Soy Allergy?

[ShannonA]

well today is day 5 gluten free, I had to start over bc of CC. Anyway I woke up this morning congested, head pain with my head feeling swollen like I had ingested gluten. I know that I didn't bc I have been extremely cautious. Then I remembered soy, i ate something with soy milk. Most likely that's it but as I read labels now, everything that is gluten free contains soy, or so it seems. How do you eat wheat free and soy free? I feel so overwhelmed. It's like I take 2steps forward then 1 step back. I was also tested by a naturopath and showed no wheat or soy allergy but I did show leaky gut and feel so much better off of wheat. Can someone please explain this to me? Thank you so much!

[rosetapper23]

Many of us with celiac can't eat soy--I feel almost the same after eating soy as I do gluten. There are actually a lot of gluten-free products out there that don't use soy. Most breads don't contain it, and I'm careful to read the labels on waffles, cookies, etc. Be careful of soy in canned tuna, mayonnaise, and salad dressings. The tuna at Trader Joe's and Whole Foods doesn't contain soy, and there are canola, coconut, and other mayos out there that contain little or no soy.

I know it seems overwhelming at first...as though there's very little to eat. Generally, when we start a gluten-free diet, it's recommended that we eat only natural foods and cook from scratch. Because there are so many suspect ingredients in processed foods, it really is easier and safer to stick with natural ones for at least a few months.

Believe me--things will get better! And, as you begin to FEEL better, it will seem easier.

[Hornet]

Well this is a club I too am in! Who would know there was soy in so many gluten-free products. I get pain and an itchy face. Do you ever get itchy reaction?

I am not yet diagnosed with anything, but have extreme GI issues and these pop up out of know where allergic reactions to foods and medications. One day I am fine with yogurt, next day my face it itchy! Today a systemic response was set off with whatever I ingest.ER in next for epinephrine.

I can't wait until this body settles down. Good luck to both if you.

[ShannonA]

  On 7/7/2012 at 6:01 PM, rosetapper23 said:

Many of us with celiac can't eat soy--I feel almost the same after eating soy as I do gluten. There are actually a lot of gluten-free products out there that don't use soy. Most breads don't contain it, and I'm careful to read the labels on waffles, cookies, etc. Be careful of soy in canned tuna, mayonnaise, and salad dressings. The tuna at Trader Joe's and Whole Foods doesn't contain soy, and there are canola, coconut, and other mayos out there that contain little or no soy.

I know it seems overwhelming at first...as though there's very little to eat. Generally, when we start a gluten-free diet, it's recommended that we eat only natural foods and cook from scratch. Because there are so many suspect ingredients in processed foods, it really is easier and safer to stick with natural ones for at least a few months.

Believe me--things will get better! And, as you begin to FEEL better, it will seem easier.

Yes I am going to have to stick to only natural foods for a while, it's easier said than done. I just really never considered being sensitive to soy, so glad for my food log! Why wouldn't it show on the allergy test?

[ShannonA]

  On 7/7/2012 at 9:13 PM, Hornet said:

Well this is a club I too am in! Who would know there was soy in so many gluten-free products. I get pain and an itchy face. Do you ever get itchy reaction?

I am not yet diagnosed with anything, but have extreme GI issues and these pop up out of know where allergic reactions to foods and medications. One day I am fine with yogurt, next day my face it itchy! Today a systemic response was set off with whatever I ingest.ER in next for epinephrine.

I can't wait until this body settles

down. Good luck to both if you.

The pain is in the form of migraines & inflammation. I have gotten itchy blisters on my fingers for almost 18 years now, never knowing the cause. I read recently on this site to change my hand soap to SLS free soap, along with gluten free diet. I did and the blisters went away. Also in the past I would not always have a reaction to foods and that's what kept me guessing what was going on. But now I'm going gluten & soy & milk free!

[IrishHeart]

First of all, it is only day 5 off gluten and you are still getting the gluten out of your system. So, you could be feeling pretty wonky from that still. It takes a LONG time to heal a bad gut, hon.

Most of us feel like we go a few steps forward and then one back at the beginning. It takes some people YEARS to heal their guts.

And just to be clear, a soy ALLERGY is different from a soy INTOLERANCE, okay?

These are two different mechanisms.

Your digestion is still pretty messed up and every food may seem like a problem.

ROSETAPPER's suggestion to eat PLAIN, whole foods is the best advice. I agree totally.

You mention your Naturopath tested you for a leaky gut. What testing did she use? Just curious.

[ShannonA]

  On 7/7/2012 at 10:25 PM, IrishHeart said:

First of all, it is only day 5 off gluten and you are still getting the gluten out of your system. So, you could be feeling pretty wonky from that still. It takes a LONG time to heal a bad gut, hon.

Most of us feel like we go a few steps forward and then one back at the beginning. It takes some people YEARS to heal their guts.

And just to be clear, a soy ALLERGY is different from a soy INTOLERANCE, okay?

These are two different mechanisms.

Your digestion is still pretty messed up and every food may seem like a problem.

ROSETAPPER's suggestion to eat PLAIN, whole foods is the best advice. I agree totally.

You mention your Naturopath tested you for a leaky gut. What testing did she use? Just curious.

He did blood and urine & I was only able to have 24 oz of water 24 hours prior to the specimen collection. It was a comprehensive metBolic profile & the company name on my results is Design for Health.

So how would I be tested for an intolerance?

[Chad Sines]

My soy intolerance hits me faster than gluten. I can feel off and if I have too much projectile hurling king of the world!!

I did not have this pre-Celiac, so along with dairy maybe one day this will clear up and I can eat the nasty soy that I did not like to begin with.

[IrishHeart]

  On 7/7/2012 at 10:37 PM, ShannonA said:

He did blood and urine & I was only able to have 24 oz of water 24 hours prior to the specimen collection. It was a comprehensive metBolic profile & the company name on my results is Design for Health.

So how would I be tested for an intolerance?

Celiac is diagnosed by a celiac panel.

There is no scientific, proven test for gluten sensitivity YET.

Blood and urine testing that showed what exactly? What did he tell you you have exactly?

I looked at Design for Health and cannot seem to get any info on what this testing is FOR?? You cannot access the website.

A CMP--a comprehensive metabolic profile can be done by a medical doctor.

What did the profile results uncover?

Can you post them here?

[kareng]

Maybe the head congestion has nothing to do with a food? My sons have been working outside, in the country. Here, corn pollen is " in season". He wasn't taking allergy med and woke up congested with a headache.

Five days gluten-free is too soon to try to figure out what else, if anything, may be bothering you. Eat simply and don't buy a bunch of gluten-free processed stuff for a few months. Gluten

may not even be your problem.

Another thought is to go back on gluten and get a Celiac blood panel from a doctor.

Intolerances are only diagnosed by trial and error. But first, why don't you see a doctor?

Read on here and you will learn a little about how an intolerance is different than an allergy and they are both different than Celiac.

[ShannonA]

  On 7/7/2012 at 11:33 PM, kareng said:

Maybe the head congestion has nothing to do with a food? My sons have been working outside, in the country. Here, corn pollen is " in season". He wasn't taking allergy med and woke up congested with a headache.

Five days gluten-free is too soon to try to figure out what else, if anything, may be bothering you. Eat simply and don't buy a bunch of gluten-free processed stuff for a few months. Gluten

may not even be your problem.

Another thought is to go back on gluten and get a Celiac blood panel from a doctor.

Intolerances are only diagnosed by trial and error. But first, why don't you see a doctor?

Read on here and you will learn a little about how an intolerance is different than an allergy and they are both different than Celiac.

I am done with doctors as I have seen 4 neurologists, a neurosurgeon, 2 therapists, endocrinologist,ENT,2 pain mgmt doctors, GYN, allergist, dermatologist, gastroenterologist, acupuncturist . Also many different alternative therapies and all I seem to hear is try reducing the stress in my life. I could barely get out of bed & cook breakfast for my children, this was not stress but nobody knew what to do. So I realized that in January our church had 21 days of prayer and fasting in which I only ate fruits and veggies. The next month was wonderful! So last month I remembered, that's how foggy my mind was that I didn't even put 2 & 2 together, that and got off of wheAt and had 8 days of relief. Over the last two years I always have felt if I didn't have to eat I would be better. Plus I have a nutritionist that is helping me tremendously. All of the supplements are bringing me back to life although I still have to rest often. But I can tend to my children again, thank God! I am not going to spend any more money at this time & try elimination. There is just so much to learn! I am so grateful that I found this site!

[rosetapper23]

Yes, I was done with doctors, too, when everyone missed an obvious diagnosis. I still don't trust them (except my oncologist) and would much rather deal with chiropractors and integrative medicine doctors. And dermatologist? Don't get me started!

I think you're on the road to recovery--just eat clean, and I think you'll be fine.

[ShannonA]

  On 7/7/2012 at 11:09 PM, IrishHeart said:

Celiac is diagnosed by a celiac panel.

There is no scientific, proven test for gluten sensitivity YET.

Blood and urine testing that showed what exactly? What did he tell you you have exactly?

I looked at Design for Health and cannot seem to get any info on what this testing is FOR?? You cannot access the website.

A CMP--a comprehensive metabolic profile can be done by a medical doctor.

What did the profile results uncover?

Can you post them here?

It showed my biochemistry makeup, what was functioning properly or not, electrolytes, nutritional elements, toxic elements, food antibody reactions, cellular energy ( not metabolizing fats), not detoxifying, adrenals & thyroid not functioning properly, dehydration, malabsorption, anemia, enzymes not breaking down food. He recommended to get off of wheat but I didn't at that time. I really thought I was dying & thought it couldn't possibly be bc of wheat. he didn't know for sure but said daily migraines for 2 years was probably from liver not detoxifying like it should be doing. My glutithione was depleted. He put me on 9 supplements & physically I am gaining

strength. He has helped me come back from the dead! Wonderful man!

[IrishHeart]

I had a similar path....your list of "medical pros" sounds like mine.Dozens of doctors...no help.

However, I am often leery of testing that is questionable, having gone that route myself.

But, if you are feeling better and it works for you, then, keep at it. I was only trying to help you with follow up care.

best wishes to you.

[ShannonA]

  On 7/8/2012 at 12:47 AM, IrishHeart said:

I had a similar path....your list of "medical pros" sounds like mine.Dozens of doctors...no help.

However, I am often leery of testing that is questionable, having gone that route myself.

But, if you are feeling better and it works for you, then, keep at it. I was only trying to help you with follow up care.

best wishes to you.

Thank you!

[ShannonA]

What did you do for follow up care?

[IrishHeart]

  On 7/8/2012 at 11:45 AM, ShannonA said:

What did you do for follow up care?

Because I had been long unDXed, and I was in poor health and in constant pain, my new GI doctor runs blood work every few months to check my thyroid (which once had a lump on it and ran from hyper to hypo and back again), glucose levels, iron, vit D, folate, and B-12 levels (all of which were tanked ), a CMP and CBC. Also, tests for inflammation in the body, such as Sed rate, ANA and C-reactive protein. There are a few more, but those are the important ones.

He had me do a small bowel follow- through series to rule out other GI diseases and lymphoma, various stool tests for parasites, infections, etc., the test for h. pylori, that sort of thing.

Soon, he will biopsy me to make sure I am healing. I am okay with that.

As much anger as I hold for the medical community for not diagnosing me properly and letting me go down the tubes for so many years, I have come to trust this doctor who understands celiac and who has taken it upon himself to watch over me.

[ShannonA]

  On 7/8/2012 at 1:04 PM, IrishHeart said:

Because I had been long unDXed, and I was in poor health and in constant pain, my new GI doctor runs blood work every few months to check my thyroid (which once had a lump on it and ran from hyper to hypo and back again), glucose levels, iron, vit D, folate, and B-12 levels (all of which were tanked ), a CMP and CBC. Also, tests for inflammation in the body, such as Sed rate, ANA and C-reactive protein. There are a few more, but those are the important ones.

He had me do a small bowel follow- through series to rule out other GI diseases and lymphoma, various stool tests for parasites, infections, etc., the test for h. pylori, that sort of thing.

Soon, he will biopsy me to make sure I am healing. I am okay with that.

As much anger as I hold for the medical community for not diagnosing me properly and letting me go down the tubes for so many years, I have come to trust this doctor who understands celiac and who has taken it upon himself to watch over me.

That is wonderful that you finally have a good doctor. I go back in 4 months to the naturopath & I'll request what you have being done. I had the colonoscopy by the GI doc & infections & parasites were negative.

I wish you the best, take care!

[IrishHeart]

  On 7/8/2012 at 8:56 PM, ShannonA said:

I wish you the best, take care!

And right back at you!

[GFinDC]

Since celiac disease affects the small intestine they do an endoscopy to take several biopsy samples for microscopic review. Colonoscopy won't detect celiac, so your GI missed the boat there.

[IrishHeart]

  On 7/9/2012 at 5:01 PM, GFinDC said:

Since celiac disease affects the small intestine they do an endoscopy to take several biopsy samples for microscopic review. Colonoscopy won't detect celiac, so your GI missed the boat there.

I was just going to say this, but you beat me to it...thanks, Gee EFF!

[eatmeat4good]

Oh Shannon....I'm so happy for you and for your children that you figured this out!!

I too, had 25 Dr.'s, rheumatologists, dermatologists, internists, psychiatrist, physician assistants,and 3 emergency room trips before I found c.com and the answer. Thankfully I have my life back! You will too!

Even though it's too soon to know what all of your secondary intolerances may be, I think you are smart to eliminate the big baddies. I wish I had done so sooner. I would have gotten well sooner. So I think you are on the right path to suspect secondary intolerances. At least you aren't doing any harm by eliminating them.

I wish you well in your recovery. You make me remember what it was like when the revelation hit me.

You mean it was wheat all this time? I shudder to think of how simple the answer was. But it sure ain't simple if you don't know what it is!