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

Baffled


VydorScope

Recommended Posts

Ursa Major Collaborator

Vincent, I can just see how frustrated you must be by now, and totally understand (I have hardly anything left to eat myself). I sometimes feel like 'this is ridiculous', and cheat (never on gluten or soy), but I always regret it. Because I end up in pain, or having rage attacks or get awfully depressed, depending what I had that I shouldn't. And it isn't worth it.

I found out some of my intolerances by testing with a device called a vega machine (some naturopaths have those). Some people claim it's quackery, but what I tested positive for was right on (even though it did miss a lot of things). My grandchildren used to have terrible eczema, and they were tested. When my daughter stopped giving them the foods they tested positiv for, their eczema cleared right up. My oldest granddaughter was covered from head to toe in this horrible itchy eczema (they'd put her to bed as a baby in a snowsuit with mittens and hood, so she couldn't scratch herself bloody), she looked and felt like she had scales! She has beautiful, clear skin now. Her biggest problem was dairy, the twins both are very intolerant to the nightshades, and one of them to soy. Anyway, to make a long story short, the vega machine testing is valid (even though sometimes you get a false positive, but it doesn't happen often).

A great enzyme combination (which you have to get from a homeopath or buy at a health food store is called Wobenzym N. It's made in Germany. It is supposed to be amazing, but didn't really help me because it has pineapple in it (high in salicylates). But I know it has done wonders for others, it contains quite a few different enzymes. It says to take it before meals, and somebody else with celiac disease told me, that it used to upset her stomach when she did that (and the same happened to me), but it made a huge difference when she started taking it AFTER meals. It seems to work better for people with celiac disease if taken right after meals.

I really hope you figure it out soon. And I agree, you might just have to do an elimination diet and start out with very basic foods. It will be worth it if you start feeling better. I will be praying for you!


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

I agree about the enzymes. You can get reactions from foods (for various reasons) and not be allergic to them. Also if you have an intolerance to casein its not going to show up in an allergy test (IgE). You can use Enterolab if you want to know for sure but listening to your body is still the best way to go. I have no IgE allergies but have many intolerances that are sometimes worse...sometimes better. I believe its an enzyme deficiency, leaky gut and yeast issue in my case. My Enterolab was negative for casein (barely)....it was a 9 with 10 being postive. I had been off dairy for 4 months before testing but since the test was negative I went back on dairy (limited). I gradually got worse over the past 6 months. After completely eliminating casein last week I'm now doing sooo much better and my body is less reactive to the foods I'm eating. Regardless of what the tests say my body is obviously very stressed out when I consume dairy and now its much happier and I'm functioning much better. Its amazing how quick some changes can occur when we eliminate one thing.

VydorScope Proficient

Where can I find more info on this emzyme issue?

TCA Contributor

Vincent,

Something you might want to consider: My kids can't handle dairy when they have gluten, but are fine on a gluten-free diet. I think the gluten damages the intestines enough give them problems and then they can't handle the dairy, but are ok once the damage is healed. If you were accidentally glutened, it could have caused a problem with dairy. Just a thought and an observation I have made.....

I'll be praying for you!

jaten Enthusiast

Two quick thoughts:

You mentioned corn syrup. We're all different, and you could run yourself ragged trying everything, but I'll pass along what I discovered, in case it rings for you. High fructose corn syrup sends me into spasms every time. I read a thread here where someone else said that, and I ran to the kitchen. YES! A common ingredient in some of the foods I should have been able to eat (gluten-free) that were causing me problems contained High fructose corn syrup. That's one I avoid now.

Nini I think suggested Applegate lunchmeats. I use those, too, and have to get them at the Wild Oats in Memphis (70 miles from me). I go about 1ce a month to stock up on foods. I toss 1 pkg in the fridge and the rest in the freezer. The open pkg needs to be consumed within about 5 days I think (someone correct me), but then I just rotate a new one into the fridge. The freezing doesn't seem to hurt them at all.

VydorScope Proficient

High Fruitcose Corn Syrup is in everything it seems. I tried avioding it once, but its alot harder then gluten to pull off.

jaten Enthusiast
High Fruitcose Corn Syrup is in everything it seems. I tried avioding it once, but its alot harder then gluten to pull off.

You're right, at least with a lot of processed foods! I'm not always successful, but I plan to try harder as of a couple of days ago. But if I cook my own chicken, fish, etc. and my own veggies in healthful ways, & eat fresh fruit rather than canned or frozen then it's easy to avoid. Could you try it for a few days? If you feel better, then it might be worth the extra work. I've also found that just changing brands for some products allows me to avoid hf corn syrup. It's a dilema (sp?) for sure. You sound as determined as I have become to feel better though.

The short version:

I was very sick. I was diagnosed. I went gluten-free. I noticed dairy and soy intolerances. I gave up dairy and soy. I felt better. I removed high fructose corn syrup. I felt even better. I added dairy and to a lesser extent soy back into my diet. The nose-dive began.

Next week I have to have a couple of more tests. In the meantime I am dedicated to avoiding everything I've suspected as causing a problem for me. I will be healthy.

Please keep us informed. We're all concerned and I have learned so much from reading about others' experiences. Good luck!


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
      132,029
    • Most Online (within 30 mins)
      7,748

    Nancy N Rosen
    Newest Member
    Nancy N Rosen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.