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What Do You All Think About Idea That All Grains Must Go For Many To Heal?

slee11211

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slee11211 Apprentice
slee11211
Posted

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

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ravenwoodglass Mentor
ravenwoodglass
Posted

While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.

slee11211 Apprentice
slee11211
Posted
  • Author

While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.

So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)

1desperateladysaved Proficient
1desperateladysaved
Posted

I did classic gluten free for two months. I was still having alot of dizzy/fatigue symptoms. I went grain free. I am still pulling out of withdrawl after two months. But I feel better. I have energy and am not tired without a good reason to be.

Now, I am seeing some things that I am reacting to. The smell of rice cooking caused my neck glands to swell. Crumbs of gluten bread caused a rash.

I needed to be grain free, for my body to heal-and maybe forever.

Jestgar Rising Star
Jestgar
Posted

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains,

I'm curious how this was tested.

Gemini Experienced
Gemini
Posted

So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)

I think this whole idea that you have to give up all grains to heal is pure horse-pucky, for most Celiacs. I was the same as you....my numbers were off the charts and I refused the biopsy as I was so very, very ill at the time of diagnosis. Actually, I have as little to do with doctors as humanly possible and I have healed fine. How do I know this? I have 3 other autoimmune conditions from long term, undiagnosed Celiac and they are doing a lot better also since diagnosis and my following a strict gluten-free diet. All of my inflammatory markers are coming down also, with each blood work I have done so if that isn't enough to convince me, I should hang it up. Unless I'm bleeding from somewhere, no one is scoping me. The doctors already made enough mistakes with me and I don't trust them.

Not all Celiacs are alike and each person has to figure out which is the best route to follow when trying to heal. I am happy you feel better but you might be able to add some grains back in at a later date....if you want to. Just make sure your diet is as balanced as possible because you can develop nutritional deficiencies from cutting out all grains.

benXX Rookie
benXX
Posted

Trying to find a solution for my problems, I started on SCD. But being dairy intolerant, it wasn't the right diet for me. From there I went onto anti-Candida Diet and ended up on Paleo. I must say, I have never felt so good as on the Paleo diet. It was absolutely great.

However, after 4 months, I had to stop the Paleo diet, to go on an horrible 2 month gluten-challenge for my endo.

I truly believe the Paleo diet is the best way to allow your intestines to heal.

No starch/dairy/sugar/legumes/alcohol, no ready made stuff full of chemicals, just plain whole food.

Only problem I had with the Paleo diet was the weight loss. I'm waiting to gain some weight, in order to be able to go on Paleo again.

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ravenwoodglass Mentor
ravenwoodglass
Posted

So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)

I didn't have a biopsy until five years after diagnosis and I had healed well by then. My doctor diagnosed me without a biopsy because he demanded a gluten challenge which came close to killing me. Literally. The day of the biopsy I was laying on the bathroom floor bleeding.

If grain free is working well for you then keep it up. You can always try adding some of the gluten-free grains in after you have been doing well for a few months if you miss them.

IrishHeart Veteran
IrishHeart
Posted

I'm curious how this was tested.

I am, too. You said "a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that"

What test was performed?

deb445 Rookie
deb445
Posted

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac...

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this.

Thanks for weighing in....

I'm curious too. It concerns me that it is taking a long ttime for some people to heal. This makes me wonder if there isn't something in addition to the usual "wheat, barley, rye and sometimes oats" elimination that has to take place.

As a trial, I have eliminated corn - this pains me more than eliminating wheat, to be honest. I miss a bowl of popcorn more than bread! And yet, I feel even better! More clear minded. Less panic when dealing with the daily grind. Far more patient, when I didn't think it was even necessary. Can it get even better? I'm willing to try cutting out more. One thing at a time - the skeptic in me is open minded. :D

Did your acupuncturist use muscle testing for other grains? Our energy system is quite complex, isn't it.

GFinDC Veteran
GFinDC
Posted

I went grain-free for a while. It didn't seem to make any real difference for me except for rice. White rice did a number on me, but that is probably a sugar related problem not due to the grain aspect so much, but the fast acting carbs. Grains are often used in baked goods and can have blood sugar affects due to the glycemic index being high. So you may get relief form going grain free but it may be a blood sugar thing instead of a grain thing. Just mentioning it so you keep an open mind about it.

I don't do well with flax seeds though, or any unground seed shell like pumpkin seeds. Tears me up it does.

The other thing with brown rice is they say it has some arsenic in it. Mostly in the hull. So that is another possible impact from a grain. There was a story about that not long ago basically warning people (including celiacs) to beware of eating too much brown rice, due to the arsenic levels.

The other bad thing about grain is it can get stuck in between your teeth, and that is very unsightly. And if it is out in a field it does attract crows. But you can make those seed grains paintings with it, so it's not all bad.

woodnewt Rookie
woodnewt
Posted

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

Currently the research says celiac gluten intolerance is related specifically to certain grains including wheat, rye, barley, spelt (and a few others), but not to other grains such as corn, rice, or millet. As far as I know, there is no scientific research pinpointing other grains as culprit in celiac disease gluten intolerance.

However, I think recovery and tolerance of non-gluten grains likely depends on a person's overall state of health. There can be a lot more than just the issue of gluten intolerance when someone has celiac disease - there can be concomitant issues of microbial dysbiosis or other inflammatory or allergic conditions causing additional digestive problems that may interfere with healing. Any chronic inflammation will interfere with healing. Period. It is a very complex issue involving food biochemistry, immunology and microbiology and will certainly not be clarified until much more research is done, especially in the field of bioinformatics.

T.H. Community Regular
T.H.
Posted

I've come to think that we each have our own, individual optimal diets. Whatever strengths and weaknesses our genetics gifted us with, whatever injuries we've sustained in life, whatever we're exposed to in our environments - it's all going to have an effect on what diet does best with us, IMO.

The gluten free diet is a clear one for all us Celiacs, but the grain free one, not as much.

However, we're all competent adults, and usually ones who pay attention to our health because we've had to do so. It seems to me that some people do just fine with grains, some people are knocked flat by 'em, and they are typically aware enough of their own bodies to tell the difference, you know?

Whether it's the grains themselves, or GMO issues, or pesticides, or whatever, if it works for some people to avoid it, more power to 'em. God knows I've struggled enough to figure out my ridiculous body that I'm always happy to support anyone who's found the answer to their own health issues. :D

As for myself, if I eat grains, I'm sick. My kids' health issues are much better when they have a low-to-no grain diet. Previously, when eating grains, I had vitamin deficiencies and other medical problems that wouldn't resolve until I made some major dietary changes, including going grain free.

IrishHeart Veteran
IrishHeart
Posted

T H and WOODNEWT

Your thoughts certainly sum up the "wild adventures of being a celiac". :)

Individuals have different recovery times and different "guts" and

health situations and we need to choose what works best for our own bodies.

cahill Collaborator
cahill
Posted

I am basically grain free ,except rice and occasionally corn.

I was considering switching to brown rice until I read this :P

The other bad thing about grain is it can get stuck in between your teeth, and that is very unsightly. And if it is out in a field it does attract crows. But you can make those seed grains paintings with it, so it's not all bad.

Honestly I dont know anymore , some times I feel like food is trying to kill me :ph34r:

My PCP wants me to limit my carbs (possible insulin resistance ) for the next 3 months . So depending on my labs I may go totally grain free.

GFinDC Veteran
GFinDC
Posted

I am basically grain free ,except rice and occasionally corn.

I was considering switching to brown rice until I read this :P

Honestly I dont know anymore , some times I feel like food is trying to kill me :ph34r:

My PCP wants me to limit my carbs (possible insulin resistance ) for the next 3 months . So depending on my labs I may go totally grain free.

Ha Ha Chili, there are so many possible problems with grains! :D Well, anyway, here is a link to a short news story about the brown rice and arsenic link. There are lots of hits on it you search on brown rice and arsenic.

Open Original Shared Link

Brown rice -- and anything made with brown rice syrup --could be a source of potentially toxic arsenic, according to research by scientists at Open Original Shared Link

...

The research team found that dangerous amounts of arsenic were in organic powdered toddler formula whose top ingredient was brown rice syrup, Open Original Shared Link. The formula contained six times more arsenic than the Environmental Protection Agency considers safe for the water supply, they reported.

...

IrishHeart Veteran
IrishHeart
Posted

I have to say that I read that report when it came out and I am a bit skeptical.

The report uses words like "may contain" and "can".

There was no follow up and I did not see a sudden recall of brown rice products or infant formulas.

So, how can we really know? :unsure:

rustycat Rookie
rustycat
Posted

Count me in as another one who has had to give up all grains. It's disappointing, to say the least, but I can't seem to keep my energy levels up or my hormones in order while eating any grains. I've been paleo for almost a month and my emotions are also the most stable they have ever been in my life. Who knew?

dreacakes Rookie
dreacakes
Posted

Yes! Going grain free is a must, IMO.

I didn't start to see any significant improvement until I went on a paleo diet. It was so quick and so dramatic when I did. My brain fog was GONE, and my muscle spasms and joint pain soon followed.

This supplement was also helpful: Open Original Shared Link

And recently I just started taking cod liver oil and liquid chlorophyll, which has helped even more.

After being on the diet for about a year, I've been able to "cheat" some of the time and have some wine, sugar, goat cheese (but never cow!) However, I am never going to touch grains again. When I eat them I feel foggy-brained, gassy, and my body starts to hurt again.

Best of luck to you, I hope the diet helps!

Marie1976 Enthusiast
Marie1976
Posted

This thread just makes me want to cry. I am vegan already (no meat, no dairy, no eggs). And I'm thinking of cutting out soy to see if it's bothering me.

Cutting out all grains?? No rice? No rice noodles? No quinoa or quinoa noodles? No gluten free breads or gluten free waffles or gluten free baked goods? No gluten free pizza?

I would be down to fruits, vegetables, and well, that's it. Fruits and vegetables. And beans. I admit I can see how this would probably eliminate any reactions. But I would feel deprived and hungry.

Anyone else tried this diet? Fruits, veggies, beans only?

Gemini Experienced
Gemini
Posted

This thread just makes me want to cry. I am vegan already (no meat, no dairy, no eggs). And I'm thinking of cutting out soy to see if it's bothering me.

Cutting out all grains?? No rice? No rice noodles? No quinoa or quinoa noodles? No gluten free breads or gluten free waffles or gluten free baked goods? No gluten free pizza?

I would be down to fruits, vegetables, and well, that's it. Fruits and vegetables. And beans. I admit I can see how this would probably eliminate any reactions. But I would feel deprived and hungry.

Anyone else tried this diet? Fruits, veggies, beans only?

Unless you have an added allergy to a particular grain or have noticed reactions after eating grains, there is no need to give up all grains to heal. It is most definitely NOT a requirement to healing and anyone who tells you that is wrong. Some people need to do so but you can have gluten-free pizza or bread when first diagnosed and have it not be a problem. I think the worst thing one can do is obsess about that to the point where they feel deprived. Relax and eat what you want in your diet that fits your particular needs. If you try something new and have a problem, then cut it out and try again down the road. You'll be fine...really! :D

AVR1962 Collaborator
AVR1962
Posted

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

I am grain-free......had been gluten-free a year and still having random issues and was tired of being sick.....it was like their was a fire in my body and one part of my body was being attacked at a time. I knew my diet was clean, kitchen clean, I wasn't eating out and I took all the steps for CC at home. I also knew I was sensative to sugars so I went 8 weeks without sugar and grains to get my body a chance to heal and it worked. I felt amazingly better.

Giving up gluten was the hard one for me but giving up grains and sugar really was not hard. I am now almost 4 months into this. I will allow an occasional french fry and I will eat tortilla chips with salsa if I am out so if I take in any grains now, it is in very limited amounts and I am doing very well.

slee11211 Apprentice
slee11211
Posted
  • Author

I'm curious how this was tested.

have a talented acupuncturist who adapted NAOT to her work (she has had incredible success curing food allergies)....uses muscle test for sensitivity. More than anything, I wanted to know how much worse it was than my allergy panel was showing (what about all the "pre allergy" sensitivities if i had THAT many allergies? I had a ton). Turned out, I was sensitive to every single grain she could test, so taking them all out made sense for me.

To everyone else - I probably should have indicated that this is being looked into when gluten-free diet does NOT work for people. I think there is a camp of believers that feel that all Celiacs should probably be off all grains, but I think they are jumping the gun ahead of the hard research (which is slow in coming, as we all know). Definitely some of us are finding this to be true, but if others are healing on grains, more power to them! (have an Udi's muffin for me!!) For now, I think it's something to be aware of, maybe look into if your symptoms are not alleviating and you think you could do it....but I don't think every Celiac should stop eating grains! (although, keep an open mind of you are not symptom free yet - if you would have told me I'd be doing this one year ago I would have broken a rib laughing so hard - and I didn't have all the regular GI symptoms that are easy to track, and Celiac went undiagnosed into my 40's with all the autoimmune stuff that's more elusive and hard to stop, and I am feeling a difference finally)

And for those who want to try, I've found no information that implies that grains are necessary to the human body (humans systems evolved NOT eating them, so it could be the predominance of processed and engineered grains in our diet since young age that could be the issue). So for those who feel they need to cut them, but worry about idea that they are hurting their health - the research I am currently finding would indicate that the human liver provides MORE than enough glucose to cover the daily needs of the brain...and the introduction of a LOT more in a grain heavy diet causes such an insulin reaction in the body, there is just as big an argument that it is bad for you. But we do tend to hear what we want to hear, so there may be other studies debunking this out there that I'm overlooking. ha.

Also interesting, is that I was only a "healthy grain" eater for the last 10 yrs or more....and that's when celiac kicked into high gear for me. So it wasn't just going from Wonder bread diet to Paleo...I switched from an already incredibly healthy and rounded diet with healthy meats, whole grains, fruits and veg, and felt a difference right away, so go figure.

slee11211 Apprentice
slee11211
Posted
  • Author

I am grain-free......had been gluten-free a year and still having random issues and was tired of being sick.....it was like their was a fire in my body and one part of my body was being attacked at a time. I knew my diet was clean, kitchen clean, I wasn't eating out and I took all the steps for CC at home. I also knew I was sensative to sugars so I went 8 weeks without sugar and grains to get my body a chance to heal and it worked. I felt amazingly better.

Giving up gluten was the hard one for me but giving up grains and sugar really was not hard. I am now almost 4 months into this. I will allow an occasional french fry and I will eat tortilla chips with salsa if I am out so if I take in any grains now, it is in very limited amounts and I am doing very well.

This is so good to hear!! I'm so glad you've had that kind of luck!

I've been at this only 2 months, but can feel already that this was the correct road, and I started down it with intention of it being for the rest of my life - not a diet, not a fad. I've not been able to give up the sugar completely (and it's only hidden sugar in stuff like coconut milk and dark chocolate)...but am working on that, and was hoping I could kind of sidestep the strictness there (time will tell if that has to go too). What you just wrote gives me so much encouragement to look forward to a time when it doesn't need to be so strict!

But yes, strangely, the first 9 month of being gluten free were MUCH more difficult to do that Paleo....it was like eating was all about what you "couldn't" have. What "replacements" to make for "IT." I started to get depressed, even though some symptoms were lessening. Now, I'm enjoying food so much more...it's all about this amazing quality, and really FEEDING my body. Nothing that goes in should bring anything but health and joy - I think I cook more like a chef now, buy everything fresh and local and look for new ways to enjoy and prepare it. I have an indulgent treat (macaroons or dark choc) when I need so I don't feel like a total caveman... That's a huge change from the sugar and carb loving human I used to be. Maybe I'm enjoying some of those benefits that are supposed to come with age? ha. Hope so.

Thanks for the post!

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      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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