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

VydorScope Proficient

Just got the fax from my blood tests, and its shows NO reaction to anything. 0's arcoss the board.

:(

tested on this test was: Whey, Egg, Wheat, Oat, Corn, Beef, Soy, Tomateo, Beef, Casien

I just dont understand it. I was sure milk was an issue, how could it not be? Ugh. Why cant ANY objective test ever work out for me???


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

You may have an intolerance to casein or another food.

VydorScope Proficient
You may have an intolerance to casein or another food.

Casien was tested, test shows no problems with casien.

Carriefaith Enthusiast

Did you have allergy tests and intolerance tests?

VydorScope Proficient
Did you have allergy tests and intolerance tests?

This was the IGE blood test.

Ursa Major Collaborator

Vincent, I think a lot of the time intolerances can't be tested for. The only way to figure them out is by an elimination diet. And since you already know that dairy causes you problems, just don't have any! Just another inaccurate test, so what! You need to just believe your own common sense. You already knew the answer before the test, so ignore the test and get on with what you know you need to do.

When I was tested for allergies and intolerances, not even wheat showed up! Neither did a lot of my worst intolerances. Will I now eat those things, because they didn't 'officially' show up on a test? Of course not, I know what those things will do to me, whether a doctor agrees or not. Listen to your body, no doctor can feel the effects from foods for you.

jerseyangel Proficient

I really understand your frustration--I am intolerant to so many things now, it's not funny. I know you don't want to hear this, but I finally figured it out by listening to my body--if I react to something twice or so, I cut it out. In time, I will probably try again--one thing at a time. For now, I'm trying to just feel good on a daily basis, and hopefully heal my intestinal tract. I had some testing done, but in the end, my reactions are the most reliable markers for me. I miss a lot of foods, but I really want to get well once and for all--so I do what I have to do. Just my take on the whole thing :)


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



Celiac.com Sponsor (A8-M):



jaten Enthusiast

I can only imagine the frustration you must feel. Why don't the tests reflect what your body tells you?? Who knows. Like the others are saying, let your body be the guide, not the tests. Your body will thank you for it.

If we see it raining outside, we believe it's raining outside, even if a meteorologist hasn't told us so. If you're body behaves badly to certain foods, you know you're intolerant to them, even if the dr. doesn't tell you so.

Best wishes.

VydorScope Proficient

WEll the thing is I am not getting better, and I have never had a postive test for ANYTHING in all my years of being sick. Nothing. So what am I missing????

Not feeling very encouraged right now.

jaten Enthusiast
WEll the thing is I am not getting better, and I have never had a postive test for ANYTHING in all my years of being sick. Nothing. So what am I missing????

Not feeling very encouraged right now.

Have you tried going to a very plain meat/veggie/fruit diet? I have found I do the very best with no processed foods. It's a little hard to do but it might help you. Really nothing processed other than perhaps a little salt/pepper on some broiled chicken. Then slowly, ever so slowly add back foods one at a time. I'm a fine one to talk if you look at some of my other posts because my own digestive tract in a terrible state just now. (My problem may be gallbladder or it may be I added foods back too fast or some combination of the two)

I do feel your pain very literally right now. Best of luck to both of us in our pursuit of healthy bodies.

Mango04 Enthusiast

That's a frustrating situation but I can relate. I've never tested positive for anything (except a celiac gene) but when I eat gluten, dairy, soy and processed foods I feel horrible. If I stay off those foods I feel great! I think our bodies tell us more than those dang tests anyway.

Guest nini

my own IgE tests showed absolutely no food intolerances or allergies either... but OBVIOUSLY I can't have wheat... and there are certainly other foods that are suspect...

I take it that they are just not very reliable

VydorScope Proficient
my own IgE tests showed absolutely no food intolerances or allergies either... but OBVIOUSLY I can't have wheat... and there are certainly other foods that are suspect...

I take it that they are just not very reliable

I need pull my son's blood test results, cause as I recall he had a 0 IgA and strong postive on IgE for celiac disease panel. I think I am remebering that right. His reaction is fast and odvious though. Not in a mystery wolrd like his father.

Carriefaith Enthusiast

Have you thought of getting tests through enterolab. If you find them too expensive, I suggest trying eating a diet with no common allergins for about 2 weeks and then add one new food each day and see how you feel.

VydorScope Proficient
Have you thought of getting tests through enterolab. If you find them too expensive, I suggest trying eating a diet with no common allergins for about 2 weeks and then add one new food each day and see how you feel.

Yes many times, but way out of reach price wise. And realy since we aviod nuts due to my wife, and gluten, and egg, and have been avioding diary.. and ust plain dont like soy... not a rice fan either..thats most of the list already.. whats left? Corn? If corn syurp counts, then prbly have corn every day :)

Carriefaith Enthusiast

Do you eat a lot of mainsteam foods? You may be just sensitive to very small amounts of gluten in some maintstream products. There are some mainstream products that some people with celiac disease can tolerate, but I cannot tolerate. Sometimes, the reactions maybe from dairy contamination and not from gluten. Here is a list of products that I have reacted to:

Humpty Dumpty Chips

Lays Products, I suspect dairy contamination

Butterball products, bacon and franks

Maple Leaf, all beef hot dogs

Bob's Red Mill, flaxseed

Amy's products, I suspected the soups and chili

Lundberg rice chips, I just don't feel right after eating those chips, I feel like I've had gluten

Campbell's, I suspect their chicken and rice soup has some gluten

Just a thought :)

Guest nini

another thing I've found I cannot tolerate is adulterated meats... I have to eat clean meats, ie: meats that are raised without any hormones or antibiotics and minimally processed. I get quite ill if I eat normal commercial meats, especially poultry. I tend to stick with Springer Mountain Farms Chicken from Publix and their "clean" pork and beef from Maverick... good stuff. If you have allergies to antibiotics or hormones it would make sense that you would have problems with adulterated meats. Besides, it just tastes better.

VydorScope Proficient

What I think I know at this poitn...

I think I was getting a little better being gluten-free. Got sick after eating out once or twice, but figured DUH, CC in the back room. Then one day I got realy sick. Felt the worst I have in a long time. That day I had done somehing I rarly due... drank a full cup of whole milk (but add hersey carmel syup). I have tried milk since then but not had that drastic of a response. Wondering if it was CC in the syurp? I dunno. I threw it out. I think I take a long time to recover form gluten, much longer then 2 weeks. If I could just get to a point where I was better I could then maybe figure somthing out.

I am droping lunch meat from my diet for now, maybe its one of those stupid chemicals. But I am running out of things I CAN eat.. already down 7 pounds, I relay cant afford to loos much more. TO thinkI was once 40 pounds over wieght and now I am worried about being to little LOL life is funny at times!

Guest nini

yeah... I was just getting grief from my hubby about me losing too much weight! LOL! (I think I could still stand to lose a few) but he thinks I've lost too much already!

I get Applegate Farms lunchmeats from Whole Foods or my co op... they don't last as long so you gotta eat them quick, but they are def. gluten-free and antibiotic/hormone free as well as nitrite and nitrate free... Whole foods usually has them in the deli so you can get smaller amounts... (they are pricey though)... I also get Natural Sea tuna fish... no nothing added! just tuna in water... Applegate farms even has a yummy Sunday bacon that makes my mouth water!

VydorScope Proficient

NO whole foods in town, and Wild Oats is to far for foods that dont last. Only go out there 1 per month. :(

Guest nini

sorry... :( you need a Whole Foods in town!

VydorScope Proficient
sorry... :( you need a Whole Foods in town!

Over a year a go tthe annouced they were comming "soon", still no sign of them.

Carriefaith Enthusiast

Maybe avoid eating out for a while, at least until you start feeling better. Also, if you are running out of food ideas, you could try some of my recipes. They are quite good!

Open Original Shared Link

VydorScope Proficient
Maybe avoid eating out for a while, at least until you start feeling better. Also, if you are running out of food ideas, you could try some of my recipes. They are quite good!

Open Original Shared Link

Have not eaten out in weeks, but more due to money then sickness. I grew up on cheeseburgers and pizza, so I am a bit lost trying out all thise complicated diet stuffs heh. I am wondering more and more about what you said, Maybe I am more senstive then I think I am. I just wish I could have some object test resutl to point ot and say AHA thats a 234329234.3 and over 2 is diagnostic, so there I go! But it seems that will never happen.

Guest Robbin

Vincent, I think you may have enzyme defiencies. My sons both have severe reactions to dairy, but the tests were negative, and the dr. said it was an enzyme deficiency problem. Also, if you have been ill a while, the enzymes to digest other foods can be severely depleted. The only way to really get better is to avoid the foods for awhile and perhaps take an enzyme supplement until you feel like maybe trying the food again. There are so many enzymes for different foods that are involved in digestion. I use V-gest for beans, grains, and vegetables since for a long time all foods except meat seemed to make me sick and hurt and I guess it was from such a long-term battle with the big D. My youngest has had to take 2 extra strength lactase tabs for years just to eat a 1/4 c. milk on his cereal, but it makes a huge difference. Also, the brand made a difference with him. I bought some generic store brand tabs and they didn't seem to help much, the regular Lactaid wasn't much better, so I recently tried the Vitamin Shoppe lactase enzyme and they are so much better and quicker acting. I hope this helps, my family has been through the same type of issues, and it makes having a meal together a frustrating experience. Take care :) .

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.