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Eating Disorder Brought On By Gluten Intolerance?


kdonov2

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kdonov2 Contributor

hi im new to the board,

i hope this post is in the right place and is not innapropriate in any way. well, to provide a bit of background, i should mention that i am probably not one of the severely afflicted gluten intolerant sufferers, but my major symptom is extreme bloating and abdominal swelling. i didnt realize that i was gluten intolerant until fairly recently. before then, i had thought i was just fat and decided that i wanted to try diet and exercise. when i disovered that my seudo pregnant swelling went down after only eating fruits and vegetables but returned when eating outside of that diet, i went a bit overboard and was quickly sucked into an eating disorder. it may seem very trivial and vain to those who do not understand the psychology of eating disorders, but its a very difficult issue to deal with and recover from. currently, i am finding it hard to cope with a "healthy" gluten free diet because i ususally end up slipping back into old behaviors. i cant help but feel that my gluten sensitivity contributed to my problems and im wondering if there is anyone else out there who may share any similar issues.

any comments would be greatly appreciated, thanks.


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mommida Enthusiast

I did see some statements that children with Celiac Disease are more likely to develop an eating disorder. I do not have time to reseaerch out links to provide them. I think every time a person associates pain or discomfort with eating they will have to overcome fear of eating.

Eating disorders are very hard to overcome. I hope you are seeking counseling and have a support system for support. :)

A person is worthy of being loved at any size. ;)

samcarter Contributor

I had a compulsive eating disorder that began in childhood, when I was very young. I think gluten intolerance creates, oddly, a craving for foods because we're not getting the proper nutrition because of the malabsorption issues. And, yes, I had a bloated stomach all throughout childhood. My mom told me that all the women in our family had that "pouch" (lower abdomen distention) and to get used to it. When my disorder turned into bulimia, I remember it was always, always, wheat-based foods that I would binge and purge with. Makes me wonder if the purging was just getting sick from the gluten sometimes.

I don't think any one thing causes an eating disorder. I do think that different variables combine to create an environment and an individual that is vulnerable to the illness.

I do know that now that I know I have celiac, I have absolutely no desire to enter into those destructive patterns again. Partly it is because i can't binge on gluten free foods! I don't get the same urge to just keep eating as I used to. As your body heals, you will get more nutrients from the healthy foods you're eating. Just make sure you're not seeking out gluten-free versions of your "trigger foods", the ones that trigger those destructive behaviors. I made that mistake, seeking out the gluten free donuts I'd heard so much about. Not a good idea. I try to eat clean, eggs, meat, veggies, fruit.

kdonov2 Contributor

thank you for your responses.

it is nice to hear from other gluten intolerant people rather than the "professionals" i dealt with who refused to acknowledge my gluten sensitivity. they believed my fear of gluten was an attempt at avoiding food. while in the hospital, i clearly mentioned my gluten intolerance and vegetarianism, but they told me that i should wait until discharge to make that decision, and they force fed me both meat and tons of glutenous food. there were like, 9 grains incorporated into my daily meal plan and i was in constant agony. all they would do for me is give me tums. so glad to be out

Chrissyb Enthusiast

I can totally relate to replaceing your "trigger food" with non gluten "trigger foods". I find myself doing that still and I have been at this for a year now. I will make a big pan of gluten free browines and my son with eat some but I will eat most of them or cookies or what ever the sweet of the day is. That is what I use to do before I was gluten free and I overate a lot, so the gluten free diet doesn't really cause an eating disorder in my humble opinion. I had problems before and it carried over but not as bad because I am learning to dealing with why I was overeating in the first place and to me that is the key.

I agree about finding someone to talk to about what the root cause, the eating disorder is just a symptom. I am so sorry for the way you were treated in the hospital, sometime I really wonder about the medical profession, makes me think twice about going to the doctor.

Takala Enthusiast

I suspect a lot of eating disorders have root cause in gluten intolerance, because of the vitamin and mineral malabsorption issues, but I'm not sure how to research it.

The person with a gluten intolerant metabolism may not be able to process grain carbohydrates the way a normal person can anyway, and if they are attempting to eat the gross amount of grain servings recommended (shudder) with the gluten free substitutes, they are frequently going to be as sick as dogs. I say this from reading here on this and other forums for years, besides my own experiences. Especially the commercially made stuff that is made out of the rice and tapioca heavy starches- too much white carbs. You may also have a secondary problem with one of the gluten free alternative grains or starches that is causing you to bloat, or you could be accidently using something that is cross contaminated, which is the pits.

I can't do this diet as a vegetarian, because it would then play havoc with my blood sugar, and I know I get fairly annoyed with people who insist that everybody in the world could and should go vegetarian to "improve" their health. Of course, most of these same people haven't got a clue that I went completely grainless for quite awhile without much difficulty, and will also tell you that that sort of diet will kill you. If that was so, at some point I should have at least dropped down to what is considered a normal weight for my height according to those wretched BMI charts. (not fat, but never thin. "chunky" )

This doesn't mean other people can't eat gluten free and vegetarian, IF THEY SUPPLEMENT PROPERLY AND MEAL PLAN CAREFULLY, but if they are having difficulties with sticking with it, maybe they should review with themselves if it's really so bad if they tried adding in eggs, non lactose dairy, a bit of grilled fish. You've been told this is brain chemistry, probably, that causes this (I hope, because it's not just a learned behavior). Feed the brain.

You will also need to supplement with a good gluten free multivitamin, a B complex, calcium, and magnesium, which will help cut down dramatically on cravings.

When I had day surgery last summer I packed the go-to gluten free travel bag of food in the car just in case, and made my spouse swear that he would NOT let them give me anything from the hospital, just in case I was not released quickly. The surgical doctors and nurses and understood it, but I have been offered crackers before, after tests (say, didn't you ask me what I was allergic to before we started? :blink: ) and I didn't know if I'd be coherent enough in a post anesthesia state to tell them what to do with it. Hospitals mess up everybody's food.

Kaycee Collaborator

I used to have problems with eating before. In the fact that I would eat too much. Like Chrissy says, I would cook, or buy something really nice before going gluten-free, or even just plain ordinary everyday food, and I would eat all or most of the product myself. I just couldn't help myself, I have always been overweight and hungry.

Going gluten free, through a coeliac diagnosis, has changed things, in that I am not always hungry, so the everyday foods aren't eaten to excess. But I still have the capacity to eat a lot of unhealthy things in one sitting. If I bought chocolate, I would eat most, same with bags of crisps, I would eat the lot. Thankfully gluten free bread is not the nicest of things, or else I would be living off it, morning noon and night. I have thought I could manage a little bit of chocolate etc here and there, but invariably I would buy something nice and end up eating most, even with the best of intentions. That is the part that hasn't changed. I now try not to buy myself anything like chocolate that I can eat. It makes it so much easier, as I find I don't overindulge in the good foods anymore.

I can understand how you can be scared of falling into old gluten eating habits. That is what my nightmares are made of. I know to start with I didn't think my problems with gluten were too bad, and that I had to be strong and not fall into a habit of eating a bit of gluten here and there. I realized at the time that if I didn't give the gluten-free diet 100%, it would go by the wayside like all my other diets. I knew myself well enough to know that I couldn't stick to a weight loss diet even if my health depended on it, so I wasn't too sure if I could stick to a gluten-free diet. I completely surprised myself and gave it near enough to 100% even thought I was in quite a state the first few weeks. But having removed gluten and having had a few not too nice experiences eating gluten by mistake, I'm not tempted anymore. Thankfully gluten make me puke (vomit) so I do not have to worry about myself taking up gluten again. I wish chocolate would make me sick.

So you are scared that eating a more varied diet that gluten might slip back into your diet and cause not too many problems, but you just might be surprised that if you accidentally ate gluten it would make you sicker than you thought, and like me, sicker than it has ever made me prior to diagnosis. Hopefully when you venture out into new foods, you will not be tempted to eat gluten, as hard as it maybe, but we have to put our health first.

Good luck

Cathy


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samcarter Contributor
I can't do this diet as a vegetarian, because it would then play havoc with my blood sugar, and I know I get fairly annoyed with people who insist that everybody in the world could and should go vegetarian to "improve" their health. Of course, most of these same people haven't got a clue that I went completely grainless for quite awhile without much difficulty, and will also tell you that that sort of diet will kill you. If that was so, at some point I should have at least dropped down to what is considered a normal weight for my height according to those wretched BMI charts. (not fat, but never thin. "chunky" )

This doesn't mean other people can't eat gluten free and vegetarian, IF THEY SUPPLEMENT PROPERLY AND MEAL PLAN CAREFULLY, but if they are having difficulties with sticking with it, maybe they should review with themselves if it's really so bad if they tried adding in eggs, non lactose dairy, a bit of grilled fish. You've been told this is brain chemistry, probably, that causes this (I hope, because it's not just a learned behavior). Feed the brain.

You will also need to supplement with a good gluten free multivitamin, a B complex, calcium, and magnesium, which will help cut down dramatically on cravings.

I also can't do this diet as a vegetarian. I'm sensitive to dairy, so if i took out meat, I would have gluten free grains, vegetables and fruits. Oh, and nuts and seeds, I suppose. I have found articles about low carnitine levels in celiac patients (carnitine is a substance mostly found in red meat) reflect my own medical history perfectly. I feel much healthier and stronger when I incorporate meats and eggs into my diet (not chicken, but red meat, like buffalo and beef).

one more mile Contributor

progress not perfection

For me the answer is yes the gluten intolerance did add to my eating problems. I am a compulsive over eater who at times slipped into not eating much for a few weeks. I never really figured it out but when it gets hot the thought of food makes me ill. I thought of it as losing weight, my kid thought I was being anorexic. ( granted I was still fat just not eating solids) . I also could eat a whole bag of pretzels or cookies cause heck I felt hungry and bloated after the first few anyway. All my signals were messed up for years. I did not understand hungry or full. The more I ate the hungrier I felt.

I dieted and bloated up. I ate and got skinner. Nothing really made sense. I often told people that what I ate had nothing to do with what I weighed. I was 42 before I learned that people really should, and could poo everyday.

How could I not have messed up eating habits? It is a whole new world for me now.

so if you eat unhealthy for three days and healthy for 4 you are still ahead of where you were before.

Currently I am losing about a pound a month. But it is not my goal. I am at that age were my numbers need to be in line so I do not have a hart attack.

I had to sit down and make a few choices

1) food must be gluten free

2) cut back or leave out on soy, rice, nutra sweet (My body has trouble with them)

3) cut back on the sugar

4) eat something fresh.

That is a massive improvement from last July. My body is slowly changing to want better foods and less foods.

Yesterday I actually stopped at a grocery store for a banana. That sure beats what I once stopped for. lol

I am also one of those people that needs meat. Maybe one day that will change. but for now I need a small soap bar sized amount of meat. twice a day. Not a pound in one sitting.

Some people are lucky they just snap to one day and make massive changes. I have never been like that.

Slow but steady works for me.

one more mile

  • 2 months later...
glutenfreepeace Newbie

I totally agree that lot of eating disorders have root cause in gluten intolerance. I think a lot of gluten intolerant folks have not only malabsorption issues, but other biological factors that cause them to have a pre-disposition for not only eating disorders but also other psychological issues. The psychological issues aren't due to moral defects, but are largely physiological. There is definitely a strong gut-brain connection. This is why the medical community needs to get educated about how to properly treat gluten intolerance and eating disorders, so many folks with one of these issues (or who have both) have just been written off by docs as 'crazy' and told to go see a therapist (this happened to me). Although I think once diagnosed with gluten intolerance therapy can of course help resolve the lingering eating disorder issues.

I struggled with binging for years, and worked hard to resolve it. I was binge free for awhile before I got off gluten, only to start binging on gluten free foods after a long period of abstinence! It has taken me a lot of trial and error to put together my own toolbox of proper diet, lifestyle, stress relief techniques, etc. to resolve the eating disorder issues post gluten free diet.

I am actually writing a book on the relationship between eating disorders and gluten addiction because it is such a fascinating and important issue.

Hope that helps! Progress not perfection, could not agree more.

Daniela

  • 9 months later...
MaryJo33 Newbie

hi im new to the board,

i hope this post is in the right place and is not innapropriate in any way. well, to provide a bit of background, i should mention that i am probably not one of the severely afflicted gluten intolerant sufferers, but my major symptom is extreme bloating and abdominal swelling. i didnt realize that i was gluten intolerant until fairly recently. before then, i had thought i was just fat and decided that i wanted to try diet and exercise. when i disovered that my seudo pregnant swelling went down after only eating fruits and vegetables but returned when eating outside of that diet, i went a bit overboard and was quickly sucked into an eating disorder. it may seem very trivial and vain to those who do not understand the psychology of eating disorders, but its a very difficult issue to deal with and recover from. currently, i am finding it hard to cope with a "healthy" gluten free diet because i ususally end up slipping back into old behaviors. i cant help but feel that my gluten sensitivity contributed to my problems and im wondering if there is anyone else out there who may share any similar issues.

any comments would be greatly appreciated, thanks.

Hello there,

I had an eating disorder from age 15 to age 40 or so. I never knew of the link between eating disorders and gluten intollerance until recently. While I consider myself to not have the behaviors associated with an eating disorder, the brain got that I got when I started to eat was aweful. I have struggled with confusion since eating almost regularly for the past four years. Just a few weeks ago I started an elimination diet and in less than two weeks I am thinking so much clearer, losing a few poinds, have no belly bloat and have no itchy skin! Initially I had a yeast infection when I started the elimination diet but now I feel great. In the last two days I started to hava a little bread because it is required during this elimination diet I'm doing and I started to feel that pit in my throat...the one that used to trigger a binge and purge. So I definately think there's a link between gluten intollerance and eating disorders. The woman I am doing the cleanse with says that she believes eating disorders are simply severe gluten intollerance. It makes sense. You need to surround yourself with healthy nourishing options. You might want to think about what purpose the bread is fulfilling in your life. Once you figure out that you can begin to deconstruct why you have to eat the breads....

Good luck and keep in touch.

mary jo briggs

sb2178 Enthusiast

I don't have a full-on eating disorder, but have had some bizarre disordered eating habits at various points. And, honestly, I'm pretty sure it's always been when I've been really deficient, particularly in minerals. Just diagnosed, so not sure how new habits will affect eating habits.

BUT, historically, when I've been faithfully supplementing and eating more rice-based diets, no weird eating behaviors. Eating good bread, or not supplementing, and I down cheese sandwiches, nutella, Clif bars, and half the contents of the fridge a couple times a week. (But no weight gain even without purging or compulsive exercise... how about that?)

tictax707 Apprentice

I think this is a very interesting thread and I am glad to hear other's opinions on this issue. Being diagnosed with celiac & colitis has definitely given me food "issues," that I did not have before, and maybe it IS a disorder. It's odd that I was not ever deficient in anything, but because of the havoc that gluten would have on my system, my default happy spot was to have an empty tummy, and that remains to this day.

When my intestines start to revolt from either gluten or a colitis trigger, I FEAR food with a passion - all of it, even the foods that are normally ok for me to eat. It's really hard to get me to eat during those times. :ph34r: I can see the connection to anorexia, but it only lasts as long as my intestines are mad. On the other hand, there is a LOT of unaccessed anger and frustration with this disease, so sometimes when I am healthy and I find a yummy gluten free option, I can also eat a LOT of it in one sitting. The next day my body will feel like crap from all the junk, but that still isn't enough to stop me sometimes. And THAT freaks me out to no end. So yeah, I am a little all over the place.

Anyway - thanks for listening and letting me get that out. It is a constant process, and ultimately I am working on finding balance to help combat both my extremes...

  • 3 months later...
mimi1231 Newbie

Hay anyone read this article? "The interaction between eating disorders and celiac disease: an exploration of 10 cases" I was just tested for Celiac today after going to literally 6 doctors trying to figure out what is wrong with me. When he mentioned possibly Celiacs I began to research it and didn't realize it's link with Bulimia which I have had for 10 years. I'm very curious to see what this article says but it costs $35! I guess what I would most like to know is if the Bulimia ends would the Celiacs disappear if will I have it (if I do) for the rest of my life regardless?

psawyer Proficient

Hay anyone read this article? "The interaction between eating disorders and celiac disease: an exploration of 10 cases" I was just tested for Celiac today after going to literally 6 doctors trying to figure out what is wrong with me. When he mentioned possibly Celiacs I began to research it and didn't realize it's link with Bulimia which I have had for 10 years. I'm very curious to see what this article says but it costs $35! I guess what I would most like to know is if the Bulimia ends would the Celiacs disappear if will I have it (if I do) for the rest of my life regardless?

Disclaimer: I have not read the article.

Celiac Disease is a life-long condition. It can not be outgrown and does not go away. Symptoms can go into remission, but damage to the body still occurs when gluten is ingested. Celiac can cause may symptoms, Bulimia may be a respose to the gastric discomfort that results from eating gluten. It upsets your tummy, so you decide to barf it out.

Skylark Collaborator

Hay anyone read this article? "The interaction between eating disorders and celiac disease: an exploration of 10 cases" I was just tested for Celiac today after going to literally 6 doctors trying to figure out what is wrong with me. When he mentioned possibly Celiacs I began to research it and didn't realize it's link with Bulimia which I have had for 10 years. I'm very curious to see what this article says but it costs $35! I guess what I would most like to know is if the Bulimia ends would the Celiacs disappear if will I have it (if I do) for the rest of my life regardless?

I took a look at it for you. Of the ten people, four went into remission with the gluten-free diet, two are still seeking help from a dietician and doctors, two wouldn't stay gluten-free and still struggle with the eating disorder. The final two were lost to follow-up, although one improved short-term. Two of the people with anorexia sometimes consumed gluten to keep their weight down.

All the people who had a remission from their eating disorders were adhering to the gluten-free diet.

As Peter says, celiac disease never disappears. You will have it regardless.

Marz Enthusiast

I was good friends with someone who was bulimic in high school, and during college (or just afterwards?) she was diagnosed with celiac disease. I've lost touch with her since, so I don't know if the bulimia has gone away with going gluten-free, but at least in her case there was a link.

notme Experienced

is not eating because it hurts (but in my mind I simply wasn't hungry and food had no appeal to me) considered a disorder? cuz, now that I know what's wrong and adjusting my diet, boy does food taste good again. that reminds me: I'm hungry :) my husband of 20 something years has never seen me eat so much. sooooo... I can see the connection and I'm not a scientist.

RideAllWays Enthusiast

I just hate food. Wouldn't call it a disorder, but when I was growing up doctors/therapists thought I had bulemia from all the throwing up, and anorexia when I became scared to eat. I have always had an issue with my weight and I feel terrible about myself when I can't stick to the restrictions I put on myself. I have so many intolerances and am still thinking I have more because everything I try to eat makes me nauseous and gives me D.

But if you think about Celiac vs an eating disorder, in both cases you have to think very critically about what is put in your mouth, where is was made, compulsively read ingredients, many of us have to keep an eye on way more ingredients than just gluten, and some of us keep food diaries which make us extremely aware of anything that enters out bodies. I think it would be very easy for celiac and eating disorders to accompany each other.

sandsurfgirl Collaborator

I had bulimia off and on through my life and generally it was that I would have this horrible urge to binge on sweets like ice cream and then I would throw it up so I wouldn't gain weight. The urge to binge was overwhelming when it happened to me and I had to do it.

Going gluten free has completely erased my urge to binge. I strongly believe that the binging was my body's reaction to the malnourishment. I no longer have bulimia now that I'm gluten free.

Also, the mental emotional issues that go with the eating disorder have been healing being gluten free. Now I have to say that I had dealt with a lot of the bulimia before diagnosis but now I do not have the urge to binge at all.

Just tonight I made a gluten free cake with some great chocolate frosting. I ate half my small piece that I cut for myself and it was too much. So I stopped. Pre diagnosis I never would have stopped eating that piece of cake.

GlutenFreeManna Rising Star

I also can't do this diet as a vegetarian. I'm sensitive to dairy, so if i took out meat, I would have gluten free grains, vegetables and fruits. Oh, and nuts and seeds, I suppose. I have found articles about low carnitine levels in celiac patients (carnitine is a substance mostly found in red meat) reflect my own medical history perfectly. I feel much healthier and stronger when I incorporate meats and eggs into my diet (not chicken, but red meat, like buffalo and beef).

This describes me as well! This is so interesting to me. I tried to be vegetarian for many years and I felt miserable even though I was eating "healthier" according to some. I had to add red meat back into my diet slowly but once I did I started to realize that I felt better when I had meat at least once a week. So I'm no longer a vegetarian. I respect those that are and can do a gluten-free diet without feeling sick or missing anything nutrition-wise, but I can't do it. I do still love many vegetarian recipes though and about three or four meals a week that I have could be considered vegetarian or easily translated into a vegetarian meal by replacing things like beef broth for vegetable broth, etc.

As to the original topic of eating disorders this also fascinates me. I never considered myself to have an eating disorder, but I would throw up sometimes after eating a "rich" meal. Now looking back on it I realize that most of the "rich meals" that made me feel better after throwing up were packed with gluten. Perhaps some eating disorders are brought on by a self-protection mechanism in some people (I.E. Gluten intolerance). Now I'm not saying I think all eating-disorders are caused by gluten, but I would not be surprised at all if some people out there that have been diagnosed as having "control" issues when it comes to food really have gluten issues. I also wouldn't be surprised if the gluten-free diet "cures" some eating disorders just because it gives very detailed control to the individual. The two concepts are so intertwined, though, I think they would be hard-pressed to come up with a medical test to determine that one caused or leads to the other. In either case there could be strong correlation.

  • 3 weeks later...
gfquestion Newbie

I had a compulsive eating disorder that began in childhood, when I was very young. I think gluten intolerance creates, oddly, a craving for foods because we're not getting the proper nutrition because of the malabsorption issues. And, yes, I had a bloated stomach all throughout childhood. My mom told me that all the women in our family had that "pouch" (lower abdomen distention) and to get used to it. When my disorder turned into bulimia, I remember it was always, always, wheat-based foods that I would binge and purge with. Makes me wonder if the purging was just getting sick from the gluten sometimes.

I don't think any one thing causes an eating disorder. I do think that different variables combine to create an environment and an individual that is vulnerable to the illness.

I do know that now that I know I have celiac, I have absolutely no desire to enter into those destructive patterns again. Partly it is because i can't binge on gluten free foods! I don't get the same urge to just keep eating as I used to. As your body heals, you will get more nutrients from the healthy foods you're eating. Just make sure you're not seeking out gluten-free versions of your "trigger foods", the ones that trigger those destructive behaviors. I made that mistake, seeking out the gluten free donuts I'd heard so much about. Not a good idea. I try to eat clean, eggs, meat, veggies, fruit.

I am having the same experience. Today will be day one of no gluten-- if i can make it. I just feel so hungry and no amount of food will fill me so i just binge. I know that gluten is the culprit so I decide to start the next day by going gluten free, and since it will be for the rest of my life, i decide to let "today" be my last day of enjoyment, but then overindulge. Then the same thing happens the next day and week after week. I just found this forum and have read so much that i relate to and I think this will help me to stay gluten free. Today WILL be day one, and tomorrow day 2... i can do it, i can do it...i hope i can do it....

psawyer Proficient

Today WILL be day one, and tomorrow day 2... i can do it, i can do it...i hope i can do it....

You can do it, and we are all here to help you.

The Glutenator Contributor

hi im new to the board,

i hope this post is in the right place and is not innapropriate in any way. well, to provide a bit of background, i should mention that i am probably not one of the severely afflicted gluten intolerant sufferers, but my major symptom is extreme bloating and abdominal swelling. i didnt realize that i was gluten intolerant until fairly recently. before then, i had thought i was just fat and decided that i wanted to try diet and exercise. when i disovered that my seudo pregnant swelling went down after only eating fruits and vegetables but returned when eating outside of that diet, i went a bit overboard and was quickly sucked into an eating disorder. it may seem very trivial and vain to those who do not understand the psychology of eating disorders, but its a very difficult issue to deal with and recover from. currently, i am finding it hard to cope with a "healthy" gluten free diet because i ususally end up slipping back into old behaviors. i cant help but feel that my gluten sensitivity contributed to my problems and im wondering if there is anyone else out there who may share any similar issues.

any comments would be greatly appreciated, thanks.

Please check your inbox. It seems as though we have some shared experiences.

  • 3 weeks later...
Say-No-To-Gluten Newbie

I can definitely believe that there is a link to eating disorders and celiac disease. When I first had celiac symptoms, such as horrible stomachaches, I knew that I was incredibly full (but still felt ravenously hungry). I would binge on certain comfort foods and make myself throw up afterwards because I felt so sick/full. This eventually became somewhat of a habit, even when I wasn't feeling overly sick. I suppose the fact that I was living in Milan didn't help, but I definitely see how undiagnosed celiac disease could make a person bulimic.

When my symptoms of celiac disease got worse, I lost weight without even trying and for the most part, stopped making myself throw up. Eventually, my doctor had me tested for celiac disease and acid reflux. Since being diagnosed with both in February I'm feeling much healthier. I have energy and I stopped missing so many days of work due to sickness. I'm at a healthy weight and happy with life.

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    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
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