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Specific Carbohydrate Diet?


PreOptMegs

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dlp252 Apprentice

I'm still following everyone's progress here even though I'm not strictly doing SCD (so I guess not doing it at all then, lol). I've very interested in the corn thing.

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corinne Apprentice

WOOHOO! As of today, I have been on the SCD and dairy free for 3 months.

Pluses - no diarrhea, stomache cramps, gas, mouth sores. Normal periods. Lots of energy. I can't believe the change. The biggest change - I'm down to 1.5 peptobismol per day from 8.

Minuses - my weight is really low. That will change eventually when I can tolerate nuts and fats.

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dlp252 Apprentice

Corinne that's FANTASTIC!!!!! Congratulations!

I did see some positives myself, my BMs are now nearly normal which is fantastic all by itself, lol. I did still have some problems, the most bothersome was severe burning in my stomach. I'm wondering if some of my problems aren't connected with my enlarged pancreatic/bile duct...if it can't squirt out the necessary enzymes or the flow is restricted, it might be responsible for some of my ills. I'll have to ask my doctor when I see him.

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Guest greengirl

That's great, Corinne!

I, too, am seeing improvement after only 1 month - resolved D, no stomach cramps, more energy! Like Donna, though, I do sometimes experience abdominal burning. I have a suspicion that the bananas might be causing this for me. Two weeks ago I felt great and wasn't eating bananas because the bunches I bought weren't ripe enough. When they ripened up I started noticing the burning again.

This is weird because bananas are supposed to be so easy to digest and I even read that they help to heal stomach ulcers. I do remember others posting that they couldn't tolerate bananas, either, so there must be something about them...For now I'm going to stay away from them. I really need to get a food diary going so I can keep better track...

It's good to hear that some of you are making progress on the SCD! I like to hear success stories because occasionally I think, "What am I doing this for?" Only occasionally, though! I really am making progress, but sometimes I mourn my old life and it's good to hear from other people doing the same thing.

Christine

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danikali Enthusiast

I just want to add to the corn intolerance part of this thread:

THANK YOU RACHEL, AGAIN, for posting the corn info.

I now consider myself symptom free, unless I get glutened, and it's only been once in the past couple weeks I've been corn free, and I knew it was gluten because I kissed my fiance after he ate tons of pretzals and broke out with exzema, or some type of rash around my lips, which spread to the rest of my face and I also got muscle pains that I ONLY GET IF I EAT GLUTEN. But other than that, stomach problems are GONE, acid indigestion, GONE, back burning, GONE, nerve headache, GONE, bloating, GONE, foul gas, GONE! Those were all of my lingering everyday symptoms that I had after eliminating dairy and gluten and even still being on the SCD. I can tolerate any fruit or veggies now, cooked, uncooked, any amount and I'm back to my 'salt free' rice cakes. I feel like a whole new person, literally. I can actually concentrate on other things besides my health....FINALLY! I really almost can't believe it.

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jerseyangel Proficient

Dani--I'm so happy that you figured out the source of your lingering symptoms and are feeling so well! You've been through a lot with this thing :( Stay well!

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Rachel--24 Collaborator
I just want to add to the corn intolerance part of this thread:

THANK YOU RACHEL, AGAIN, for posting the corn info.

I now consider myself symptom free, unless I get glutened, and it's only been once in the past couple weeks I've been corn free, and I knew it was gluten because I kissed my fiance after he ate tons of pretzals and broke out with exzema, or some type of rash around my lips, which spread to the rest of my face and I also got muscle pains that I ONLY GET IF I EAT GLUTEN. But other than that, stomach problems are GONE, acid indigestion, GONE, back burning, GONE, nerve headache, GONE, bloating, GONE, foul gas, GONE! Those were all of my lingering everyday symptoms that I had after eliminating dairy and gluten and even still being on the SCD. I can tolerate any fruit or veggies now, cooked, uncooked, any amount and I'm back to my 'salt free' rice cakes. I feel like a whole new person, literally. I can actually concentrate on other things besides my health....FINALLY! I really almost can't believe it.

Thats awesome Dani!

I'm glad you're feeling normal again...I knew it would happen! Now you just have to make sure your wedding cake is gluten AND corn-free. :D

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danikali Enthusiast
Thats awesome Dani!

I'm glad you're feeling normal again...I knew it would happen! Now you just have to make sure your wedding cake is gluten AND corn-free. :D

Thank you for the support Patti and Rachel! I couldn't have learned all this on my own! I think we've all been through a lot with this thing......but thank God we have this site and each other to get down to the bottom of things!

You're right Rachel, I was thinking about my wedding cake and wondering what's it's going to be made with considering I can't have dairy, gluten or corn........haha...if they can't figure anything out, I honeslty don't even care....I'm just so happy that I can eat and not get sick.

Anyway, both of you have helped me so much. Thank you for helping me figure things out. And how are you feeling?

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Green12 Enthusiast
I just want to add to the corn intolerance part of this thread:

THANK YOU RACHEL, AGAIN, for posting the corn info.

I now consider myself symptom free, unless I get glutened, and it's only been once in the past couple weeks I've been corn free, and I knew it was gluten because I kissed my fiance after he ate tons of pretzals and broke out with exzema, or some type of rash around my lips, which spread to the rest of my face and I also got muscle pains that I ONLY GET IF I EAT GLUTEN. But other than that, stomach problems are GONE, acid indigestion, GONE, back burning, GONE, nerve headache, GONE, bloating, GONE, foul gas, GONE! Those were all of my lingering everyday symptoms that I had after eliminating dairy and gluten and even still being on the SCD. I can tolerate any fruit or veggies now, cooked, uncooked, any amount and I'm back to my 'salt free' rice cakes. I feel like a whole new person, literally. I can actually concentrate on other things besides my health....FINALLY! I really almost can't believe it.

This is great news dani!! Congratulations to you for figuring your personal health mystery out, and better yet for getting positive results and finally feeling good :D

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danikali Enthusiast
This is great news dani!! Congratulations to you for figuring your personal health mystery out, and better yet for getting positive results and finally feeling good :D

Thank you Julie! But like I said, I COULD HAVE NEVER FELT THIS GOOD AND FIGURED THIS OUT WITHOUT EVERYONE ON THIS BOARD. I really am sooooo thankful for everyone here......I feel like you're all my best friends because you understand and are going through such a tough thing WITH me. No one else could understand, give this kind of support and knowledge.

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dlp252 Apprentice
I just want to add to the corn intolerance part of this thread:

THANK YOU RACHEL, AGAIN, for posting the corn info.

I now consider myself symptom free, unless I get glutened, and it's only been once in the past couple weeks I've been corn free, and I knew it was gluten because I kissed my fiance after he ate tons of pretzals and broke out with exzema, or some type of rash around my lips, which spread to the rest of my face and I also got muscle pains that I ONLY GET IF I EAT GLUTEN. But other than that, stomach problems are GONE, acid indigestion, GONE, back burning, GONE, nerve headache, GONE, bloating, GONE, foul gas, GONE! Those were all of my lingering everyday symptoms that I had after eliminating dairy and gluten and even still being on the SCD. I can tolerate any fruit or veggies now, cooked, uncooked, any amount and I'm back to my 'salt free' rice cakes. I feel like a whole new person, literally. I can actually concentrate on other things besides my health....FINALLY! I really almost can't believe it.

Dani that is WONDERFUL!!!!! I am so happy. I think I'm convinced I should also try to cut out corn...I'm having many of the same lingering problems that you had and the last link is that I haven't cut out the many possible sources of hidden corn. It certainly couldn't hurt for a few weeks. My stomach has been more bloated this week than it's EVER been, even when I was 40 pounds heavier. It's been really uncomfortable. I've also been getting nerve headaches, bad stomach acid, other stomach problems, pain and foul gas. I've been eating good stuff too, meats, veggies, fruits, nut butters and Lara bars, but I haven't paid attention to the hidden corn issue.

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danikali Enthusiast

Donna, you really should try it, especially considering that all of what you are going through were my lingering symptoms as well. I thought I was eating everything safe before until I realized that corn wax issue on fruits and veggies, and possible supplement problems. It's weird how just washing my veggies REALLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLY WELL and peeling fruits like apples and pears have made such a HUGE difference. Oh, and of course the salt thing and avoiding citric acid in things like applesauce. And let us know. I'm interested!

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dlp252 Apprentice
Donna, you really should try it, especially considering that all of what you are going through were my lingering symptoms as well. I thought I was eating everything safe before until I realized that corn wax issue on fruits and veggies, and possible supplement problems. It's weird how just washing my veggies REALLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLY WELL and peeling fruits like apples and pears have made such a HUGE difference. Oh, and of course the salt thing and avoiding citric acid in things like applesauce. And let us know. I'm interested!

Yep, those are the things I haven't been careful with. I have peeled my pears but not my apples and I eat a TON of salt. I am also sure there has to be some in my supplements. I go shopping tomorrow, but probably will start Sunday when I have more control over my situation. I need to get a few days good headstart before I tackle a Saturday, lol. I wonder if the liquid supplements have corn sweetener in them.

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Green12 Enthusiast
Yep, those are the things I haven't been careful with. I have peeled my pears but not my apples and I eat a TON of salt. I am also sure there has to be some in my supplements. I go shopping tomorrow, but probably will start Sunday when I have more control over my situation. I need to get a few days good headstart before I tackle a Saturday, lol. I wonder if the liquid supplements have corn sweetener in them.

I went off all my supplements, except for magnesium citrate and only eat fruits, vegetables, meats, and avocados and olive oil for the time being. I haven't had GERD once since and I had been having it really bad lately. I've lost my inflamation, and weight (I was really bloated and inflamed). I'm sure there has been other benefits but I can't think of them right now.

I did a test and for pre-Cinco de Mayo last night I had tamales, corn chips, corn and bean salsa, and guacamole, then topped it off with Haagen Dazs Mango ice cream (it has corn syrup in it). Very yummy-liscious but oh, did I pay for it! I had gas immediately, my stomach bloated up, and my heart started racing like mad. My /acupuncturist/kinesiologist (sp?) said you could test a food by clearing it out of your diet completely and then testing it by eating a little and monitoring your pulse afterward to see if it raises, don't know if there is anything to that, but it definitely happened with me last night after having a corn fest!

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Rachel--24 Collaborator

Donna,

I get the nerve headaches too. I actually get facial swelling and I can see and feel the veins pulsing in my temples and other areas on my head. My veins get swollen all over my body but since I went corn free its only happened a couple times when I've made mistakes. Its been 2 weeks now and I still have the 10 lbs. I gained! This never happens....usually if I gain its all water and its gone in the morning. I could somehow lose up to 7 or 8 lbs. over night. I'm having no problems so far with corn-free milk (no vitamins) but whenever I've had eggs I've woken up drenched in sweat....so still no eggs.

I wonder if the liquid supplements have corn sweetener in them.

Most likely they do...especially vitamins. I'm not kidding when I say corn is everywhere....it literally is.

I saw Dr. R. earlier this week for a follow-up to my CT scan and colonoscopy. Even though my colonoscopy was incomplete he says he's confident everything is fine. He says I have IBS (it was hard not to laugh) from food intolerances. He doesnt think its allergies....more likely intolerances. I've already had allergy tests done but it might not hurt to have them again since its been awhile. I had alot of impacted stool (ALOT) seen on the CT scan so he said that it was a blockage probably caused by the food intolerance and IBS. I asked him about corn causing celiac-like symptoms and malabsorption but he said that he cant answer because theres not really any research done on it. He said he wanted to send to to a Celiac specialist at Stanford even though I'm not diagnosed. I dont know what this guy can do for me at this point but I guess I'll wait and see. When I got home from my appt. the nurse called me saying that he wants to run some more bloodwork...I asked what it was for and she said gene testing for Celiac. I've already told him I had gene testing from Enterolab and I dont have either Celiac gene. Oh well...if insurance covers it I'll take the test anyways. Have you had a follow-up with him yet? I like him alot because he is very thorough...and he doesnt rush in and out.

I did a test and for pre-Cince de Mayo last night I had tamales, corn chips, corn and bean salsa, and guacamole, then topped it off with Haagen Dazs Mango ice cream (it has corn syrup in it). Very yummy-liscious but oh, did I pay for it! I had gas immediately, my stomach bloated up, and my heart started racing like mad. My /acupuncturist/kinesiologist (sp?) said you could test a food by clearing it out of your diet completely and then testing it by eating a little and monitoring your pulse afterward to see if it raises, don't know if there is anything to that, but it definitely happened with me last night after having a corn fest!

Julie, thats what happens to me now too....its pretty much the first sign I've messed up. That and blisters in my mouth or burning/tingling on my tongue. I actually did have all these symptoms when I was on a regualr diet but I thought my heart was racing due to Graves Disease. Before I couldnt make a connection between my symptoms and food but now its very obvious. The "cleaner" you become the more noticeable the symptoms are.

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Green12 Enthusiast
The "cleaner" you become the more noticeable the symptoms are.

Rachel, that is SO true. I am a complete believer. If you are ingesting a food continually you might have bad symptoms but it's really hard to tell what is what. I have always eaten vegetables and meats and pure fats, etc. but I was having a Food For Life Rice Tortilla every day for lunch (has xanthum gum in it). It wasn't until I eliminated the tortilla and the supplements and the deli turkey meat (I think it had some preservatives in it) that I was able to literally clean my system of all potential allergens. Then 2 weeks later I add in the suspects and bam, an immediate clear as day reaction.

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dlp252 Apprentice
Donna,

I get the nerve headaches too. I actually get facial swelling and I can see and feel the veins pulsing in my temples and other areas on my head. My veins get swollen all over my body but since I went corn free its only happened a couple times when I've made mistakes. Its been 2 weeks now and I still have the 10 lbs. I gained! This never happens....usually if I gain its all water and its gone in the morning. I could somehow lose up to 7 or 8 lbs. over night. I'm having no problems so far with corn-free milk (no vitamins) but whenever I've had eggs I've woken up drenched in sweat....so still no eggs.

Most likely they do...especially vitamins. I'm not kidding when I say corn is everywhere....it literally is.

I saw Dr. R. earlier this week for a follow-up to my CT scan and colonoscopy. Even though my colonoscopy was incomplete he says he's confident everything is fine. He says I have IBS (it was hard not to laugh) from food intolerances. He doesnt think its allergies....more likely intolerances. I've already had allergy tests done but it might not hurt to have them again since its been awhile. I had alot of impacted stool (ALOT) seen on the CT scan so he said that it was a blockage probably caused by the food intolerance and IBS. I asked him about corn causing celiac-like symptoms and malabsorption but he said that he cant answer because theres not really any research done on it. He said he wanted to send to to a Celiac specialist at Stanford even though I'm not diagnosed. I dont know what this guy can do for me at this point but I guess I'll wait and see. When I got home from my appt. the nurse called me saying that he wants to run some more bloodwork...I asked what it was for and she said gene testing for Celiac. I've already told him I had gene testing from Enterolab and I dont have either Celiac gene. Oh well...if insurance covers it I'll take the test anyways. Have you had a follow-up with him yet? I like him alot because he is very thorough...and he doesnt rush in and out.

Okay, I think I'd better leave out the supplements for a while. I don't get mouth blisters but I am still getting sores in my mouth once in a while--I'm not sure I'd call them blisters, but I guess they do have a kind of blister-like part to them.

Yes, I've seen Dr. R a couple of times...for a follow-up after my first endo/colonoscopy. I too have IBS, lol. I had some damage in my esophagus, with a bit of blood, but he barely talked about that at all and the biopsies he took from there came back negative. I also had a polyp in my stomach which he removed. But while doing the endo he saw an enlarged pancreatic bile duct, but couldn't get to it to take a biopsy, so I had a second endo a week later. I was getting worried because he said he would call me with results and I didn't hear from him...it turns out that first biopsy report said the growth was benign, but he said he had "another case like mine" and had it rechecked and that's why it took so long to get back to me. The second report came back with pre-cancerous cell changes. He's having it looked at again just to be certain--I see him on Monday to hear the results of that and find out what comes next. He's already told me that if it's precancerous it has to come out, but that he can't do that kind of surgery because it involves the ducts...so I guess he'll be referring me to a surgeon. Anyway, I do really like him.

Wow, that's great that he wants to send you to Stanford. Ha, I actually do have one of the genes...maybe I should mention that to him, lol.

I went off all my supplements, except for magnesium citrate and only eat fruits, vegetables, meats, and avocados and olive oil for the time being. I haven't had GERD once since and I had been having it really bad lately. I've lost my inflamation, and weight (I was really bloated and inflamed). I'm sure there has been other benefits but I can't think of them right now.

I did a test and for pre-Cince de Mayo last night I had tamales, corn chips, corn and bean salsa, and guacamole, then topped it off with Haagen Dazs Mango ice cream (it has corn syrup in it). Very yummy-liscious but oh, did I pay for it! I had gas immediately, my stomach bloated up, and my heart started racing like mad. My /acupuncturist/kinesiologist (sp?) said you could test a food by clearing it out of your diet completely and then testing it by eating a little and monitoring your pulse afterward to see if it raises, don't know if there is anything to that, but it definitely happened with me last night after having a corn fest!

Well the GERD comment got my attention, lol. I've had it so bad lately. I love fruit, veggies, meats, avocados and olive oil, so I could sure handle those I think.

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Guest greengirl
He's having it looked at again just to be certain--I see him on Monday to hear the results of that and find out what comes next. He's already told me that if it's precancerous it has to come out, but that he can't do that kind of surgery because it involves the ducts...so I guess he'll be referring me to a surgeon. Anyway, I do really like him.

Donna,

I hope you get good news on Monday. Let us know. It sounds like your doctor is being very thorough, so that's a good thing!

Also, let me know if removing corn from your diet helps the burning feeling you've had. I still am having that problem even with bananas removed (which I thought was the culprit). I don't think corn is my problem because I don't have any other symptoms, but you never know...

Christine

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Green12 Enthusiast
Well the GERD comment got my attention, lol. I've had it so bad lately. I love fruit, veggies, meats, avocados and olive oil, so I could sure handle those I think.

dlp, it got my attention too, lol!

I am convinced now it has to be the hidden corn and corn derivatives. I had cleared out all of the usual suspects for GERD, spicy foods, tomatoes, etc. and I still was having symptoms. I was so depressed because I was getting GERD after just eating rice and chicken, but it was the other things in the day I was having and probably the accumulation of that hidden corn.

Donna,

I hope you get good news on Monday. Let us know. It sounds like your doctor is being very thorough, so that's a good thing!

Also, let me know if removing corn from your diet helps the burning feeling you've had. I still am having that problem even with bananas removed (which I thought was the culprit). I don't think corn is my problem because I don't have any other symptoms, but you never know...

Christine

greengirl, what all are you eating and are you taking any supplements? Sometimes I would experience burning in my stomach with my supplements if I took them without food or even just a little food. Don't know if this is the case for you but just a thought.

Some people with corn allergies cross react with bananas, they share a similar protein. But if you took them out and still have the burning, I don't know. Are you peeling your fruit?

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jerseyangel Proficient

If I can stick my nose in this for a second--I know I'm intolerant to corn, and I have been avoiding obvious sources for longer than I've been gluten-free. Just recently (the last week or so) I've gotten more strict with it. I have noticed a reduction in my reflux, as well as the gas :ph34r: . It's really worth it!

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Green12 Enthusiast
If I can stick my nose in this for a second--I know I'm intolerant to corn, and I have been avoiding obvious sources for longer than I've been gluten-free. Just recently (the last week or so) I've gotten more strict with it. I have noticed a reduction in my reflux, as well as the gas :ph34r: . It's really worth it!

jersey, you aren't sticking your nose in! We are all in this together!

I'm glad you're GERD has been reduced, that is nasty stuff.

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dlp252 Apprentice

Thanks Christine!

Patti, you've just cemented it for me, lol.

I've been trying to cut out all the usual suspects for GERD too, and have still had it so bad. I wake up in the middle of the night with a burning in my stomach and once I'm awake can't go back to sleep. Dr. R has me taking Prilosec OTC and that has at least kept it at a minimum, but I'm afraid of what's going to happen when I quit taking it (tomorrow is my last day of a 14 day course). I really don't want to take medicine like that forever!

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jerseyangel Proficient
Thanks Christine!

Patti, you've just cemented it for me, lol.

I've been trying to cut out all the usual suspects for GERD too, and have still had it so bad. I wake up in the middle of the night with a burning in my stomach and once I'm awake can't go back to sleep. Dr. R has me taking Prilosec OTC and that has at least kept it at a minimum, but I'm afraid of what's going to happen when I quit taking it (tomorrow is my last day of a 14 day course). I really don't want to take medicine like that forever!

My dr had me on Prevacid but I stopped after 3 weeks because of the side effects--the reflux was creeping back, and now that I've cut out the corn even further, it is better. I also find that I have to limit raw fruit. The middle of the night stuff is terrible--I hope you get relief soon :)

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Guest greengirl
greengirl, what all are you eating and are you taking any supplements? Sometimes I would experience burning in my stomach with my supplements if I took them without food or even just a little food. Don't know if this is the case for you but just a thought.

Some people with corn allergies cross react with bananas, they share a similar protein. But if you took them out and still have the burning, I don't know. Are you peeling your fruit?

I'm only eating SCD legal foods. I was taking Prevacid, but didn't take it today to see if that could be causing something (not sure if that's SCD legal). I still have the burning today, but I probably need to give it more than a day off to see if it has an effect. Lately the fruits I've been eating don't require peeling - watermelon, berries, strawberries, lime juice. I have been peeling apples and cooking them. Maybe the fruits are just too acidic. I have cut out tomatoes because of that (even though they're my favorite!!)

I did take a calcium supplement this morning because I just found out yesterday that I have osteopenia (the step before osteoporosis). Can you believe it?? At age 37, my bones are apparently like that of a 65 year old!! My doctor said it's no surprise given my GI history. I would recommend a bone scan for everyone with gluten intolerance - the earlier the better!!

Christine

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Rachel--24 Collaborator
Rachel, that is SO true. I am a complete believer. If you are ingesting a food continually you might have bad symptoms but it's really hard to tell what is what. I have always eaten vegetables and meats and pure fats, etc. but I was having a Food For Life Rice Tortilla every day for lunch (has xanthum gum in it). It wasn't until I eliminated the tortilla and the supplements and the deli turkey meat (I think it had some preservatives in it) that I was able to literally clean my system of all potential allergens. Then 2 weeks later I add in the suspects and bam, an immediate clear as day reaction.

Julie,

OMG.... Back in December I discovered those tortillas and started eating them everyday for a couple weeks. I got so much sicker but I was always sick so couldnt tell what was what but I stopped eating the tortillas. I actually returned an unopened package to the store cuz I just didnt want to eat them anymore. They were good though and I was sad about not being able to eat them....I thought it was something in the oils they used.

Since finding out about corn I've checked out all the stuff I used to eat that gave me reactions and every one of them conatined corn in some form or another. I really react to xanthan gum. It was a reaction to that particular ingredient (in a cake mix) which got me thinking and made me go back and reread Simply's V's post about corn.

I think the tortillas are about the only thing I hadnt went back and looked at the ingredients on....I always do this when I'm shopping. :rolleyes: I've found corn in everything so far but I dont remember seeing xanthan gum when I bought those tortillas...of course I wasnt concerned about corn at the time but I always check ingredients anyway. Is there really Xanthan gum in them cuz that would explain why I got so much worse? I was eating them on Christmas and I got really brain-fogged and the usual headache with veins throbbing. I was getting migraines while I was eating the tortillas but never once suspected them as being the cause. I also got a migraine after eating the cake with xanthan gum in it 3 weeks ago. I got MAJOR symptoms from that cake but probably because the only corn I was getting at the time was in my thyroid pills.

If I can stick my nose in this for a second--I know I'm intolerant to corn, and I have been avoiding obvious sources for longer than I've been gluten-free. Just recently (the last week or so) I've gotten more strict with it. I have noticed a reduction in my reflux, as well as the gas :ph34r: . It's really worth it!

Jersey,

Just recently I started having problems with acid reflux. I dont remember having it before...or at least not this bad. I got it really bad when I ate the cake I just posted about and a couple other times when I messed up on my corn diet. I was asking about GERD on JnkMnky's thread about it...I didnt know if thats what I had but it was a burning pain in my chest and in my throat. It was way worse if I bent over. It was like a really full feeling in my chest and throat...I was also really bloated...it kind of hurt to breathe. Is this GERD? Anyways it hasnt happened again since I've been doing well on the diet. I mentioned it to the GI and he was gonna give me a medication (I think it was Nexium or something like that....started with an N??). I told him I dont want any medicines and I dont need any as long as I dont eat corn. Besides I'm sure the medicine has corn in it!! Does what I described sound like GERD or acid reflux? Are they the same thing or 2 seperate things? :unsure:

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    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet



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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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