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Fairy Dancer

Soy

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Hi

I went gluten and grain free (except white rice) about 3 months back. At first I saw an improvement but then, as I pulled in new foods to replace the grains I had taken out, I started to feel ill again with the same old symptoms...ie stomach pain, diarrhoea, dizziness regardless of whether I ate grains or not.

As a trial I pulled dairy out of my diet...no change.

Then I noticed that I would get the stomach pain after eating a brand of gluten free dark chocolate. In the case of some gluten free gravy mix I actually vomited and came up in a rash (raised red lumps) over my stomach and of course bread was still making me ill if I ate it. I was also having problems with some chocolate mousse etc that I had been eating that was labelled as gluten free as well as with foods like bean sprouts and corn.

Today I looked at the ingredients lists of the foods that seemed to set off the dizziness, rashes etc and found that they all had one common ingredient...Soy (except for the corn obviously which seems to be another food my digestive system does not like lol).

I am now considering trying a soy free diet and wondered if people knew of a good list of foods I should avoid. I am also wondering if it is worth staying off of grains? I am not officially diagnosed as celiac and decided on trying a gluten free diet because I was trying to find out what was causing my symptoms. I also have a brother with celiac and wondered if it ran in the family.

The thing is if soy was or is causing my symptoms is it likely that I am actually ok with grians after all? Or could I have issues with both. I did initially get some improvement from taking grains out so that does make me wonder. Any advice appreciated...

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I am not officially diagnosed as celiac and decided on trying a gluten free diet because I was trying to find out what was causing my symptoms. I also have a brother with celiac and wondered if it ran in the family.

The thing is if soy was or is causing my symptoms is it likely that I am actually ok with grians after all? Or could I have issues with both. I did initially get some improvement from taking grains out so that does make me wonder. Any advice appreciated...

First things first...celiac is a genetic autoimmune disease and so, YES, if your brother has it, you have an increased risk for developing it as well. Parents, siblings, children---all should be tested.

From celic.org:

"celiac disease occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease."

Before you continue to be gluten-free and experiment with elimination diets that are apparently not yielding you any results, you may wish to be tested and biopsied. It could be it's not any particular food that's the problem besides gluten or dairy, rather that your gut is still healing.

So, chocolate, sugar, beans, corn--all difficult to digest with a damaged gut--are going to give you trouble.

I just wrote all this on two other posts today. I always feel bad when someone is frantically searching for the offending foods on elimination diets when sometimes, it is just slow gut-healing.

To get a reliable test result however, you need to be CONSUMING gluten for at least 4 weeks, I believe.

As for eliminating soy, well, that is as tricky as gluten. Soy and its derivatives (soybean oil, soy lecithin, etc) are in everything from mayonnaise to potato chips. There are lists --just google 'soy allergy lists of foods to avoid" ....but in my humble opinion, I'd be tested first.

Just my two cents. :)

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Not long ago I did ask my dr for blood tests for a number of things about a month and half after I took gluten/grains out of my diet but all tests came back as normal including the one for celiac. I have never had a biopsy though for anything. 8 or so years ago I went to my drs complaining of fatigue, feeling ill, stomach pain, acid reflux, diarrhoea, headaches etc. They also did blood tests then as well (although not for celiac that time) and they all came back normal except for an elevated white cell count which they said was 'probably' viral...or in their words a 'possible viral infection'.

6 Months later I still have the symptoms so I go back. They wouldn't repeat the tests, saw that I had suffered from depression in the past and diagnosed it as depression and anxiety with IBS. No testing was ever done other than that first set of blood tests at that time.

Medication (anti depressants) have not helped.

Therapy is useless and has no effect.

Fast forward 8 years and its getting worse. The fatigue and dizziness were so bad I could not get out of bed most days as every time I did the room would feel like it was moving. The diarrhoea was worse and the stomach pain and so on. So eventually I had to try something and as I had noticed that my symptoms changed whenever I had made any dietary changes in the past (either gotten worse, or slightly better until my diet changed back again) I decided to look into food issues.

First I pulled grains and within a month I was able to sit up again and get out of bed but I was still not feeling right. Then I pulled dairy and there was really no significant change...

Now I'm wondering why I my dizziness and diarrhoea are getting worse again (although I am still well enough to stay out of bed) and the only link I can spot is that I have been consuming more soy products than before.

I may try to find a dietician as I am sure I am intolerant to something but I am not 100% sure what.

My other theory is that it is Chronic fatigue as the improvements I saw with dietary changes in the past may have been coincidental. It seems to have a semi remitting (where I see slight improvement) relapsing course at times and if it's not food related I've no idea why. My full set of symptoms include:

Repeated infections in my teeth and molars that seem to be disintegrating/breaking apart.

Sore throat that comes and goes

Pain in my neck especially after eating bread/grains

Generalised itching

Bloating

Gut pain (upper and lower)

Acid reflux

On going diarrohea or rather soft pale stools that smell rancid (the rancid smell has improved since taking grains out).

Body temperature issues...either feeling too cold or like I am burning up

Muscle pains

Muscle twitching

Vertigo

Fatigue

Blurry vision (that changes too frequently to be a need for a new prescription

Headaches (migraine type)

And a burning/tingling sensation in one patch of my skin on my arm after I eat certain foods.

Irritability cause I always feel bad.

Past symptoms that vanished and have not returned yet:

Eye sight completely cutting out for a split second, momentarily blinding me.

Loss of ability to feel heat in my legs (burnt my leg in bath several times)

Peripheral neuropathy in my hands

Feeling as though the cold tap was hot when I put my hand under it (only lasted briefly).

Burning sensation in the skin around my ear canal.

Lately the skin in the side of my face keeps going semi numb but not the muscle underneath (as I can move everything ok).

Only it confuses me as I get times where for one reason or another it seems to pretty much disappear (except for a few minor symptoms) then comes back again, lasts for months, then goes then comes back again then comes then goes then comes then goes...gah.

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Kiddo,

Given your symptoms and the fact that your brother has celiac disease

AND the fact that you were blood tested while OFF gluten (so, of course it will be negative!)I think you need to find a doctor to test you appropriately--while ON gluten.

You have many of the symptoms I had--and honestly, you really need a good celiac-savvy GI doc to look at your SYMPTOMS and your family history.

The neurological symptoms, especially, are worrisome. I suspect you have vitamin and mineral deficiencies. You may need blood work and follow-up care.

If you do not really care about a firm diagnosis and do not wish to resume gluten, then it is your choice to stay off it--- and stay off dairy, too-- so your small intestine can heal. Stop worrying about various foods, stick to plain food (no sugary chocolate mousses, etc--they are too hard to digest right now) and see if you don't start to feel better.

I wish you well!

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Going soy-free is not a bad idea. You will end up eating mostly whole foods by doing that, as most processed foods have soy in them. There are also nightshades to consider, (potatoes, tomatoes, peppers) and other food groups as well. Your nerve issues could be caused by mal-absorption.

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I would definitely try going off soy. I never have believed it was the super health food like so many others did. Especially with it being genetically modified and round-uped within an inch of its life I think it's best to stay away. :)

Yeah, soy and corn are hard to stay away from in combination with gluten....but after a little bit it will become second nature! There are chips (natural Kettle brand) that are soy free, you can find soy free chocolate, and I just make my own mayonnaise.

Good luck!

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I just make my own mayonnaise.

Do you have a recipe/instructions for this?

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