Are you guys hypothyroid as well? What other foods have given you problems?

ang1e0251 Contributor

I disagree that just because you are lactose intolerant you also cannot tolerate soy. I've lactose intolerant for 33 years but have used soy daily for many years. If you can't handle soy, but don't assume you can't unless you try it. If you like it like I do, it's a good solution and available in any grocery store.

Many people reported that it takes some time for their bloating to go down. Are you sure you are avoiding dairy completely? Are you getting some sneaky gluten in an unexpected way?

wilkjo1 Rookie
I disagree that just because you are lactose intolerant you also cannot tolerate soy. I've lactose intolerant for 33 years but have used soy daily for many years. If you can't handle soy, but don't assume you can't unless you try it. If you like it like I do, it's a good solution and available in any grocery store.

Many people reported that it takes some time for their bloating to go down. Are you sure you are avoiding dairy completely? Are you getting some sneaky gluten in an unexpected way?

Hi, Unfortunately since I have stayed away from soy the last four days the bloating is gone. I did like the soy milk a lot. I dropped the dairy shortly after the gluten, because it also caused esophogeal spasms. In the meantime my boys are a lot happier, because Mom is like them just for a little different reason. I am hoping that the dairy is temporary for me. The doc said if my villi heal that I may be able to have the dairy again. From the blogs I have seen, I am not so sure about that. I am going to check into hazelnut milk. Almond milk is ok, but watery. I know if any gluten were getting in my boys would be sick, so I think were ok there. I even changed my make up to gluten free. My boys react through skin absorption and I wasn't sure if I would. How long before your stomach healed?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.