Soy Intolerance

[SoyBoy]

Hello,

I have a confession to make before I start posting here...I am not actually celiac, I am soy intolerant. I hope you don't mind me jumping into your forum, but there is no other place for me to go. I have had a look at this forum, and I've found so many similartities between celiac and what I have experienced. Here is the abbreviated version of my history...

* Cramping and D since teenage years (now 34 years old)- at least 1-2 times a week

* Dermatitis since teenage years

* Last year hit "rock bottom" with the following - borderline low B12, dizziness, poor glucose control, couldn't walk upstairs (or anything physical) without extreme exhaustion, heart palpitations, MRI showed brain lesion (left unexplained), glossitis (dermatologist said low B1, B2 or B3), neuropathy, rapid weight loss.

* Symptoms (except cramping, D, and dermatitis) much improved with 3 months of 1000 mcg sublingual B12, daily multivitamin, B complex, and electrolyte drink

* Cramping, D, and dermatitis much improved with elimination of soy from diet (still struggling with this though).

Am I off in thinking that this sounds similar to the symptoms of celiac?

I was also wondering if anyone else might have good information on 1) Supplementation - In your experience, what vitamins / minerals work best. I'm not looking for brand, I'm more interested in types (multivitamin, injectables from doctor, etc.) Quantities / frequency as well would be appreciated. 2) Any good resources for managing soy intolerance - I understand that many with celiac are soy intolerant as well.

Thank you and take care,

SoyBoy - Paul

[srall]

My girlfriend is soy intolerant and we have compared symptoms and she does indeed have the same reactions as I do to gluten.

Have you actually done an elimination diet to see if you feel better off gluten? (I'm not disputing the soy intolerance at all...I am intolerant to soy and my friend who is intolerant to soy has my gluten intolerance symptoms). I'm just asking because my brother has a host of health problems that I know are related to gluten, but he's tested negative for celiacs so he takes that to mean that he can and should eat gluten, which I think is crazy.

Either way, I believe you can definitely find support and advice on this board.

[SoyBoy]

Thank you for the reply. I haven't tried gluten-free because the elimination of soy made me feel so much better. Although, after reading your post, I think it might be worth trying.

Thanks again!

[srall]

I just think that your symptoms sound so much like gluten intolerance, it just might be worth a try. Just to make sure.

But I do believe it may be just the soy. I've seen it with my friend.

[mushroom]

I found out about my soy intolerance once I eliminated the gluten. You may well find you, too, are intolerant to both (many of us are).

[GFinDC]

I have celiac myself and also soy intolerance, among others. They can cuase similar symptoms. The thing to be aware of though is symptoms among different people can also vary widely. They say there are 200 symptoms of celiac disease, although I have no idea where that number comes from. There certainly are quite a few different symptoms people on this board get from gluten. We are a variety-pack!

[kayo]

I found out about my soy intolerance once I eliminated the gluten. You may well find you, too, are intolerant to both (many of us are).

That's my experience as well. It's difficult for me to tell sometimes if I've been glutened or soy'd but then I look at my ankles (cankles) and say yup, soy'd. I puff right up and dry out (dry eyes, mouth, etc.).

[bigbird16]

Hi and welcome, Paul.

Soy was the last thing I realized I was intolerant to--gluten first, then dairy, finally soy. By the time I got to soy, adding one more thing to the do-not-eat list was kind of like, "Whatever." I react similarly to soy as to gluten--migraines, fuzzy head, neuro issues. No advice to share on supplements, as I have a bad habit of forgetting to take them. For managing, I haven't looked very hard for online resources. But the biggest piece of advice would be to read labels thoroughly on your food, drinks, medications, anything you put in your mouth. Also, I get Living Without magazine; it caters to multiple food issues. It always makes me super happy to get a recipe from them in my e-mail box and to get the magazine. Having pictures of beautiful food and yummy recipes that I can either make without worry or with minor substitutions (like using coconut milk in place of soy milk) always bring a big dairy/soy-free cheesey smile to my face. The new kitchen creations have been great hits with everyone, too.

Cheers,

K

[NorthernElf]

I'm just learning my way around the soy thing. I've been gluten-free for about 7 years and had been doing well except for the last few months. I use Natura soy milk with my Mesa Sunrise cereal and Bragg's aminos occassionally. My usual breakfast is rice based - so soy for me is sporadic anyway (plus I know it's in a lot of processed stuff...don't eat much of that either). Went camping for a week and ate soymilk & cereal every morning & had lots of digestive issues. Halfway through the week pinned it on the soy.

Fast forward a couple of weeks & made a fried rice with Braggs and had some cramping. Brilliant person that I am, I searched gluten free almond milk and had cereal with Almond Breeze for a bedtime snack after hockey and had stomach cramps that night and for the next day...and felt terrible. Ugh. It may be gluten-free but it's not soy free.

Ok....."uncle"....soy is now off my list. What the heck. Having my morning coffe right now and my stomach is still a bit off. I had a very bad reaction, worst ever, to that Almond Breeze...I'd say worse than gluten almost...?

How does one know the difference between intolerance and true allergy ?!?!?!?!?!

[SprinklesandAllergies]

I have been gluten free for 2.5 years after searching for a diagnosis to chronic health and nervous system issues for 20 years. After about 2 years of being on the diet and healing, I developed a severe allergy to soy, and I am talking severe. I am 24 years old and was feeling like I couldn't eat anything without having some sort of anxiety. I've since healed and gotten my allergy in check and am doing better than ever! You are so right that there are not a lot of resources for soy intolerance or allergies and it is in everything! More so than gluten I feel. I have dedicated my life to helping others cope with food allergy, intolerance, and celiac. I have also read somewhere that about 15% of people with celiac also develop a problem with soy at some point. Wishing you the best of luck and health.