Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Avoiding Soy


7-cody

Recommended Posts

7-cody Apprentice

I'm going to try avoiding soy for a while.

Soy is a top 8 allergen, right? So avoiding it in terms of knowing what I can and can't eat should be pretty simple? Or is it like gluten, where I have to memorize 3,961,582 different ingredients?

I tried using the search feature and couldn't find exactly what I was thinking of. I'm so brain fogged right now though that I wouldn't be surprised if I missed it.

thanks in advance.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tom Contributor
Soy is a top 8 allergen, right? So avoiding it in terms of knowing what I can and can't eat should be pretty simple?

thanks in advance.

Hehe you're welcome in advance. :)

Avoiding soy is very easy. It's a Top 8, and I've been seeing "contains soy" everywhere since well before it was mandatory.

I had the most miraculous set of vast improvements since quitting soy.

May you have the same. :)

I've read of ppl who can't have soy, except when it's 'soy lecithin'. I don't know what it is and I don't wanna know.

But it is somewhat common in processed foods.

7-cody Apprentice
Hehe you're welcome in advance. :)

Avoiding soy is very easy. It's a Top 8, and I've been seeing "contains soy" everywhere since well before it was mandatory.

I had the most miraculous set of vast improvements since quitting soy.

May you have the same. :)

I've read of ppl who can't have soy, except when it's 'soy lecithin'. I don't know what it is and I don't wanna know.

But it is somewhat common in processed foods.

hahah, I feel like a robot, "thank you in advance".

I just don't feel good. It's so hard to concentrate right now. I'm supposed to be doing homework, but ehhh... I'll probably end up doing the wrong page or something.

I've been gluten-free for two months and don't feel better. So it sounds like something else is bothering me. I was tested negative for casein. So yeah, hopefully it does help me. Soy causes constipation right? Does it also cause brain fog and other problems?

But yeah... avoiding soy is basically just like avoiding casein then? Just look for the "contains soy" disclaimer?

ravenwoodglass Mentor
hahah, I feel like a robot, "thank you in advance".

I just don't feel good. It's so hard to concentrate right now. I'm supposed to be doing homework, but ehhh... I'll probably end up doing the wrong page or something.

I've been gluten-free for two months and don't feel better. So it sounds like something else is bothering me. I was tested negative for casein. So yeah, hopefully it does help me. Soy causes constipation right? Does it also cause brain fog and other problems?

But yeah... avoiding soy is basically just like avoiding casein then? Just look for the "contains soy" disclaimer?

I actually find avoiding soy much easier than casein. It at least is clear on a label. Don't think that something that is nondairy is safe, I have found out the hard way that is not the case. Casien can hide just like gluten does and if you are also avoiding soy watch out for it in Rice Cheeses and such. Something I have noticed is that if it says Dairy Free, lactose free that does not always mean casien free.

hangininthere Apprentice

Me and my adult son are soy intolerant.

He gets nauseated and I get brain fog and depression and achiness.

We found this out within weeks of going gluten free - my son first noticed it, then when I started leaving out soy along with gluten, I noticed it too.

Me and son are able to have the ingredient soy lecithin, I've read that the allergen in soy is lost in the processing of the soy lecithin.

But watch out when trying soy lecithin, because some people can have it and some not, just as with soybean oil I mention below.

Was so glad to find out we can now have certain chocolate candy bars and powdered instant chocolate mix for chocolate milk, had went a full year without it.

(But watch out for Hershey's chocolate candy, some people have had trouble with it, as it can contain a tiny amount of gluten without listing it on the ingredients, something to do with the Codex 'law' allowing the companies to list a product as gluten-free when it has under a certain small percentage of gluten in it. The labeling laws need a lot more improvement, but are coming along better than before.)

Soybean oil is said to lose the soy allergen in processing, and is said on the list on the link I posted to be safe but adds that some people may be sensitive to it.

But me and son have both been afraid to try it, because it was the soybean oil in the peanut butter he used to like that made him realize soy was now making him sick.

It wasn't the peanuts that made him sick either, because he eats tons of soy-free peanut butter now just fine (Skippy Natural Peanut Butter, made with palm oil instead of soybean oil).

I switched from margarine to butter, since margarine is made with soybean oil.

The link I posted below lists margarine as okay, but it states in the soybean oil part of the list as okay that some individuals may be sensitive to soybean oil.

Soy didn't make my son sick until the gluten suddenly started making him sick, both hit at once.

When I immediately started cooking him gluten-free foods (and then soy-free also), I ate the same as him and found out that was why I had been so extra sick for the previous nine years.

My son did test the soy lecithin in chocolate candy first and did fine on it, so I then tried soy lecithin and I can have it.

Although some soy-intolerant people can have soybean oil, I'd eliminate it during your soy-free trial, just in case it effects you like it does my son. The same with soy lecithin, eliminate it during your soy-free trial, just in case.

Here's a link to a list of label ingredients that mean 'soy' - and I put part of the list here below.

Open Original Shared Link

Such as 'textured vegetable protein' can mean soy, and 'flavoring' and 'vegetable starch'.

The list says yogurts are okay if they don't have soy based ingredients in them, but the flavored yogurts I have seen list 'flavoring' on the label so I've been too chicken to try them - I just buy plain yogurt and add my own flavorings.

And not on the list below, I have included 'magnesium stearate' that is a common filler in vitamin pills and most all pills and the like, can be soy-derived.

Some whole turkeys or cuts of turkey have soy added - I get the Honeysuckle White Whole Turkey that is soy-free - I e-mailed the company to check, and me and son had no problem with the Honeysuckle White.

We can't have hot dogs, they give me a reaction and I haven't had any in the house so my son hasn't tried them - they don't all say 'soy' on the labels either (even though by law they're supposed to), just a term meaning soy in the ingredient list on label, as the list of terms below in the 'may contain soy' warns us of.

How to read a label for a soy-free diet:

* hydrolyzed soy protein

* miso

* shoyo sauce

* soy flour

* soy grits

* soy nuts

* soy milk

* soy sprouts

* soy protein concentrate

* soy protein isolate

* soy sauce

* tempeh

* textured vegetable protein (TVP)

* tofu

Other possible sources of soy or soy products:

* flavorings

* hydrolyzed plant protein

* hydrolyzed vegetable protein

* natural flavoring

* vegetable broth

* vegetable gum

* vegetable starch

To avoid soy and soy products:

* Contact the manufacture to identify the natural flavorings in foods. Ask if they use soy as a carrier protein for the natural flavoring.

* Flavorings may be soy based.

* Hydrolyzed plant and hydrolyzed vegetable protein in the US are likely to be soy.

* Contact the company to identify vegetable broth, gums, and starches, as they have the potential to be soy.

jnclelland Contributor

Am I the ONLY one who reacts to soy lecithin??? It give me an itchy rash on my hands every time I try it. :angry:

Jeanne

melmak5 Contributor

For anyone who has already done it, how long after cutting out soy did you notice a difference physically/mentally?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



hangininthere Apprentice

As with gluten, when me and son eliminated soy we had an immediate improvement by the next day.

But many people take way longer to notice improvement, whether off of gluten or soy.

I'm going to edit my other post above to say to watch out when trying soy lecithin, because as with soybean oil, some can have it and some can't.

Best wishes to all.

7-cody Apprentice

wow, thanks for all the information hangininthere!

I just realized, though, that I don't think I've been eating any soy anyways. I've been eating eggs, hash browns, santa barbara salsa, corn tortilla chips, steaks, chickens, salad mixes, lots of veggies and fruits... gluten free cookies, gluten free waffles. Thats been my diet for like two weeks. I'm trying to play it extra safe until I feel better, then I'll add more variety and quit eating so much of the same thing.

melmak5 Contributor

I found some soy in the gluten free/dairy free cookies I was chowing on, just be careful.

Maybe you have an issue with eggs?

JNBunnie1 Community Regular
wow, thanks for all the information hangininthere!

I just realized, though, that I don't think I've been eating any soy anyways. I've been eating eggs, hash browns, santa barbara salsa, corn tortilla chips, steaks, chickens, salad mixes, lots of veggies and fruits... gluten free cookies, gluten free waffles. Thats been my diet for like two weeks. I'm trying to play it extra safe until I feel better, then I'll add more variety and quit eating so much of the same thing.

Cody- The waffles likely have soy in them, and maybe the cookies and check the oil on the corn chips. I know Van's gluten-free waffles have soy in them. Also check any salad dressing, most conventional dressing has soybean oil.

7-cody Apprentice

yeah, dang, you guys got me. I checked all my food when I got home and they're in my cookies, waffles... and uhh, forgot what else=p

can eggs cause brain fog and constipation? and I doubt its eggs, because I've gone loong periods of times without eggs before.

Should I order enterolab tests or just try going without? I'm kind of on a tight budget atm...

hangininthere Apprentice

If I eat eggs more than two days in a row, they put me into a deep depression. So I space my egg meals out.

I found this out when I was on a diet and was having boiled eggs in my tossed salads days in a row.

And if my son has eggs too many days in a row, they give him a temper.

It's called something like 'behavioral food allergy' when you have a neurological reaction to any food, it could be different things with different people. For me it is eggs (along with gluten and soy).

The eggs in my baked goods don't bother me or my son, it's just when we eat a lot of eggs every day for more than two days in a row.

So keep experimenting til you find out what agrees with you and what doesn't. Keep up the good work.

Best wishes.

darlindeb25 Collaborator

Also Cody--if you have only been gluten free for 2 months, your body is still ridding itself of toxins from the gluten. It takes time to recover from years of gluten, it never happens overnight.

My soy or corn reactions now cause a nasty rash. I never get much, if I get any, so it's usually just a nasty rash, if I get too much, then I also get constipapted, this week, I got just a little too much and ended up with both and had to really think about what I had eaten. My diet is so controlled now, it's hard for anything to get pass me. This time it was something I had eaten at my celiac support meeting. For some reason, I get it in my head that I am totally safe there and can put anything into my mouth, yet I forget that now all celiacs are soy and corn free!!! :huh: I had a very nasty, fire red rash yesterday morning and the pains of mild constipation---one day I may learn--this is where the brain fog enters--right???

It is true that some people that can't have soy can tolerate soy oils, yet, sometimes, even that changes. I could tolerate soy oil in margarine as long as it wasn't the first ingredient, but now, I can't handle it any longer--I now use butter.

Cody--try canola oil salad dressing. I had switched to Hellman's Canola Mayo, but everyone BEWARE, they have changed the ingreds--it is now cholesterol free and contains soy--they ruined it.

Oh yeah Cody--some celiacs have trouble with corn too.

hathor Contributor

My soy or corn reactions now cause a nasty rash. I never get much, if I get any, so it's usually just a nasty rash, if I get too much, then I also get constipapted, this week, I got just a little too much and ended up with both and had to really think about what I had eaten....

It is true that some people that can't have soy can tolerate soy oils, yet, sometimes, even that changes. I could tolerate soy oil in margarine as long as it wasn't the first ingredient, but now, I can't handle it any longer--I now use butter.

Just piping up to say I have the same symptoms with soy. (I don't have a problem with corn, but I can't have dairy or eggs -- I guess it balances out :rolleyes: )

I also found that my sensitivity to soy increased as it was eliminated from my diet. I never even noticed a problem with it to begin with; the Enterolab result surprised me. But I cut out soy (except for soy lecithin which I was told was probably OK for me) and my skin cleared up, I had fewer hot flashes, and my bowels worked better.

A couple weeks later I noticed my symptoms returned. The only new thing I could think of was a nutritional supplement. It didn't say it had soy, but it didn't say it didn't have soy either. I contacted the company and found it contained soy. (Unfortunately, allergens don't have to be listed on supplements and medicine.)

I decided to test soybean oil a few weeks ago and flunked. So obviously I can't hack it. I even decided to cut out soy lecithin to see if things improve. The only problem I faced was chocolate. But yesterday in the store I found a dark chocolate bar without the stuff. Oh, joy! I've seen them on the internet, but I don't trust myself to order an entire case :lol: My husband said he would keep it in his office & slowly dole it out to me, but I think that would put an incredible strain on our marriage :rolleyes: I'm also not sure if I trust HIM with an entire case either ;)

Oh well, it is probably a good thing that I don't have easy access to my drug of choice ...

kabowman Explorer

I am intolerant to soy lectin (and soy oil).

Katydid Apprentice
Also Cody--if you have only been gluten free for 2 months, your body is still ridding itself of toxins from the gluten. It takes time to recover from years of gluten, it never happens overnight.

My soy or corn reactions now cause a nasty rash. I never get much, if I get any, so it's usually just a nasty rash, if I get too much, then I also get constipapted, this week, I got just a little too much and ended up with both and had to really think about what I had eaten. My diet is so controlled now, it's hard for anything to get pass me. This time it was something I had eaten at my celiac support meeting. For some reason, I get it in my head that I am totally safe there and can put anything into my mouth, yet I forget that now all celiacs are soy and corn free!!! :huh: I had a very nasty, fire red rash yesterday morning and the pains of mild constipation---one day I may learn--this is where the brain fog enters--right???

It is true that some people that can't have soy can tolerate soy oils, yet, sometimes, even that changes. I could tolerate soy oil in margarine as long as it wasn't the first ingredient, but now, I can't handle it any longer--I now use butter.

Cody--try canola oil salad dressing. I had switched to Hellman's Canola Mayo, but everyone BEWARE, they have changed the ingreds--it is now cholesterol free and contains soy--they ruined it.

Oh yeah Cody--some celiacs have trouble with corn too.

Open Original Shared Link

I got a chuckle out of your post about eating something wrong at your celiac support meeting. (but not because its funny) That happens to my husband every once in a while. He has severe reactions (similar to gluten)if he ingests anything with MSG or TBHQ in it. He sometimes forgets that when we go to our gluten free potlucks. He just gets so excited about seeing a 50' buffet table covered with the most beautiful and deliciously mouth watering gluten free food. I know its hard, but I've told him he should only eat what I bring; and any fruits and veggies. I am absolutely amazed how hard it is to find things without MSG since I thing a lot of people have trouble with it.

melmak5 Contributor

This week was a really rough week. I was in a lot of pain, not eating during daylight hours so I could function at work and falling asleep as soon as I did come home. I really lost my fight and was feeling like I would never get better.

This weekend my mother mentioned "oh as a baby you couldn't eat rice."

4 hours later when I was doubled over in pain and had only eaten rice noodles for the day it clicked.

I have been 48 hours rice-free and while I don't feel 100%, its like my head has been lifted out of a fishbowl and I am not in pain!

I am still going to go to the allergist next week (I had another reaction to fresh fruit, a banana) so I want to figure out what is going on, but if not eating rice helps, I am down with it.

I had no idea that people could have allergies/intolerances to rice, because it is one of the ONLY things people have been telling me to eat.

Cody, I hope you find your culprit!

Sugarmag Newbie
Am I the ONLY one who reacts to soy lecithin??? It give me an itchy rash on my hands every time I try it. :angry:

Jeanne

Nope, you are definitely not the only one!! I can not tolerate any soy lecithin either! I even tried to chew a piece of regular gum, for like, 2 min...then spit it out...sure enough...rash all over my neck, chest, and jawline!! It seems to take a while for my rash to completely disappear too...so it's super annoying!

hathor Contributor

I'm so irked. We were talking about calcium supplements on another thread and so I looked at mine, which I had started using some months ago because it said it was free of everything I need to be free of. It is still shown that way on the company's web site. However, now the label on the bottle I have said that it has soy lecithin in the glaze. Looks like the same product to me.

7-cody Apprentice
This week was a really rough week. I was in a lot of pain, not eating during daylight hours so I could function at work and falling asleep as soon as I did come home. I really lost my fight and was feeling like I would never get better.

This weekend my mother mentioned "oh as a baby you couldn't eat rice."

4 hours later when I was doubled over in pain and had only eaten rice noodles for the day it clicked.

I have been 48 hours rice-free and while I don't feel 100%, its like my head has been lifted out of a fishbowl and I am not in pain!

I am still going to go to the allergist next week (I had another reaction to fresh fruit, a banana) so I want to figure out what is going on, but if not eating rice helps, I am down with it.

I had no idea that people could have allergies/intolerances to rice, because it is one of the ONLY things people have been telling me to eat.

Cody, I hope you find your culprit!

thanks!

yesterday, I ate a crapload of tofu for the heck of it. Needless to say, I feel like -insert bad word here-.

I hope I'm not imagining things. Its hard to tell what kid of reactions you get when you already feel crummy, but my head starting pounding a little and then it went away after a while. Now, today, I'm so brain fogged I can't even do anything right. I went out to my car three times this morning to get my briefcase. First time, I went out, couldn't remember why I went out. Sat out there a minute then just came back in. Second time, I noticed my utility bill and started reading it. Third time, I finally just went straight out there, grabbed my brief case, then came back in. I feel like it takes a half hour just to grab my brief case!

Now, don't get me wrong, this brain fog is normal for. It's not normally this bad but it definitely can be and has been plenty of times.

I hope I'm not imagining things. It's hard to tell exactly what is bothering me. I'm going grocery shopping tonight and then after that, it's going to be as soy free as I know how to be. If soy doesn't fix me, oh well, it's only 2-4 weeks of my life. Just like gluten-free has only been 2.5 months of my life. If soy doesn't work, I'm eating nothing but avacados and chicken for the rest of my life (jk, I wish I could do that)!

I'm so irked. We were talking about calcium supplements on another thread and so I looked at mine, which I had started using some months ago because it said it was free of everything I need to be free of. It is still shown that way on the company's web site. However, now the label on the bottle I have said that it has soy lecithin in the glaze. Looks like the same product to me.

ya gotta love it...

edit: how do you know if your intolerance to soy is an intolerance or an allergy? do most of you guys here consider you intolerance to soy an intolerance or an allergy? if it was an allergy, id have to be careful to even breathe or come into contact with it, wouldn't I?

hangininthere, you mentioned that you get brain fog from soy? That's my major concern, that and constipation. Sometimes I go 10+ day without a bowel movement. can that be caused by soy as well?

codetalker Contributor
For anyone who has already done it, how long after cutting out soy did you notice a difference physically/mentally?

For me, soy is one of several intolerances that cause something in the right side of my neck to swell up as well as difficulty swallowing. The reaction happens within several hours and takes 3-7 days to subside.

hangininthere Apprentice

'Behavioral Food Allergies' cause neurological symptoms such as brain fog, and also they can cause symptoms such as anger and mood swings and the like.

And a 'regular' food allergy gives you physical symptoms such as trouble breathing or a rash and other physical symptoms, ranging from mild to anaphylactic shock.

I haven't been tested by a doctor for anything, I'm just guessing from my symptoms.

I call myself gluten and soy intolerant, because I certainly can't tolerate them, ha.

I think that whether an intolerance or allergy, we must avoid contact with the offender either way, if we don't want symptoms from it.

I too suffered from constipation all my life, including after getting off glutens and soy - my constipation remained the same - I too go ten days inbetween bowel movements. I think mine is from 'sluggish' bowels, they just won't move on their own.

Nothing and I mean nothing helped until I discovered magnesium a year ago, and now I go every morning like clockwork.

I get my magnesium capsules at the GNC health supplement store, the GNC brand Magnesium 500, they are gluten and soy free.

What a relief to have found something that works - that helps clear up some brain fog right there, really perks you up to stay regular.

The magnesium has helped my sleep apnea tremendously too, and I wake up much more alert instead of in a total fog for hours as before.

I take a high dose, two 500 mg. capsules at bedtime every night. Anything less doesn't work for me at all.

7-cody Apprentice
'Behavioral Food Allergies' cause neurological symptoms such as brain fog, and also they can cause symptoms such as anger and mood swings and the like.

And a 'regular' food allergy gives you physical symptoms such as trouble breathing or a rash and other physical symptoms, ranging from mild to anaphylactic shock.

I haven't been tested by a doctor for anything, I'm just guessing from my symptoms.

I call myself gluten and soy intolerant, because I certainly can't tolerate them, ha.

I think that whether an intolerance or allergy, we must avoid contact with the offender either way, if we don't want symptoms from it.

I too suffered from constipation all my life, including after getting off glutens and soy - my constipation remained the same - I too go ten days inbetween bowel movements. I think mine is from 'sluggish' bowels, they just won't move on their own.

Nothing and I mean nothing helped until I discovered magnesium a year ago, and now I go every morning like clockwork.

I get my magnesium capsules at the GNC health supplement store, the GNC brand Magnesium 500, they are gluten and soy free.

What a relief to have found something that works - that helps clear up some brain fog right there, really perks you up to stay regular.

The magnesium has helped my sleep apnea tremendously too, and I wake up much more alert instead of in a total fog for hours as before.

I take a high dose, two 500 mg. capsules at bedtime every night. Anything less doesn't work for me at all.

Wow, okay, I'll have to try that. magnesium eh?

going soy free didn't help your constipation?

I was reading the other day that soy can affect you a WEEK later, it can also last a week... so I'm guessing ill probably need to go soy free for like at least 2 weeks or so to feel better...

You sound just like me. all of your symptoms except sleep apnea. I'm 19 and was tested for sleep apnea, they said that I had one apnea all night but when I'm older it'll probably be a lot worse.

how do you feel now? is your brain fog completely gone? what else should I try besides soy free and magnesium?

7-cody Apprentice
Hehe you're welcome in advance. :)

Avoiding soy is very easy. It's a Top 8, and I've been seeing "contains soy" everywhere since well before it was mandatory.

I had the most miraculous set of vast improvements since quitting soy.

May you have the same. :)

I've read of ppl who can't have soy, except when it's 'soy lecithin'. I don't know what it is and I don't wanna know.

But it is somewhat common in processed foods.

I probably should have asked you this earlier, but what are some of the improvements/symptoms that disappeared since you went soy free?

Also, do I want to read ingredients still or do I just check for "soy"?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,966
    • Most Online (within 30 mins)
      7,748

    Susan Allsopp
    Newest Member
    Susan Allsopp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
×
×
  • Create New...