At A Loss

[lilgooberluvsya]

First of all this may be long, so please bear with me. In advance thanks

I am at a loss at this point with what is going on with me.

As a child I don't recall having any real problems with food. However I did develope an eating disorder around roughly the 6th grade, I was extremely anorexic, over exersicer and bulimic ( all in one)

However I am recovered and have been in recovery since October/November of 2006.

I am also a runner training for my second marathon

Since Than, at least that I recall, I don't recall much about food in my house as a kid, as I was starving anyway, and food in my house was a dysfunctional thing in general.

I have a extremely unhealthy family history ( and I am careful as to what I eat generally at this point to not fall into my disease and to watch my habits so as not to end up with anything my family has)

High blood pressure, heart disease, diabetes, strokes, cancer.

I digress, Since about 2006/2007. I have noticed that whenever I eat anything like chocolate, fresh bakery, chips, bagels, bread, alcohol, cookies, pizza, pasta, anything delicious and heavy and starchy I guess. I get really bad heart burn/ acid reflux to the point I am going to throw up ( I never do) lately it seems to have progressed to a lot of times after I eat (today was Jimmy Johns, the other day was a chicken sandwhich and ice cream) I get headaches.

I am currently a little overweight. roughly 170 at 5'7''. But for the most part eat veggies, fruits, I exercise at least 3 times a week and constantly feel bloated. I feel constipated all the time. I get what feels like to me a feeling of hypoglycemia if I don't eat every two hours (though when I test my blood sugar it is in normal range) I am a fire fighter so I test it at work haha

I have in the past tho failed a glucose tolerance test in which I drank the nasty sugar water, my body I guess metabolizes it extremely quick. ( the

doctor than said almost like a fast metabolism or opposite of what a diabetic would be I guess)

I have had my thyroid tested as to why my weight wont move it was just above the low range. I have been tested for h pylori that was negative, the doctor has not noticed any damage from the stuff I did to myself in the past.

i have also noted that people with psych issues seem to have a releif when gluten free. I also find it very hard to pay attention ( could be from feeling tired easily) when reading or following conversations etc..

I am at a loss as to what is causing the heart burn, (nothing helps it tums, prescription stuff or over the counter stuff)

or the headaches, or the drowsinesss. constipation, or bloating, or even lack of trying to get my weight to balance at a good healthy weight for a fire fighter/ marathoner.

I do ask, please do not be smart or assume that it is the eating disorder, those days are behind me, and makes it much harder to find a doctor or anyone who will take my complaints and s/s seriously, as I get it a lot that its the eating disorder, I have been through treatment I have seen doctors I do not care about being super skinny. I do care about feeling good, having good energy levels ( I usually get anywhere between 6-8 hours of sleep a night) and being able to eat with out the constant burning after I eat.

so I first apologize for the rambling, I hope i wasn't too confusing, and whether its celiac or anything else I would just love some brainstorming from you please.

Note: I have tried cutting the stuff out, and at least the heart burn goes away .. i haven't been able to cut it out long enough to notice if its helping energy or bloating. But I do know fruits and veggies and rice, don't really seem to caUse any problems for me.

[lilgooberluvsya]

I also feel like I am Always hungry- as if I am craving certain foods or have to have more. I have tried drinking a full glass of water before eating to try and get a full sensation-doesn't help.

Sometimes I feel like I Am hungary, but can't for sure distinguish if its hunger or if i'm nauseous.

So i guess would

severe heartburn after certain foods,

in ablitly to lose weight,

feeling bloated,

tired a lot after 6 - 8 hours a night

negative h pylori test

no help from tums or prilosec or anything like that,

neg signs from damage from an ED

headaches after eating sometimes

random changes in what feels to be blood sugar

abnormal glucose tolerance test

My grandma also has a super sensitive GI, is always on the toilet, seems like she gets upset stomach from everything

Constipation

occassional migranes..

And thinking back to high school I had a lot of these symptoms than to.. but brushed them off to my eating disorder i had at the time

Would a lot of this stuff point to Celiac or any other ideas

Im at a loss and don't have insurance. Its hard to be gluten free working at a fire house and eating with the crew.

But it feels when I eat less or cut out the carbs I feel better to a degree. at least no nauseating heartburn. I also don't want to be that your just trying to get attention person.

[Skylark]

I have noticed that whenever I eat anything like chocolate, fresh bakery, chips, bagels, bread, alcohol, cookies, pizza, pasta, anything delicious and heavy and starchy I guess. I get really bad heart burn/ acid reflux to the point I am going to throw up ( I never do) lately it seems to have progressed to a lot of times after I eat (today was Jimmy Johns, the other day was a chicken sandwhich and ice cream) I get headaches.

Welcome. It sounds like you belong here. If this is your list of problem foods, and rice and fruit sit well, then gluten could absolutely be your problem. It's a shame you can't get a blood test, but a good strict try of the diet will tell you whether gluten is the problem. You just won't know for sure whether you're gluten intolerant or actually celiac.

Gluten can cause eating disorders. Some celiacs lose their appetites and get anorexic as their minds send "stop poisoning me" signals. Others find the anxiety that gluten causes in so many of us feeds into an eating disorder. Always being hungry and even gaining weight can be a sign of malabsorption. Your body is trying to find vitamins that you simply are not getting from food because you're not absorbing them.

It's hard, but you have to be strict on this diet for a few months to get a good answer about whether it causes your symptoms. You're probably going to have to bring a lot of your own food to the fire house. We can help you as far as moral support and with what's safe to eat if you like.

Good luck!

[lilgooberluvsya]

Welcome. It sounds like you belong here. If this is your list of problem foods, and rice and fruit sit well, then gluten could absolutely be your problem. It's a shame you can't get a blood test, but a good strict try of the diet will tell you whether gluten is the problem. You just won't know for sure whether you're gluten intolerant or actually celiac.

Gluten can cause eating disorders. Some celiacs lose their appetites and get anorexic as their minds send "stop poisoning me" signals. Others find the anxiety that gluten causes in so many of us feeds into an eating disorder. Always being hungry and even gaining weight can be a sign of malabsorption. Your body is trying to find vitamins that you simply are not getting from food because you're not absorbing them.

It's hard, but you have to be strict on this diet for a few months to get a good answer about whether it causes your symptoms. You're probably going to have to bring a lot of your own food to the fire house. We can help you as far as moral support and with what's safe to eat if you like.

Good luck!

I have a marathon I'm running the first sunday in October, Its so hard being an athlete since I was little to give up spaghetti,( what are some simple trade offs) I have tried some gluten free breads and stuff and the flavor is not .. well normal bread haha, is it like that with all the gluten free foods, and what are some good ways to not spend a lot of money. .but for example..

I made salmon with rice and asparagas last night and that was perfect no problems.. today I have JJ's for lunch and trix for bfast and i feel like .. you know what all day.

So the ED may have been made worse by it?

[psawyer]

For pasta, try Tinkyada brown rice pasta. It is so close to the "real" stuff that many people cannot tell the difference.

[lilgooberluvsya]

For pasta, try Tinkyada brown rice pasta. It is so close to the "real" stuff that many people cannot tell the difference.

Thanks I will definately try to check that out hopefully this week I would assume I could probably find that at a health food store?

[MelindaLee]

I have a marathon I'm running the first sunday in October, Its so hard being an athlete since I was little to give up spaghetti,( what are some simple trade offs) I have tried some gluten free breads and stuff and the flavor is not .. well normal bread haha, is it like that with all the gluten free foods, and what are some good ways to not spend a lot of money. .but for example..

I made salmon with rice and asparagas last night and that was perfect no problems.. today I have JJ's for lunch and trix for bfast and i feel like .. you know what all day.

So the ED may have been made worse by it?

I am new to this, too. I was diagnosed only a month ago, but have learned SO much here. There are many people who understand this so much better than me, but I will share the little I do know. I was fortunate to not have aweful symptoms undiagnosed or misdiagnosed for long time. However, many things I thought were normal parts of aging, have resolved, or at least gotten much better. (migraines, arthritis, psoriosis, fatigue, forgetfulness)

Not all the food tastes "un-normal" but it does take some getting used to. I definately like the Udi's bread. I am not super sensitive like some people are, so I do okay eating places as long as I keep to the simple stuff and watch possible ingrediants. My husband, who doesn't need to avoid gluten (and generally thinks "my stuff" tastes gross) loves the quinoa/corn pasta. He can't even tell the difference. (He happens to be a firefighter as well ) It is a bit pricier than wheat pasta, but you can find it online in bulk and it's a better price. There are lots of mainstream food that are okay if you have to avoid gluten. If you watch this forum...you will see lots of great information. Also, there is a specific part of this forum that is for athletes...I wonder if they might have some great answers for you in regards to training.

Welcome and Good Luck!

[lilgooberluvsya]

I am new to this, too. I was diagnosed only a month ago, but have learned SO much here. There are many people who understand this so much better than me, but I will share the little I do know. I was fortunate to not have aweful symptoms undiagnosed or misdiagnosed for long time. However, many things I thought were normal parts of aging, have resolved, or at least gotten much better. (migraines, arthritis, psoriosis, fatigue, forgetfulness)

Not all the food tastes "un-normal" but it does take some getting used to. I definately like the Udi's bread. I am not super sensitive like some people are, so I do okay eating places as long as I keep to the simple stuff and watch possible ingrediants. My husband, who doesn't need to avoid gluten (and generally thinks "my stuff" tastes gross) loves the quinoa/corn pasta. He can't even tell the difference. (He happens to be a firefighter as well ) It is a bit pricier than wheat pasta, but you can find it online in bulk and it's a better price. There are lots of mainstream food that are okay if you have to avoid gluten. If you watch this forum...you will see lots of great information. Also, there is a specific part of this forum that is for athletes...I wonder if they might have some great answers for you in regards to training.

Welcome and Good Luck!

One of the guys at work loves that quinoa stuff. I have not yet tried it.. scared to after I botched couscous last year. But I'll give that a try to. My roommates generally okay for trying new foods too.

I want to say this forum seems awesome you guys are very welcoming much appreciated.

[psawyer]

Thanks I will definately try to check that out hopefully this week I would assume I could probably find that at a health food store?

I'm not sure where you are, but here in the Toronto area it is sold in some regular grocery stores.

[Skylark]

I have a marathon I'm running the first sunday in October, Its so hard being an athlete since I was little to give up spaghetti,( what are some simple trade offs) I have tried some gluten free breads and stuff and the flavor is not .. well normal bread haha, is it like that with all the gluten free foods, and what are some good ways to not spend a lot of money. .but for example..

I made salmon with rice and asparagas last night and that was perfect no problems.. today I have JJ's for lunch and trix for bfast and i feel like .. you know what all day.

So the ED may have been made worse by it?

There was a published case study of ten people with severe ED and celiac who were at an ED clinic. The people who were willing/able to stay strictly gluten-free improved and the people who didn't stay gluten-free had very little change in the ED. Interestingly, there is a higher incidence of ED with type 1 diabetes, another autoimmune condition associated with celiac.

The best way to avoid spending a lot of money is to do exactly what you did last night. Cook good foods that are naturally gluten-free! Stuff from the regular grocery store like Rice Chex, brown rice, potatoes, and corn tortillas are cheaper than specialty gluten-free foods. If there's Trader Joe's in your area, it has an inexpensive gluten-free pasta. I get Crunchmaster rice crackers in bulk at Costco.

You should definitely post to the sports section of the board to ask about gluten-free marathon eating. I know there are some endurance athletes around here. (Not me! )

[lilgooberluvsya]

There was a published case study of ten people with severe ED and celiac who were at an ED clinic. The people who were willing/able to stay strictly gluten-free improved and the people who didn't stay gluten-free had very little change in the ED. Interestingly, there is a higher incidence of ED with type 1 diabetes, another autoimmune condition associated with celiac.

The best way to avoid spending a lot of money is to do exactly what you did last night. Cook good foods that are naturally gluten-free! Stuff from the regular grocery store like Rice Chex, brown rice, potatoes, and corn tortillas are cheaper than specialty gluten-free foods. If there's Trader Joe's in your area, it has an inexpensive gluten-free pasta. I get Crunchmaster rice crackers in bulk at Costco.

You should definitely post to the sports section of the board to ask about gluten-free marathon eating. I know there are some endurance athletes around here. (Not me! )

Thanks for the advice.. I have noticed betty crocker has a lot of gluten free things now too ( though I try to avoid that stuff anyway) but i did notice fruity pebbles is .. which is AWESOME!!! cuz that has always been one of my fave foods. Is trader joes similar to an outpost or we have another place locally i can't think of.

That ED and type 1 diabetes stuff is actually rather interesting to me... so in a way eating gluten free may help me with my body image issues in a away too? or no. And do ppl wtih celiac do they have weird feelings of low or high blood sugar, bt the sugar levels are always normal.. its just weird to me that i feel like a text book diabetic but i test my sugar and its like in the 70's or 80s.

And I am hoping over to the sports board now thanks again!

And how long do you guys think it takes.. roughly to notice if the gluten free diet is working? Or to give up on that route and try another? and will it help me lose weight more effectively?

[lilgooberluvsya]

There was a published case study of ten people with severe ED and celiac who were at an ED clinic. The people who were willing/able to stay strictly gluten-free improved and the people who didn't stay gluten-free had very little change in the ED. Interestingly, there is a higher incidence of ED with type 1 diabetes, another autoimmune condition associated with celiac.

The best way to avoid spending a lot of money is to do exactly what you did last night. Cook good foods that are naturally gluten-free! Stuff from the regular grocery store like Rice Chex, brown rice, potatoes, and corn tortillas are cheaper than specialty gluten-free foods. If there's Trader Joe's in your area, it has an inexpensive gluten-free pasta. I get Crunchmaster rice crackers in bulk at Costco.

You should definitely post to the sports section of the board to ask about gluten-free marathon eating. I know there are some endurance athletes around here. (Not me! )

Also is it better to go cold turkey right off anything gluten or wean off it ( i'm kinda hoping wean off it lol. .i'd hate ot have to have a funeral for all my yummy food haha

[Skylark]

Well, given the all the nausea and heartburn you're getting I can't imagine wanting to eat gluten for long.

It's funny. Now that you mention it some people do have withdrawals from gluten. Folks are always advised to go cold turkey by doctors, and they're often desperate to get rid of the symptoms so it's fastest but I wonder if that's the best idea for everyone? Sorry, that's not much of an answer but you really got me thinking. There's a narcotic-like component of gluten for some people and gluten withdrawals are not uncommon on the board.

Do what works for you. Just be sure you get to 100% gluten-free and then give the diet 3-4 months so you have a chance to heal. If your body image has some anxiety component to it, you may find yourself more comfortable. I really don't know how ED work in people's heads. I was bipolar from gluten - never ED issues.

Food intolerances can cause reactive hypoglycemia. I'm still getting it some gluten-free so I'm trying a stricter food chemical elimination in the hopes of feeling better.

[ravenwoodglass]

Also is it better to go cold turkey right off anything gluten or wean off it ( i'm kinda hoping wean off it lol. .i'd hate ot have to have a funeral for all my yummy food haha

In my opinion it is best to go cold turkey. Gluten in us causes antibody reactions and you want to stop those reactions as quickly as you can. Gluten can also be addictive so when folks stop it they can go through withdrawls and if you feed that withdrawl craving it will keep the withdrawl process going. If you go cold turkey the withdrawls, if you have them, will be over sooner.

Some of us will also react more strongly to gluten after we are gluten free. So if you are gluten free all week but then cave to the urges with say a couple doughnuts on the weekend you may find they make you feel worse than when you were eating gluten everyday. This is normal and is your bodies reaction to the sudden flood of antibodies.

[lilgooberluvsya]

sorry for the million questions.. just keeps me thinking..

Are people without celiacs addicted to gluten also..

is this why my roommate constantly calls me a carb adddict, and why I keep only wanting to eat the crap lol. I do feel addicted, sometimes I'm not even hungary for the stuff its like automatic pilot i go and eat it.. man its hard to quit cold turkey but I do go a couple days without it, than eat something with bread or a donut, and i do feel even sicker or hte heart burn is worse

[ravenwoodglass]

sorry for the million questions.. just keeps me thinking..

Are people without celiacs addicted to gluten also..

is this why my roommate constantly calls me a carb adddict, and why I keep only wanting to eat the crap lol. I do feel addicted, sometimes I'm not even hungary for the stuff its like automatic pilot i go and eat it.. man its hard to quit cold turkey but I do go a couple days without it, than eat something with bread or a donut, and i do feel even sicker or hte heart burn is worse

In my opinion no they wouldn't have the physical addiction to it. People can be psychologically addicted to anything though.

What you are doing by being gluten free and then eating it is a mini-challenge. Your body seems to be clearly telling you it doesn't want gluten. Up to 30% of celiacs have false negatives on the blood tests and false negatives are also fairly common with the endo. Also some doctors don't recognize the early changes of celiac in the endo exam and won't diagnose it until the villi are totally destroyed.

[MelindaLee]

sorry for the million questions.. just keeps me thinking..

Are people without celiacs addicted to gluten also..

is this why my roommate constantly calls me a carb adddict, and why I keep only wanting to eat the crap lol. I do feel addicted, sometimes I'm not even hungary for the stuff its like automatic pilot i go and eat it.. man its hard to quit cold turkey but I do go a couple days without it, than eat something with bread or a donut, and i do feel even sicker or hte heart burn is worse

I am (was ) a huge carb addict. I went cold turkey 4 weeks ago. Though I have sad moments when I think..."I will never get to try ____", I do feel better. If I let myself cheat, I think I would never quit. (This is the one diet I have been able to stick to, as my pay off came pretty quick )

[mushroom]

I think you are answering your own question here, lilgoober. We do tend to crave that to which we are addicted which is bad for us. Yes, I would venture you are probably a carb addict, as I was - could eat a whole loaf of sourdough french bread if I didn't control myself, and certainly not because I was still hungry. It is hard to quit cold turkey, but IMHO it is even harder to keep the craving alive by intermittent feeding. Quit it and get over it. I quit smoking cold turkey back when there were no quit-smoking aids; and although the initial response is vile you don't linger on. Do the suffering and be done with it, I say

[lilgooberluvsya]

So I am thinking I may try to stay gluten free or at least do my best to keep it out of my diet as best I can... at least see what happens.. seeing as I know I won't have insurance for another 3 months at minimum.

couple questions on that..

are all meats okay?

what about seasonings you would put on them

when reading a label what am i looking for on a label that is a no go

what beverages are okay? skim milk? juice? soda?

and if I am nutrient deficient.. I have had vitamin D checked before it was normal but on the low end of normal. and i know in high school everytime I tried giving blood I was anemic, I do bruise easily

I have been taking some supplements from AMWAY if any of you are familiar with those. Do supplements get absorbed, or not because of this whole gluten thing.

I'm also thinking I may talk to my grandma tomorrow and ask if shes ever had this looked into as a possibility.. cuz my understanding after reading other threads is that it can be genetic?

I did send a non emergent message to my doc asking her her thoughts, (they have this awesome med chart thing online) so we'll see what she says.

Thanks again for all the help.

[lilgooberluvsya]

These are the labs I have gotton before I ran out of insurance ( I did just start with my new doc, so not much)

Vitamin D 29.4

TSH REFLEX 0.517

HELICOBACTER PYLORI IGG AB 0.53

and she checked my blood sugar 96 ( I didn't have anything to eat or drink for i think like 13 hours prior to the blood sugar ) it was just the finger poke kind, tho in the past with a previous doctor i had a slightly abnormal glucose tolerance test

[Skylark]

Plain meats you cook yourself are naturally gluten-free. You have to double-check about lunch meats, sausages, some ham glazes, and pre-seasoned meats. Many are gluten-free.

As far as cooking, all plain herbs and spices are fair game, as are onions and garlic. By "plain" I mean buying a bottle of oregano or basil. The things to avoid are seasoning mixes, as many contain flour to help brown the meat or thicken gravy. San J brand tamari sauce is gluten-free, and Lea & Perrins Worcestershire sauce is gluten-free (one of my fave things on steak). Heinz Ketchup is gluten-free, as are Sweet Baby Ray's BBQ sauces.

Label reading - check here, and also check the allergen statement for wheat.

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

As far as beverages, you can have milk, fruit juices, soda (never seen gluten in one yet), coffee, tea. Things with gluten are beer, malt liquor, the malt alcohol in some wine coolers, malted milk, and herbal teas with malt or barley. There is an urban legend floating around about gluten paste on teabags. It is wrong.

Supplements may or may not be absorbed until you are 100% gluten-free for a few months. I was low normal vitamin D and my doctor told me to take 2,000 IU a day. B12 is another good one to supplement, with a sublingual methylcobalamin. Many of us are deficient.

If your grandma has stomach trouble, yes it's a good idea to mention it to her.

[elk]

I think gluten and dairy definitely have addictive properties, which is hard to notice when you eat it all the time. Once you are "off" of it, the cravings should go away. However, you have to be careful of processed foods as most contain flavor enhancers, like MSG (hidden under a ton of aliases) which is addictive and makes you want to eat more. Not to mention all the other nasty chemicals in processed "food"... stick with whole foods (grass fed and organic as much as possible) if you want real nutrition. It might be tough at first, but it's really just a matter of creating new habits.

[rhiannon34]

Thanks I will definately try to check that out hopefully this week I would assume I could probably find that at a health food store?

I got some at Target, and it is really yummy. And don't worry, I had anorexia/bulemia myself. All of my symptoms seemed to get worse after that, I think mabye the stress on my body kicked off something or made it worse.

[tarnalberry]

You can have reactive hypoglycemia (which it sounds like you do) with or without celiac. Basically, those starchy foods (ugh to the Fruity Pebbles!) cause your blood sugar levels to rise quickly, but your body pumps out the insulin and responds to it quite quickly, so your blood sugar levels drop quickly. It's not as much about what the levels are (though low blood sugar levels ARE a problem, and the low 70's is borderline even in "normal" ranges), as how quickly it drops. You may find that balancing your meals better - a better, more even, distribution of fat, protein, and carbs helps you feel better. (Gluten free, of course. )

[gf-soph]

You can totally have an addictive type relationship with gluten - I used to work in a bakery and could totally gorge on the lovely fresh white bread. Would eat more than I wanted to, but didn't have the self control that I do with other foods.

It sounds like it is so worthwhile you going gluten free for a decent period of time, you need to commit to at least a few months. I would recommend keeping a detialed food and symptom diary during that time, like I only picked up that foot cramps and mouth ulcers are my glutening symptoms because of the diary. It can also be great for motivation, as it is easy to forget how awful you felt onths down the track.

I also had some problems that seemed insulin/glucose related. One dr was so sure he started me on metformin before the results of the testing even came back. I had a 1 hour insulin level just above normal but nothing super significant, but my glucose was fine throughout. I used to crash after eating meals, it was so bad I used to delay lunch to 3 pm just so I could get work done.

For me, it turns out it was food sensitivies that had me crashing (seems like high salicylate foods). I am on an elimination diet now, and I only get the tiny fraction of the crashing and brain fog that I used to.

Long story short, it's worth trying gluten free. If it helps but doesn't fix everything, you could have some secondary problems, but give it about 6 months until you decide any specific symptoms aren't due to gluten.