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For Those Of You With Corn Allergies/sensitivites


danikali

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danikali Enthusiast

Hi,

Well, thanks to Rachel, I have figured out another cause for many (hopefully all) of my remaining symptoms. The most important one is my weird nerve/migrane headache is gone for the first time in a lonnnnnnng time, and it disappeared the first day that I took corn and everything derived from it out of my diet. But I have a question regarding vitamans. On the loooooong list that I have for things to avoid with avoiding corn, it has vitamans on there. My question is, even if my vitamans say 'corn free' could they still have corn in them?

Okay, haha this might sound like a stupid question, but I have a bladder infection and really want to get back to taking my cranberry pills regularly to avoid this, and it DOES say corn free, but I just want to be sure because if I'm as sure about this as I think I am, then I want to stay away from any possibilites.

Also, any other helpful info. that you may have on products/meds./etc. would be great, if you could just throw it out there.

Thanks!


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Green12 Enthusiast

dani, great idea for this thread!

I am finding it confusing to compile a list of corn free products and etc. (some contradictory information and not a whole lot of thorough sources at least with what I have researched) ............and then to make them corn AND gluten free, even more challenging.

I found this link when I was investigating about meds and supplements:

Open Original Shared LinkOpen Original Shared Link

Keep in mind this information is for corn free, not necessarily gluten free as well.

Rachel--24 Collaborator

Dani, this is what I would recommend...and this goes for any elimination diet...not just corn. I wouldnt take any meds/supplements for a couple weeks unless you're 100% sure they are corn/gluten free. The capsule is often vegetarian or corn based. I remember reading somewhere that when you are starting an elimination diet...especially corn since its in everything...its best not to take pills unless you absolutely require them. I wouldnt worry about taking vitamins right now.

Since you dont know whether you're corn intolerant or not you really have to eliminate ALL corn in order to know for sure. You could be intolerant to other things as well and supplements have a bunch of stuff in them that can cause reactions. If you end up free of symptoms then add in your cranberry pills and see if you still feel good but make sure you dont add other stuff in at the same time cuz you could get confused. When trying new things eat it or take it (if its a pill) for a few days and if you still feel fine then assume its safe and then do the same for the next thing you want to add in.

danikali Enthusiast

Okay, this is so confusing to me. Well, I took out all corn, as best as I could and my stomach is getting better everyday. I haven't had pain in my stomach or gas and I am (so far) tolerating everything that I eat. I'm eating lots of fruit, rice cakes, fish, meat and lots of fresh veggies that I'm washing EXTREMELY WELL and the fruit I'm eating is only in peals, for now anyway. I haven't had heartburn at night or anything. Well, at least since Monday, but this is all a big deal because when I was on the SCD diet, these things were still happening at least once a day. Okay, so today I added in the cranberry pills because they really do help with the bladder infections that I always get (unless taking the pills) and now that stupid migrane/weird nerve headache is back! The pills say free of corn, gluten, soy, dairy, starch, sugar, salt, pretty much everything. But there is vegetable cellulose in it, and two other things I forgot. SOMETHING in there is causing these headaches. But what else can I do about these stupid bladder infections? I can't take any pills then...no cranberry, no grapefruit seed extract, no acidopholis, which all says free of all of the things I mentioned before! So frustrating!

Rachel--24 Collaborator

I dont think I would trust that the pills are corn free. I've been noticing lots of foods that are labeled corn free that actually have one or more corn derived ingredient. Enjoy Life products all state they are corn free even though most of them have xanthan gum in them. From what I've read on the corn forum all xanthan gum in the US is from corn.

I got sick from a cereal that was labeled corn free but had salt and I got blisters in my mouth, burning and tingling, headache, blurred vision, palipations, gas and acid reflux after eating it. The only ingredients were soghrum (sp?) flour and salt. There is also some relationship between soghrum and corn so not all soghrum is safe from what I've read....but the point is the cereal claimed to be corn-free.

Also not everyone with corn intolerance reacts to salt or xanthan gum so I'm thinking alot of companies dont acknowledge these as corn ingredients. The cereal thing was the only major reaction I've had since starting the corn-free diet. I had the same reaction 2 weeks ago from a cake mix that had baking powder and xanthan gum in it.

I've went through 2 cartons of corn free milk and I've had about a quart of ice cream and I havent gotten any of the symptoms I listed above. Its obviously not related to dairy...these reactions have got to be from corn.

Green12 Enthusiast
But what else can I do about these stupid bladder infections? I can't take any pills then...no cranberry, no grapefruit seed extract, no acidopholis, which all says free of all of the things I mentioned before! So frustrating!

I don't know if this is corn safe or not, but I wonder if you could have the straight cranberry juice, nothing else added. I used to have one tbsp. (2 times a day) mixed in water just as a system flusher.

danikali Enthusiast

I think you guys are right. The ingredients have things that you would think would be corn derived but it says corn free. But when we get symptoms back from using them, then there is something wrong with the picture.

I'm not going to take any supplements anymore. At least for a few weeks. And Julie, that's a good idea about the straight cranberry juice, where do you get that? What if I ate like a half a cup of actual cranberries once or twice a day? Do you think that would work?

Anyway, I looked through my food diary that I've been writing in since the begining of January, and it's crazy because I have never gone more than one day without something with corn in it. And everyday that I've had bad symptoms, I had something like almond milk, or rice milk, or a potato and fish with salt all over it, or some candy. It's so interesting.


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TCA Contributor

I'm starting to wonder if my daughter has some problems with corn. I'm going throught things and everything has corn!!!! Any ideas for a trial besides the obvious meat and veggies? I hav eto go out of town for a wedding this weekend, so I thought I might start Monday. She gets everything through me since she's nursing. She's on soooo many meds, though and she has to have them for reflux and heart issues. Any ideas?

danikali Enthusiast
I'm starting to wonder if my daughter has some problems with corn. I'm going throught things and everything has corn!!!! Any ideas for a trial besides the obvious meat and veggies? I hav eto go out of town for a wedding this weekend, so I thought I might start Monday. She gets everything through me since she's nursing. She's on soooo many meds, though and she has to have them for reflux and heart issues. Any ideas?

Well, I would say make sure that you wash the veggies reaaaaaaaalllly good and if you get them frozen, make sure there is nothing added to them, of course not even salt. I just went shopping yesterday to a small market and noticed all of their frozen veggies had at LEAST salt added to them. Some even with other ingredients! Also, what about fruit, with peels, like oranges, bananas, mangoes, kiwi, watermelon, etc. And applesauce that only has apples in the ingredients. No citric acid or vitaman C. And unsalted rice cakes, and potatoes. These are all of the things that I'm eating. These are the natural things that I'm sure about and feel best with for now. But Rachel is eating other things. She knows more than I do about this so I'm sure she'll give you some other ideas.

Rachel--24 Collaborator
I'm starting to wonder if my daughter has some problems with corn. I'm going throught things and everything has corn!!!! Any ideas for a trial besides the obvious meat and veggies? I hav eto go out of town for a wedding this weekend, so I thought I might start Monday. She gets everything through me since she's nursing. She's on soooo many meds, though and she has to have them for reflux and heart issues. Any ideas?

I would think it would be impossible to test the corn intolerance if shes on alot of meds. I would bet every one of them has corn in it. The last few months I wasnt getting any corn from my diet at all....except maybe from wax on vegetables. All of my symptoms were coming from my supplements and thyroid meds because once I stopped taking everything I started feeling better immediately. Thats why it was so difficult for me to figure out....I just wasnt thinking about what could be in my meds.

I'm not going to take any supplements anymore. At least for a few weeks. And Julie, that's a good idea about the straight cranberry juice, where do you get that? What if I ate like a half a cup of actual cranberries once or twice a day? Do you think that would work?

Dani, you could have a problem with cranberries, sulfites, salicylates or any number of things. Those are all things that would be in your supplement. Thats why its important to not take too many things while on the elimination diet....you'll get confused. I would avoid the supplements completely.....maybe try fresh cranberries instead and see if that works for you.

Rachel--24 Collaborator

I just want to say that corn is EVIL.

When I look back at my journals I'm highlighting everything that had corn derivatives in it. On the days that I had full blown reactions I had written "GLUTENED" on the page. Of course I had no idea how I got glutened.....just assumed that I did. Now I can see that on every one of those days everything I ate had some corn derived ingredient in it.

My symptoms were so bad on those days...mostly neurological. I always got chills so bad and my feet and hands would go numb and tingle. Sometimes my ears would buzz. I remember one time being asleep and totally out of it but my ear (that was lying on the pillow) was hurting and buzzing really bad...I was trying to move around to make it stop but everytime I put it back on the pillow I would get "zapped". Because I was so "out of it" I was thinking that there was a mouse or something in my pillow trying to get into my ear! :lol: This went on all night but at the time it was no laughing matter. All my joints were swollen and sore in the morning. My eyes would also get a sticky type film over them when I would get a reaction. No doctor could ever figure that one out....they'd never seen anything like it but my tears would be sticky...like syrup. Its amazing how one thing can cause so many disturbances to the brain, muscles, eyes...I actually dont think there was a single part of my body that wasnt affected by this. Every part of my head would hurt to even touch it and my whole body tingles and itches. My face and mouth burn and sting like crazy. Yup.....corn is definately glutens evil twin! Does anyone else get reactions like this?

TCA Contributor

I am very aware of how meds contain so much corn, I just don't know how to avoid it. I did call her allergist today and we have an appt. to get her tested for corn allergy next week. I figure that is a start. She reacts so violently to all formulas and the one common thing I see in all of them is corn of some form. Something just keeps telling me to pursue this, so I am. I don't know how on earth to avoid the corn in her meds since they're all liquids since she's a baby and they add corn syrup to make them taste better. I guess I'll wait until after the appointment next week and then see how things go. Did either of you test positive for a corn allergy?

Green12 Enthusiast
I am very aware of how meds contain so much corn, I just don't know how to avoid it.

TCA, have you checked out the Avoiding Corn forum at delphi? When I was doing my own research I came across several threads about infants with corn allergies, or suspected corn allergies, and there might be some helpful information and contacts for you.

Open Original Shared Link

I'm not going to take any supplements anymore. At least for a few weeks. And Julie, that's a good idea about the straight cranberry juice, where do you get that? What if I ate like a half a cup of actual cranberries once or twice a day? Do you think that would work?

dani, I used R.W Knudsen Just Cranberry Juice, found at most health food stores. I saw on one of the safe foods lists that Knudsen was an ok brand for one flavor of juice for sure, I don't remember what flavor, but it said to check labels for other flavors to see if they are safe. I'm looking at a bottle right now and the ingredients are just filtered water and cranberry juice concentrate. I don't know what the concentrate means but maybe it is safe.

I heard about boiling cranberries and then straining them to make your own juice, that might work too. They are very very tart, I don't know about eating them straight - but maybe that is a personal preference.

Hope this helps!

Green12 Enthusiast
I just want to say that corn is EVIL.

When I look back at my journals I'm highlighting everything that had corn derivatives in it. On the days that I had full blown reactions I had written "GLUTENED" on the page. Of course I had no idea how I got glutened.....just assumed that I did. Now I can see that on every one of those days everything I ate had some corn derived ingredient in it.

My symptoms were so bad on those days...mostly neurological. I always got chills so bad and my feet and hands would go numb and tingle. Sometimes my ears would buzz. I remember one time being asleep and totally out of it but my ear (that was lying on the pillow) was hurting and buzzing really bad...I was trying to move around to make it stop but everytime I put it back on the pillow I would get "zapped". Because I was so "out of it" I was thinking that there was a mouse or something in my pillow trying to get into my ear! :lol: This went on all night but at the time it was no laughing matter. All my joints were swollen and sore in the morning. My eyes would also get a sticky type film over them when I would get a reaction. No doctor could ever figure that one out....they'd never seen anything like it but my tears would be sticky...like syrup. Its amazing how one thing can cause so many disturbances to the brain, muscles, eyes...I actually dont think there was a single part of my body that wasnt affected by this. Every part of my head would hurt to even touch it and my whole body tingles and itches. My face and mouth burn and sting like crazy. Yup.....corn is definately glutens evil twin! Does anyone else get reactions like this?

Rachel, those are definitely some symptoms!

I have always gotten reactions from eating gluten-free foods that resembled getting glutened for me, but I just assumed that it was maybe something didn't agree with me, or I blamed the sugar because of the candida thing- or I thought I must just be allergic to EVERYTHING. Now I realize all of these products have many corn derivatives and maybe that has been the problem, that even though I was eating gluten free I was getting corned.

I get blisters in my mouth, feel sleepy almost immediately (sometimes I even fall right asleep like my system just shuts off), feel a slight pooling of mucous in my throat, and my brain gets a little foggy. But for the most part my symptoms are delayed, the next couple of days I get really really moody and irritable and I have temperature extremes, sometimes I am bone cold and my fingernails and toenails are blue, other times I have hot flashes and irregular sweating. I always get really really swollen all over the body from an enormous amount of fluid retention. The more I ingest the food the worse things get, more swelling, acne, itchy scalp and skin, digestive disturbances, dry mouth, my entire body will hurt and I can hardly breathe. But the worst symptom for me is angioedema, an anaphylactic type rash or skin outbreak that is similar to hives/blisters all over the body and they are so painful.

I guess it varies from individual to individual.

Rachel--24 Collaborator

Julie,

You also get alot of the same symptoms I get. I've had the fluid retention for 3 years now and before I restricted my diet it was really bad. All of my regular weight had been replaced by fluid and I'd wake up covered in lines and imprinted with whatever material I was wearing. Back then I was really messed up and had bruises all over and my hair was falling out. I actually get every symptom you listed...mouth blisters, irritabilty, brainfog, chills or hot flashes, and like you they get worse the more the foods are consumed.

I dont get the mucus in my throat or the rash though...my worst symptom is chemical sensitivities that get worse whenever I eat something wrong.

The fluid retention is crazy....I've actually felt myself fill up with fluid and I could see myself getting puffier. It happened once after mac & cheese and another time after pizza.

Maybe we have both been dealing with the same problem all this time.

I am very aware of how meds contain so much corn, I just don't know how to avoid it. I did call her allergist today and we have an appt. to get her tested for corn allergy next week. I figure that is a start. She reacts so violently to all formulas and the one common thing I see in all of them is corn of some form. Something just keeps telling me to pursue this, so I am. I don't know how on earth to avoid the corn in her meds since they're all liquids since she's a baby and they add corn syrup to make them taste better. I guess I'll wait until after the appointment next week and then see how things go. Did either of you test positive for a corn allergy?

I didnt test postitive for corn allergy last year when I was tested. I need to look at the results to make sure corn was on there....I'm sure it was though because it was all the main foods that were tested.

Thats great that she's being tested though....maybe it will give you some answers. I just dropped off my thyroid perscription at the compounding pharmacy tonight. My doctor wrote it for gluten free, corn free and dye free. If your daughter ends up allergic they can reformulate her meds to be free of corn or anything else.

TCA Contributor

Thanks for the link JulieM. I'm just starting to research this, so everything is helpful. BTW - why is salt a problem?

Rachel--24 Collaborator
Thanks for the link JulieM. I'm just starting to research this, so everything is helpful. BTW - why is salt a problem?

Iodized salt is derived from corn but sea salt is ok. I think this is one of the harder ones to remember and so many things contain salt.

kabowman Explorer

I found if I limit my corn (none) to JUST what is added to a few of the meds, I am OK as long as I don't overdo it and I keep those to a minimum. I think Tylenol has some corn starch but not really enough to bother me, most of my meds and vitamins are all corn free but check them all.

Almost anything canned, boxed, etc. has corn. Most gum has corn. It is the hardest to avoid...

miamia Rookie

Does anyone know which if any flour companies are safe if avoiding corn? Most that are dedicated to gluten free still manufacture corn.I know bobs does and i called arrowhead mills and although they say they clen their equipment there is the chance of cross contamination.

Miamia

I found if I limit my corn (none) to JUST what is added to a few of the meds, I am OK as long as I don't overdo it and I keep those to a minimum. I think Tylenol has some corn starch but not really enough to bother me, most of my meds and vitamins are all corn free but check them all.

Almost anything canned, boxed, etc. has corn. Most gum has corn. It is the hardest to avoid...

Nancym Enthusiast
My question is, even if my vitamans say 'corn free' could they still have corn in them?

Okay, haha this might sound like a stupid question, but I have a bladder infection and really want to get back to taking my cranberry pills regularly to avoid this, and it DOES say corn free, but I just want to be sure because if I'm as sure about this as I think I am, then I want to stay away from any possibilites.

Also, any other helpful info. that you may have on products/meds./etc. would be great, if you could just throw it out there.

Thanks!

According to the US labeling laws it shouldn't have any ingredient that isn't listed. At least, food won't. But things like OTC drugs might be a bit different. Some people, like the SCD peoe, think the Codex rules apply, but I don't believe they do in the US. Its the FDA rules and they're pretty specific. Of course, look how McDonalds didn't reveal gluten in their fries but then again restaurants don't have the same rules as manufacturers.

kabowman Explorer

I forgot - I can't remember where I heard this, maybe here, but - wax paper can have a light dusting of corn starch. I had, had to stop using the wax paper because every time I used it to make something, I got sick and didn't know why. Once I stopped, I was OK with those foods again. Then I heard about the corn part and it all makes sense now.

Green12 Enthusiast
According to the US labeling laws it shouldn't have any ingredient that isn't listed. At least, food won't.

Unfortunately Nancym, people with corn allergies have found that there are a lot of corn/corn derived ingredients in food items that aren't regulated by fair labeling standards. For example, corn oil is used as a carrier for the vitamins contained in enriched milk and it doesn't have to be listed. Xanthum gum is derived from corn/or manufactured with corn and yet the label might still read "Corn Free". Corn starch is used to dust the inside of food packaging with no mention.

It's a frustrating, scary, troublesome situation, for people trying to be corn free as well as gluten free. We definitely need more honesty in labeling from manufacturers and companies. And, we need the allergy industry to recognize this as a problem.

Rachel--24 Collaborator
Does anyone know which if any flour companies are safe if avoiding corn? Most that are dedicated to gluten free still manufacture corn.I know bobs does and i called arrowhead mills and although they say they clen their equipment there is the chance of cross contamination.

Miamia

I think I'd be worried about Bob's the most. From what I read they dont clean after corn runs. Unfortunately I've only used Bob's all this time but am now going to switch. I've seen several posts on the corn forum mentioning contamination from Bob's but havent seen any other flours mentioned. I'm sure the possibility is there w/ all brands but especially those who dont clean in between runs. I'm going to order flour off the allergen site.

danikali Enthusiast

Well, today I didn't take any pills, and the headache is gone again. I'm feeling so good, I can't believe it. I am not retaining ANY water for the first time in almost 2 months! I have energy, I have been eating all of the fruits/veggies that I want, and any amount, and I still have no gas or bloating. No heartburn, no backburn, the dry skin and rashes that I had on my face, arms and fingers are gone! My skin is looking really good. And for the first time since I first got sick with everything, my knees don't hurt AT ALLLLLLL when I sit for a long time, not even if I cross them! I just feel all around great! This is amazing! I pray to God that this is not short term.

Rachel, I too went through my food journal and highlighted all of the things with corn in them and it was all on the days that I also thought I was glutened, or wondering what other kind of food allergy I have. I am really begining to think that everyone should be just as informed about corn as they are gluten. Considering it's in everything! Rachel, I'm SOOOOO HAPPY you posted about your problem with corn!

miamia Rookie

It is great ot hear that you are also benifitting from cutting corn out. What have you guys been eating? I am trying to make sure I am getting all the corn out of my diet. I still am trying to figure out which flours are alright. ANy useful suggestions on flours or foods would be greatly appreciated.

Maimia

Well, today I didn't take any pills, and the headache is gone again. I'm feeling so good, I can't believe it. I am not retaining ANY water for the first time in almost 2 months! I have energy, I have been eating all of the fruits/veggies that I want, and any amount, and I still have no gas or bloating. No heartburn, no backburn, the dry skin and rashes that I had on my face, arms and fingers are gone! My skin is looking really good. And for the first time since I first got sick with everything, my knees don't hurt AT ALLLLLLL when I sit for a long time, not even if I cross them! I just feel all around great! This is amazing! I pray to God that this is not short term.

Rachel, I too went through my food journal and highlighted all of the things with corn in them and it was all on the days that I also thought I was glutened, or wondering what other kind of food allergy I have. I am really begining to think that everyone should be just as informed about corn as they are gluten. Considering it's in everything! Rachel, I'm SOOOOO HAPPY you posted about your problem with corn!

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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