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Tranquillity

Symptoms And Questions Of Other Intolerances/allergies

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Hi everybody.

I've been gluten free for almost a week now, and I'm feeling worse rather than better. Withdrawal, I guess.

Anyway, I simply can't wait for weeks or even months before realizing "this didn't work", so to speak, I want to feel better NOW, like most of us.

Here's my first thread, with symptoms etc: http://www.glutenfreeforum.com/index.php?showtopic=39764

I'm thinking about eliminating some other common trouble foods as well and see what happens. Casein is going to be a HUGE pain, and corn as well. Soy isn't easy either, but probably the easiest out of the three.

Now... What are some common symptoms if you can't take soy/casein/corn? From what I've read, soy usually cause skin trouble (rashes, hives), etc. I have psoriasis (since childhood), but I doubt soy is to blame.

My main symptoms, that I want to get better from, is the CONSTANT extreme dizziness/nausea combo. I hate it! Can't do anything (see the thread above). I've "only" had it about 6 months, which is a VERY long time when you're basically disabled. :(

There is waaaay too much information to read on this, I could spend weeks reading and still not feel sure. So, I ask you, what kind of symptoms do these things usually cause?

Anyone had anxiety/dizziness from soy, for instance?

PS. Gluten free foods usually use soy, corn and milk instead of gluten/wheat (as I'm sure you know). Very annoying when you want to cut 'em all out! DS.

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Tranquillity,

You really should try gluten free first and give it time--one week is not enough time. If you give up everything at once, you will not know which thing actually is the problem. One week is not a fair trial and as you have already stated in the other thread, you really were still getting some wheat. After that fact, it takes time for our bodies to get rid of the gluten that is inside, everything takes time. Some people feel better very quickly, some take a few weeks, some even take a few months, some longer. It depends on the damage, how quickly your body can heal--so many factors. Patience is a very difficult trait, I know. You didn't get this sick overnight and you will not feel better overnight. I wish I had a magic wand and could make everyone feel better with one swipe of my wand.

Have your read anything about the elimination diet, maybe that is something you could try in time. I truly think you need to give gluten free a little more time though. It's up to you though.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Hi again!

I'm pretty much in the same boat you are. Still trying to figure out what's causing what. I've been off gluten/soy/dairy/eggs/citrus/peanuts/etc... for about a month now. Have been doing an elimination diet and am slowly reintroducing foods, one at a time, to see if there are any reactions. So far, I've had a whopper of a reaction to gluten(wheat) and irritating, yet relatively minor, reactions to corn, dairy, and refined sugar (of all things). From what I've been learning, food intolerance symptoms vary from person to person, so trying to narrow it down that way isn't probably going to get anywhere.

There could also other issues that causing your symptoms as well, particularly if they're ongoing. A lot of thyroid/adrenal folks also have nutritional deficiencies, particularly iron, vit D, and B12 and folate. We don't really know why, so far. It just seems to be the nature of the beast. It probably wouldn't hurt to get a full nutritional panel and an iron panel done (and make sure they test ferritin, not just serum iron), to see where your levels are, particularly since you also now have a problem with gluten and are probably having malabsorbtion. I wouldn't start supplementing wtihout getting the testing done, as high levels of these, particularly the iron, vit D and folate, can cause as many or more problems than they solve.

Also, are you eating enough? Do your symptoms get better when you eat? I tend to be hypoglycemic and some of my first symptoms are nausea/dizziness and then the shaky feeling/headache comes on.

As for all the stuff in gluten-free products, yeah its a pain. I avoid soy anyway because its a goitrogen; i.e., suppresses thyroid function. Fermented soy products (like miso, tamari sauce, and tempeh) seem to be ok for most thyroid folks since the goitrogens are mostly destroyed during the fermentation process. The same goes for soy lecithin and soy oil. They're ok for most thyroid folks. Unfortunately, if you're sensitive to soy, none of this is going to help. Corn is another one used a lot in gluten-free products. This one hurts! What I wouldn't give for a gluten-free, corn-free, soy-free, yet still tasty tortilla.

I'm finding out the best way around the gluten-free products is to just eat a simple diet of whole foods. Lots of veggies, some fruit, rice, chicken/fish, the occasional serving of red meat or pork, seeds and nuts. Breakfast has proven to be the biggest challenge. Thank goodness for buckwheat (and honey). This all might sound boring, but it really isn't. Fortunately, garlic and herbs are still on the menu! I'm reserving the gluten-free products as a special treat, rather than making them a main part of my diet. Gluten-free products tend to be higher in calories (and much more expensive!) than their regular counterparts as well.

Hope this helps some. :)


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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Tranquillity,

You really should try gluten free first and give it time--one week is not enough time. If you give up everything at once, you will not know which thing actually is the problem. One week is not a fair trial and as you have already stated in the other thread, you really were still getting some wheat.

Indeed. Don't get me wrong though, I'm definately not adding gluten back. I might do a reaction test in a few months in case I don't notice a difference (at all), but not more than that.

One week isn't enough, I know, but on the other hand, I'd rather eliminate too many foods and try to add them back, than to give each a try for several weeks - it simply takes too much time. :/

In any case, I'm going to look through everything, "gluten free" or not, for any form of wheat as well.

There could also other issues that causing your symptoms as well, particularly if they're ongoing. A lot of thyroid/adrenal folks also have nutritional deficiencies, particularly iron, vit D, and B12 and folate.

I have had those levels checked, except Vit D, and they're all high - some perhaps too high.

Vitamin D deficiency is likely from the perspective that I never get any sun, but some other things don't quite match... Still, I should definately check that out, thanks.

Iron, on the other hand... My iron level is TOO high, but my ferritin (and transferrin) is borderline low. I'm trying to find out what the heck that means, lol.

Two important quotes I have to check out:

"Also, a high folate level can cause a false increase in B12 level and mask a deficiency...which is why the methylmalonic acid and homocysteine tests become important."

"A percent of saturation of more than 40% and/or a serum ferritin of more than 150 are considered suspicious for iron overload/hemochromatosis. It is important to note that in some patients, the percent of saturation can be quite high while the ferritin rather low (this is often the case in children or young adults in their 20's)."

Both these might match me. My folate level isn't abnormally high, but at least I'm definately not deficient (3 times the minimum level). Same goes for B12, UNLESS the B12 level is falsely raised for some reason (i.e. high folate).

Regarding the iron overload, my transferrin saturation (Tsat%) is 72%, way more than 40% that is used for screening, and I am a young adult in my 20's, so who knows. Yet another thing I plan to have checked.

Also, are you eating enough? Do your symptoms get better when you eat? I tend to be hypoglycemic and some of my first symptoms are nausea/dizziness and then the shaky feeling/headache comes on.

Good questions :)

I'm not sure if I eat enough to be honest. Could be better, I'm not sure if if's bad enough to cause trouble, except a (very) slow decline in weight, that I plan to reverse when I feel a bit better.

I had some kind of "attack" yesterday after eating my midday snack, might have been hypoglycemia, I don't know for sure.

Breakfast has proven to be the biggest challenge. Thank goodness for buckwheat (and honey). This all might sound boring, but it really isn't. Fortunately, garlic and herbs are still on the menu! I'm reserving the gluten-free products as a special treat, rather than making them a main part of my diet. Gluten-free products tend to be higher in calories (and much more expensive!) than their regular counterparts as well.

Hope this helps some. :)

Of course it helps :)

Breakfast is probably the least of my concerns, as long as gluten is all I'm not eating. If I have to remove corn and/or casein, things become a lot tougher!

I've got both gluten free muesli and gluten free corn/buckwheat-flakes, both of which are truly gluten free, and I like them both :)

Removing corn and casein would mean removing both of those, not to mention the milk!

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