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Baffled


VydorScope

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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!


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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!


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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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