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When Does It Ever End?

Sarah8793

By Sarah8793
in Coping with Celiac Disease

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Sarah8793 Enthusiast
Sarah8793
Posted

Okay, it seems that soy milk has now decided to rip my stomach up and make me bloat. :angry: I am alreday gluten and casein free. I can tolerate soy in small amounts in processed foods, just not the milk. So now I am drinking almond milk. Will it be almonds next?? I have this fear that when I am an elderly person, I will only be eating rice and water. I'm not into the rotation diet thing. I already have enough trouble planning meals for my family with two picky children. I just don't understand this. It's like my immune system is saying, "I'm ready, what's next?"

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hathor Contributor
hathor
Posted

I know exactly how you feel, if that helps.

Soy seems to be a common third problem. So I don't think you can conclude from your experience that you will keep on adding new intolerances.

Probably you have always been intolerant to soy but your other intolerances covered up your symptoms. Now that you are healing from being gluten and casein free, your body is telling you it doesn't want the third common gluey protein, from soy.

I advise you to completely eliminate soy. Even if you think you can tolerate soy in small amounts, damage can be done. Sometimes the symptoms are rather subtle.

I tested as intolerant to soy with Enterolabs. This was a complete surprise to me. But I figured I would cut out soy and see what happened. Well, my skin noticeably improved. Now if I have a tiny bit of soy, I will feel out of sorts and my face breaks out. And the bloating too ...

You could always go completely soy free for a while and then test your reaction to tiny amounts. That's what I did. I had read that some folks can tolerate soybean oil so I ate at a restaurant that uses only that oil. I got sick.

Enterolab had told me that soy lecithin would probably be OK. But now I've read folks here who react to it. So I am doing a trial of not consuming that.

Mom23boys Contributor
Mom23boys
Posted
I am alreday gluten and casein free. I can tolerate soy in small amounts in processed foods, just not the milk.

It is VERY common for people with milk issues to have soy issues also. Somehow milk, wheat and soy have similar problem causing properties. Hopefully this is the end of it now.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author

Thank you Hathor and Mom23boys,

I feel better hearing from others that this isn't necessarily going to continue with other foods. Hathor, I think you are probably right about having always been sensitive to soy. My enterolab results for soy was an 8 (<10 being normal). That was before I started replacing milk with soy milk. Probably after I started ingesting higher quantities, my soy number went up. I will try to remove it completely, but that will be difficult when I try to eat the same as my family members. My children are both guten and casein free also. Back to the drawing board for yummy recipes without soy. :)

kabowman Explorer
kabowman
Posted

Even if you do have additional intolerances down the road (I do but very minor ones), you feel so much better that it is easy to adjust. However, I have only had small issues since I figured all the big stuff before. Now it is little stuff like the calcium suppliment in non-dairy milks (now I use Hemp) and tea. I am so happy to figure out when I have a problem and know I am not going to be sick. Not that I have been that sick for quite a while but it is nice to be off the imodium most of the time.

dinali63 Rookie
dinali63
Posted

I am newly diagnosed with celiac and thought that I would feel SOOO much better without gluten in my diet. I did, and then started to have the same bloating and stomach pains. I then cut out dairy. Felt a bit better, but still had stomach pains. So, now, after posting on this site a couple of days ago, with the help of others that posted, it was suggested that it may be the soy in my diet. I do not drink soy milk, but items contained soy flour and soy lecithin I have been reacting to. I cut it out yesterday and the pain was definitely less today.

So there are others experiencing what you are! Sometimes it's overwhelming, but I keep thinking that soon I will feel fantastic! It keeps me going when I feel depressed about the foods I miss.......

Glutenfreefamily Enthusiast
Glutenfreefamily
Posted

I felt that way too. Gluten free made me feel great at first then dairy, soy, egg, yeast, and then salt and then sugar came along. I dont think it was due to celiac necessarily it was just that I wasn't absorbing my foods before so they were passing by without symptoms.

I know it stinks because with prepared foods what doesnt have gluten has dairy and what doesnt have dairy has soy. I find it just takes alot more work for me and preparation. I still cook a variety of foods for my family but I only partake in a couple of things on the menu. I also freeze alot of foods so I can defrost and heat up as I want them.

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oceangirl Collaborator
oceangirl
Posted

I am going through a frustrating period where I've added some things back after a year and a half gluten-free and now am symptomatic again. (9 days in) I had added egg back about 2 weeks ago (not a lot, but still...) I've been gluten, soy, dairy, egg, legume and nightshade- free for most of this time - a year and a half. Looking at my food log it looks like the egg is very suspicious, also peanut oil or cottonseed oil. I feel so discouraged and understand your frustration. Sometimes it sure seems like I will end up intolerant to everything! BUT!!! I have had MOSTLY good days in the past year and am trying to hold on to the notion that I'll figure it out again this time and feel better again.

This is not much help except to tell you you are not alone and to keep plugging on being a good detective! I hope you find your culprit and feel much better soon!

lisa

VioletBlue Contributor
VioletBlue
Posted

Rice AND water? I think you're being overly optomistic there :lol:

I don't know when it ends. I don't appear to have found that magic place either. I have no words of wisdom. But I understand your frustrations.

Violet

FootballFanatic Contributor
FootballFanatic
Posted

About soy:

Does soy show up on ingredient lists under any other names. You know how hard it is to memorize everything that "gluten" entails....

If you are eliminating soy, do you have to look for anything besides "soy"?

I eliminated the soy milk but haven't been looking at other foods for soy.... Haven't had the energy...

buffettbride Enthusiast
buffettbride
Posted
About soy:

Does soy show up on ingredient lists under any other names. You know how hard it is to memorize everything that "gluten" entails....

If you are eliminating soy, do you have to look for anything besides "soy"?

I eliminated the soy milk but haven't been looking at other foods for soy.... Haven't had the energy...

Soy is one of the top 8 allergens so its presence will be on the label. I am not an expert however, and knowing the folks around here, there is probably "hidden soy" somewhere. B)

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Rice AND water? I think you're being overly optomistic there :lol:

:D:D Your are right, I should have only said water! :D:D Thanks for the laugh, I needed it.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
About soy:

Does soy show up on ingredient lists under any other names. You know how hard it is to memorize everything that "gluten" entails....

If you are eliminating soy, do you have to look for anything besides "soy"?

I eliminated the soy milk but haven't been looking at other foods for soy.... Haven't had the energy...

As far as I know, soy is usually listed as soy but in different formats: soy lecithin, soybean oil, soy flour, soy milk etc. etc. I don't know of any different names for soy, but others here may.

hathor Contributor
hathor
Posted

Before the labelling law went into effect, you could have hidden soy in foods, as in: flavorings, hydrolyzed protein, vegetable broth, vegetable starch, etc. However, with the new law, the presence of soy in food has to be identified.

Soy is all over. You have to read labels.

When you are in a restaurant, avoid soy sauce, miso, edamame, tempeh, tofu and texturized vegetable protein. Check what things have been fried in (often they seem to go with what is cheapest).

However, you have to check out supplements and medicines. Soy does not have to be disclosed and it does find its way in there. I've seen it as a source of vitamin E, an ingredient in the "vegetable glaze" on the outside, etc. A supplement I was taking had been labelled free of soy and still says that on the company's web site. But now the label says the glaze contains "soy lecithin." I don't think they changed the product, just how they decided to label it. (I dropped the supplement and I'm doing better. Grrr ... If they had said nothing about soy, I would have called. I did that with another one of their products and had been told there was soy lecithin in the glaze.)

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
However, you have to check out supplements and medicines. Soy does not have to be disclosed and it does find its way in there. I've seen it as a source of vitamin E, an ingredient in the "vegetable glaze" on the outside, etc. A supplement I was taking had been labelled free of soy and still says that on the company's web site. But now the label says the glaze contains "soy lecithin." I don't think they changed the product, just how they decided to label it. (I dropped the supplement and I'm doing better. Grrr ... If they had said nothing about soy, I would have called. I did that with another one of their products and had been told there was soy lecithin in the glaze.)

Maybe this is why I have always had trouble with supplements. I have always been confused as to why I can't take vitamins, because they say they are dairy and gluten free. But sure enough, any time I take a supplement I feel sick. Do you know of any lines that truly are soy, dairy and gluten free?

hathor Contributor
hathor
Posted
Maybe this is why I have always had trouble with supplements. I have always been confused as to why I can't take vitamins, because they say they are dairy and gluten free. But sure enough, any time I take a supplement I feel sick. Do you know of any lines that truly are soy, dairy and gluten free?

People have mentioned supplements before, but I didn't make note of it because I thought I had it covered :angry: Of course, they might be relying on companies saying "soy free" when it really isn't, too. I guess they think because most allergic individuals (supposedly -- I don't know if anyone has actually studied it) don't react to soy lecithin, it isn't really soy. Or something.

You might ask this question in a new thread or try searching the board. Googling might help. I do remember someone recently saying that GNC does a good job of labeling their things for allergens, but I don't know this for a fact myself.

Sugarmag Newbie
Sugarmag
Posted

You might ask this question in a new thread or try searching the board. Googling might help. I do remember someone recently saying that GNC does a good job of labeling their things for allergens, but I don't know this for a fact myself.

I've had really good luck with GNC. They have been stating all the information right on the bottle. I had a really hard time finding a fish oil without soy. But the deodorized GNC fish oil is safe.

It says:

Other Ingredients: Fish Body Oil, Gelatin, Glycerin

No Sugar, No Starch, No Artificial Color, No Artificial Flavors, No Preservatives, Sodium Free, No Wheat, No Gluten, No Corn, No Soy, No Dairy, Yeast Free

Storage Instructions: Store in a cool dry place.

I also use quite a few of their other supplements, and they all have the same statement on them. I haven't had any intestinal problems, or skin reactions with them. (Even a tiny bit of soy makes me break out in a rash.) (I have to take the women's prenatal, even though I'm not pregnant, just because it's also soy free!)

ps....I started off Gluten free, then it was soy free, and now I'm dairy free too! I starting thinking I'd react to everything also (corn, rice, etc). But so far, I'm fine now that those three are out!

hathor Contributor
hathor
Posted

I'm glad to hear there is a store that doesn't hide the ball!

I'll have to take a look at the prenatal vitamins, although that would probably throw my husband for a loop :lol:

Glutenfreefamily Enthusiast
Glutenfreefamily
Posted
Maybe this is why I have always had trouble with supplements. I have always been confused as to why I can't take vitamins, because they say they are dairy and gluten free. But sure enough, any time I take a supplement I feel sick. Do you know of any lines that truly are soy, dairy and gluten free?

Just had a thought, I know big surprise :lol: , could it be msg? I react to it horribly bad. Its worse than gluten for me since the room literally spins on me with vertigo. That is a tough ingredient though! Its hidden under so many names.

Even gelatin can be msg <_<

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I've had really good luck with GNC. They have been stating all the information right on the bottle. I had a really hard time finding a fish oil without soy. But the deodorized GNC fish oil is safe.

It says:

Other Ingredients: Fish Body Oil, Gelatin, Glycerin

No Sugar, No Starch, No Artificial Color, No Artificial Flavors, No Preservatives, Sodium Free, No Wheat, No Gluten, No Corn, No Soy, No Dairy, Yeast Free

Storage Instructions: Store in a cool dry place.

Thanks for posting this! I will definately be checking into these. :)

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