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

Update On Scaredandworried


Scaredandworried87

Recommended Posts

Scaredandworried87 Newbie

just thought id let everyone know about my biopsy, they found nothing wrong so any ideas what i should ask my gi doctor next?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

The next thing you do is start the gluten free diet in earnest, no cheating, no slip-ups, no cross-contamination. Read every label, check all your personal care products, get rid of wooden and plastic spoons and scratched nonstick pans, buy a new toaster and colander. You don't even have to tell your GI because he will probably tell you if you are not a celiac you don't need to do this. But we are telling you that 99.9% most likely you do. You seem to be a non-celiac gluten intolerant. Or just not sufficiently damaged yet to test celiac.

As for the weight issue, there seem to be two reactions to gluten intolerance while still eating gluten. For one type of person, the nutrients are not absorbed and the weight just falls off. For the other type of person, the body says, Whoa, wait a minute, I am not getting what I need, must be a famine going on here, I've got to hold on to everything I can get, and the weight piles on. For both types, once gluten is eliminated the weight seems to stabilize. The losers gain and the gainers lose. So just hang in there and give things a chance. :)

lilbit Apprentice

just thought id let everyone know about my biopsy, they found nothing wrong so any ideas what i should ask my gi doctor next?

Question- Did you actually see your biopsy lab results? My GI doc told me that there was nothing wrong and I requested my lab results... and whaddya know... I had celiac!

Don't forget- Celiac is notoriously difficult to diagnose! Best of luck!

ravenwoodglass Mentor

The next thing you do is start the gluten free diet in earnest, no cheating, no slip-ups, no cross-contamination. Read every label, check all your personal care products, get rid of wooden and plastic spoons and scratched nonstick pans, buy a new toaster and colander. You don't even have to tell your GI because he will probably tell you if you are not a celiac you don't need to do this. But we are telling you that 99.9% most likely you do. You seem to be a non-celiac gluten intolerant. Or just not sufficiently damaged yet to test celiac.

As for the weight issue, there seem to be two reactions to gluten intolerance while still eating gluten. For one type of person, the nutrients are not absorbed and the weight just falls off. For the other type of person, the body says, Whoa, wait a minute, I am not getting what I need, must be a famine going on here, I've got to hold on to everything I can get, and the weight piles on. For both types, once gluten is eliminated the weight seems to stabilize. The losers gain and the gainers lose. So just hang in there and give things a chance. :)

I second everything Mushroom has said and she has said it very well. Please do give the diet a good strict try.

Weight wise I am in the second group. I thought I was just gaining weight because of my age, late 40's at diagnosis. I couldn't figure out how I gained so much when I had constant D but I was at my heaviest in my life the year before diagnosis. Now 8 years later I am at about 5 lbs more than I was in my teens. I did freak out at first cause I seemed to lose weight too quickly and was concerned something else was going on. I even fought to regain 5 lbs at one point (used Wylde pretzels to do so) but have stopped worrying about it and slowly went back down to the weight I am now and have held steady for a couple years now.

Scaredandworried87 Newbie

ok to be honest is there just truely such a thing as only being gluten free not soy, dairy, meat, nut or all these other wacky things i see on peoples profiles i mean it just seems to me like once you eliminate gluten you have to eliminate everything else and to be honest im completely alone here i live at home where gluten reignns supreme and ive tried and tried again to tell them about my symptoms but once theyve heard that i had a negative biopsy they tell me to move on. then there is the fact only make $700 every two weeks and cant afford to move out

ravenwoodglass Mentor

ok to be honest is there just truely such a thing as only being gluten free not soy, dairy, meat, nut or all these other wacky things i see on peoples profiles i mean it just seems to me like once you eliminate gluten you have to eliminate everything else and to be honest im completely alone here i live at home where gluten reignns supreme and ive tried and tried again to tell them about my symptoms but once theyve heard that i had a negative biopsy they tell me to move on. then there is the fact only make $700 every two weeks and cant afford to move out

Yes there are folks that are only gluten free. Not everyone has other intolerances even though it may seem that way. Most of us do have to eliminate dairy at first because the same area that gets damaged by gluten helps us to digest dairy. Many are able to safely add it back in. For now just concentrate on eliminating the gluten then if you are still having issues after a few months then worry about the possibility of other intolerances. I had a great deal of healing gluten free but I increased my soy consumption greatly. The issues were minor compared to gluten, for me, but it the end it has helped me to avoid soy.

It is possible to be gluten free on a limited budget. I live off $50 less every two weeks than you do and rely on mostly whole foods and frozen single ingredient veggies. The gluten free specialty foods like breads, pizza crusts, cakes etc are very pricey so I don't get them often. I use quite a bit of rice and rice noodles, which I get in the Asian section of my store, instead of the more expensive specialty gluten free pastas.

You do need to get your own toaster and be careful of cross contamination if you are living in a gluten household.

Skylark Collaborator

ok to be honest is there just truely such a thing as only being gluten free not soy, dairy, meat, nut or all these other wacky things i see on peoples profiles i mean it just seems to me like once you eliminate gluten you have to eliminate everything else and to be honest im completely alone here i live at home where gluten reignns supreme and ive tried and tried again to tell them about my symptoms but once theyve heard that i had a negative biopsy they tell me to move on. then there is the fact only make $700 every two weeks and cant afford to move out

I had to eliminate soy and dairy at first to feel well. My gut was just such a mess from the gluten. After about a year, I tried them again and had no reactions. Now I eat anything I like, as long as it has no gluten.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,026
    • Most Online (within 30 mins)
      7,748

    Amari Love
    Newest Member
    Amari Love
    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
      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.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.