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Could It Be Gluten-withdrawl?


Guest DanceswithWolves

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Guest DanceswithWolves

This morning I woke up hungry as I usually do. I had no real time to eat breakfast except for a banana. When I woke up my stomach was making the loudest gurgling sounds. Even when I got to work. So, I did an ultimate no-no....I had a pretzel...not one but three Snyder's Hard pretzels. I couldn't take it anymore. After I ate them...the noises stopped.

Could it be that my digestive system responds to Gluten like a drug? Like a bad drug?

Sure people get hunger pains....but is that what I'm having or is it my body's way of asking (practically pleading) for more gluten?

I think I'm getting worse. :(

I also have very dry hands in the morning and I tend to have a rash at times under my..( :unsure: ) private parts....you know..my twig and berries. Is it my shower soap?

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Paul-Bunyon Newbie

Gluten free pretzels are better than pretzels with wheat. You can get a case discount on them. I eat them almost every day.

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Jnkmnky Collaborator

You could hard-boil a dozen eggs at night to have in the morning. Sometimes I make a dozen eggs and for the next couple of days, my kids eat a cold egg squished onto toast. It's so easy. Bacon stays well in the fridge too, for a few days... and you don't even have to cook it in a pan. You can cook bacon on a plate that's layered with paper towels (to soak up the grease). Prepare a pkg of bacon in the evening if you prefer. Keep the hardboiled eggs and bacon in the fridge and all you have to do is make toast in the morning. That's pretty easy and very filling. You might want to microwave the slices of bacon in the morning to reheat them. Also, many of the carnation instant breakfasts are gluten-free. NOT ALL, THOUGH.

I don't think you're eating enough calories and that's why you're hungry in the morning. You may have a speedy metabolism. Try eating high calorie foods for a month and see if you gain weight and lose that hungry feeling. A banana wouldn't fill my 7 year old's stomach until lunch!

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Nantzie Collaborator

Speaking as someone who has been on the Atkins diet a few times, as well as some other carb and/or gluten eliminating weight loss diets, your cravings will be INSANE for about 3-5 days when you go off of gluten. But then after that, it reduces greatly.

I think it has a lot to do with the opiate qualities of gluten. Gluten really is addicting.

And I've also seen from family/friends who have had food intolerances, that the cravings are really bad when they cut that food out of their diet. But again, it's usually 3-5 days of cravings.

One time my stepmom had to go off carbs as part of an elimination diet, and she said that she would have stabbed somebody with a fork for a baked potato. So it can get REALLY intense. :P

If you think about it along the lines of any other addicting substance, like drugs, alcohol or cigarettes, the cravings are to be expected. You just have to plan for them.

And don't limit yourself to one banana or whatever. Make your food ahead of time. Make enough for a couple days. Then, if you end up being ravenous, you've got plenty of food. If you eat what you consider to be enough food for two days in one day... So what? Just double that when you do your cooking again and don't worry about it. The important thing for you is to eat the RIGHT foods, and don't worry about the quantity.

Create for yourself an environment for success. The more food you have prepared ahead of time, the less likely you'll feel the need to eat something that you shouldn't eat.

When I'm on a weight loss diet (interestingly enough the only weight loss diet that has ever worked for me was one that cut out wheat. hmm...), I make as much as possible ahead of time. Jnkmnky already mentioned the hard boiled eggs. I also cook a couple pkgs of chicken, a couple pkgs of hamburger and just put them in baggies or containers, and that's the protein base of pretty much every grab and go meal for a few days at least. Do the same thing with rice and potatoes. Then get some sauces like tomato sauce, salsa, etc., make sure they're gluten free, and you can mix and match.

If you have a desk or somewhere you could put it at work, you could bring a small picnic cooler to work to keep your food in with some reusable ice packs. That way you can keep your food away from areas where it could be taken or contaminated.

I've also gotten allergic reactions to skin care products. I have no idea what I'm allergic to in them because none of them have wheat. The worst was when I got hives so bad my eyes and face were swollen. That was three weeks before my wedding. Ack! I have seen posts on here though where people have had to change their shampoos and stuff because they have wheat in them. Check the ingredients. I don't know what chemicals are derived from wheat, but in hair care products actual wheat germ oil is a common ingredient.

Nancy

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Jenn2005 Contributor

My husband gets loud gurgling sounds also but its from the gas in his stomach. He is constantly belching (although it is getting better). If you are giving in to the hunger and eating gluten pretzels or anything else that has gluten you need to be better prepared with snacks and meals. There were some good suggestions mentioned for breakfast ideas and maybe you could take some snacks to work to hold you over until lunch. If you keep giving in and eating gluten you will never know if the diet is going to work for you. You have to be commited you health is worth it.

Jennifer

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debbiewil Rookie

I think you do what I do - I don't think about eating until I get hungry, and then there isn't time to actually fix things. So I've gone hungry or eaten the wrong things far too many times over the years. When I realized I HAD to go gluten free I had to sit down and think about it, make plans, and be prepared. It's not easy, but I've been gluten free for a couple of months now. I had to learn to think ahead and always have food ready made and available.

Keep some food handy for days when you're running late or just need a bit more. I keep a couple of packages of peanuts in my bag or my desk at work. The individual size bags can be bought at most convenience stores, and will keep for ages. I'll pick up half a dozen bags when I fill up my car with gas, and then I have them if I need them. I'll also pick up things like gluten free meal bars, carnation instant breakfast, gluten free crackers, etc. to keep in my desk or my car - anyplace where it's quick and easy to get at if I need it. And there are instant soups (Thai Kitchen, Instant Gourmet) that you can keep. There are a couple of beef jerky snacks that are gluten free, although most contain gluten. You really need to look at them. There are some kids snack food items - pudding cups, fruit cups, that are gluten free.

If you find that you usually wake up hungry in the morning, have something next to the bed to eat as soon as you wake up - crackers or some such will work. Then you will at least have something in your stomach BEFORE it starts giving you major problems because it is too empty.

You are going to get hungry - that's life. Expect it and prepare for it.

As far as the gluten addiction goes - yes it is an addiction and you will have cravings. It usually takes 3-5 days before the cravings stop. I beat it by planning a gluten free weekend. I cleaned everything non gluten out of my house Wed. night, except for what I fixed for breakfast and lunch on Thurs. Thursday night I went grocery shopping and only bought gluten-free products. Friday I didn't start getting the cravings until midway through the day - our bodies are used to going a few hours without, but expect some gluten within 24 hours. So finished up the day at work, went home, and basically locked myself in my house for the weekend. I had lots of food, it just didn't have gluten. Yes, I got headaches, cramps, and other withdrawal symptoms, but I made it through the weekend, and by Monday when I had to go back to work, I was pretty much over it. So it can be done. Hope this helps.

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darkangel Rookie

By having nothing but a banana for breakfast, you're playing havoc with your blood sugar levels, in addition to addictive cravings. You've got to plan ahead. We've already given you many different breakfast suggestions in your other thread. Make sure you eat some protein with each meal or snack. Preferably some healthy fat, too.

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tarnalberry Community Regular

I have to agree that the blood sugar issue is probably at least part of the problem. Your stomach can growl for a number of reasons, and being hungry is one of them. You put something in your stomach - even if it is "poisonous" - it's going to have food in it to try to digest, and you may get a false sense of being satiated. There's no substitute for being prepared, and there've been a lot of great ideas here!

As for the other issues, they may or may not be related to celiac. My first thought on the dry hands would be that it's getting towards winter, and heaters are on more often. The cold, outside air, and the dry, inside air, can be very rough on skin and generally take more moisture out of it than you're used to. Use lotion, balm, or straigh ol' oil, and you'll be alright. (And get plenty of fat in your diet.) The second issue is a problem my husband had. If you wear pants all the time, and are seated a fair amount of the time, you bring two areas of skin into close proximity. So even if it's not the soap, which it could be, it could either be a heat rash (localized), or even a skin-based yeast infection. (Yes, they happen; no, they're nothing to be embarassed about.) Talking to a doctor about it is, of course, the appropriate course of action, but home remedies for those possibilities can help as well.

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Guest DanceswithWolves

Great advice...once again.

Thanks all! :D

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Guest nini
As for the other issues, they may or may not be related to celiac.  My first thought on the dry hands would be that it's getting towards winter, and heaters are on more often.  The cold, outside air, and the dry, inside air, can be very rough on skin and generally take more moisture out of it than you're used to.  Use lotion, balm, or straigh ol' oil, and you'll be alright.  (And get plenty of fat in your diet.)  The second issue is a problem my husband had.  If you wear pants all the time, and are seated a fair amount of the time, you bring two areas of skin into close proximity.  So even if it's not the soap, which it could be, it could either be a heat rash (localized), or even a skin-based yeast infection.  (Yes, they happen; no, they're nothing to be embarassed about.)  Talking to a doctor about it is, of course, the appropriate course of action, but home remedies for those possibilities can help as well.

<{POST_SNAPBACK}>

I think I read something about yeast infections being related to Celiac... I know I used to get tons of them...

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tarnalberry Community Regular
I think I read something about yeast infections being related to Celiac... I know I used to get tons of them...

<{POST_SNAPBACK}>

True. I recall reading that there's a thought that recurrent yeast infections could be a trigger for celiac as well. Really, I should have been clearer and noted that fungal skin infections in areas that are prone to heat/moisture are common even amongst the healthy. It could be related, but there is plenty of chance it isn't.

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Nemi555 Newbie

When I first went on the Atkins diet a few years ago and then when I cut out gluten from my diet a month or so ago, I experienced withdrawal from the gluten! I found I was starving, not just hungry near meal times and even after I ate I felt hungry! For me it took about 2 weeks and those feelings/symptoms ceased. Now I'm normally hungry and a decent meal fills me up.

Hang in there!

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quantumsugar Apprentice

My best advice would definitely be: make sure you eat enough! Until recently, I would go most of the day on only a tiny bit of food (until nitetime, when I would eat a ton), mostly because I was out all day and couldn't find anything to bring with me. I would get cranky, sluggish, crave everything, and have all sorts of stomach issues. I feel so much better now that I pack food for myself each morning, I find I don't feel well if I'm not eating every few hours. Also, especially for the skin irritation, you may want to think about eliminating soy or dairy. Both of those bother my stomach like crazy and make me rashy (though gluten is worse for both).

Also, if you have ANY gluten still getting into your diet, not only are related rashes, etc going to stay (and your gluten cravings be worse) but your intenstines will be in a constant state of being damaged. In addition to all the stuff it could mean down the road, it means that your stomach will probably do that gurgling thing (like mine has been doing this week because I got glutened).

Good luck, and I hope you feel better!

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darkangel Rookie
I think I read something about yeast infections being related to Celiac... I know I used to get tons of them...

<{POST_SNAPBACK}>

Which came first, the chicken or the egg?

An overgrowth of yeast and other bad bacteria is common when eating foods your body can't digest and assimilate properly. You're also at risk if you:

* consume a diet high in sugar/simple carbs

* have taken broad spectrum antibiotics which kill off the good bacteria

* are a female on birth control pills

The bad bugs are gleefully feeding off what your body can't digest. Unbalanced intestinal ecology is just another piece of the puzzle.

About the dry hands, I've noticed when I wash my hands with liquid soap found in public restrooms, my hands get extremely dry. I can almost feel the skin drawing up. After some experimentation with brands at home, I discovered it's the antibacterial soap with triclosan in it that affects me. Moisturizing brands or the more natural brands I find at Wild Oats don't bother me. Just a thought...

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jnifred Explorer

I don't have much to offer really except my husband gets rashes in between his thighs, but he uses cornstarch every morning and that seems to help, he has large thighs and they rub and cause him to get abrasions, the cornstarch for whatever reason helps him at least.

Oh My, I jsut reread that and it sounds soooo funny to me!!!! Oh well.....

Oh and the dry hands, I have not used antibacterial soap for years because of that, and I too find that washing my hands in public can cause them to be overly dry, like that shrinking up feeling. I always use a good hand lotion after washing my hands in public and that has helped a lot too.

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Guest DanceswithWolves

Ok...so in the past 48 hours, I think I just experienced a full-on "Glutenization"...(Can I patent that term?) I think I will..."GLUTENIZATION tm."

Anyway...I went to work and my day started off alright, until the afternoon. I got SO HUNGRY that I thought I could eat my arm clean off the bone!

I had to work a short shift...so that meant no break for me until I was clocking out at 2:00pm. I go to the front of the store to see what kind of foods we have (I work in a sporting goods store). We had three different varieties of Beef Jerky. All contained Wheat and soy. Ok...pass on that. So in my desperate brain-fog hunger state of mind I buy a bag of peanut butter stufffed pretzel bites and a bag of salted cashews.

(Skip ahead if you know what happens next)

I chow down.

First, way too much salt.

Lips chapped like crazy!

I get home and thus, the irritability starts.

I literally get zonked asleep for a two solid hours!

I wake up in a hazey, allegery-congested and depressed state. My skin has red blotches all over my chest and tummy. Definitely an allergic reaction. Weird. :o

Made some hot tea.

I take my Prozac (like a good boy) around 9:00. I finish drawing an art project I was working on, clean out an entire closet, then I read some old magazines, make another tea (this time peppermint) watched SNL (sucked) and fell asleep around 12:30am again.

I wake up around 4:45am and eat a banana.

I sit here and type away because I have no one else to talk to at five in the morning.

Any comments?

:unsure:

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darlindeb25 Collaborator

I'm sorry hun, but I think you knew the pretzels were a bad idea. I do know that hunger you are talking about--it hits me still, after 4 yrs, I still get hungry like that and just seem crazed. I do feel for you, but you have got to stop this gluten eating--ok. Deb

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RiceGuy Collaborator

Wow. Once I learned my lessons, I resolved NEVER to eat the wrong foods. Not even at gun-point. OK, so I haven't actually been threatened with a choice of a pretzel or a bullet, but either of them would hurt.

I always keep peanuts on hand. But, beware that many of the brands may actually have a form of MSG on them! (some hide this fact by changing the name to something else, like some sort of hydrolized yeast, etc) Apparently, this is done purposly to make you eat more. Google can be so enlightening.

The only type of peanuts I get are the ones which have just peanuts and salt. They may be roasted in peanut or other vegetable oils, but that's ok. The label on these says "party peanuts" or something along those lines, depending on the brand. The ones in the glass or plastic containers usually are no good, but the ones in the can are more likely to be ok. Planters calls them "Cocktail Peanuts".

Observe the difference in the ingredients in these two products:

Open Original Shared Link

Open Original Shared Link

Now, ask yourself WHY do they put all those additives in one, when the other is so much better? What's up with that?!

As for other foods, I'd recommend instant mashed potatoes. You probably need the carbs, and potato is a great and safe source. Instant potatoes take like three minutes to make in the microwave. Add margarine or butter, and for an extra super kick blend in a slice of cheese. Now that's what I call satisfying! I find Betty Crocker makes by far the best tasting ones, and they have less additives than other brands too. I can actually eat them made with water, though the slice of cheese, which can be soy cheese, helps a lot in that case. I didn't like it so much at first, but I don't like what I'm hearing about dairy (hormones, antibiotics, pesticides, etc), though I don't think I react to dairy particularly.

I like corn bread/muffins, which are safe if you make 'em that way. They are great warm or cold, and you can eat them on the go. I'd have those handy too. Next time you want a banana, try putting peanut butter on it! I love that, and it is more satisfying. Just be sure the peanut butter is safe. The all natural kind is the only one I'll ever eat. Once I got through one jar of that, the major brands with their lard and additives are just disgusting.

I know others have already said it, but do yourself a favor for life, and stick with the proper diet. If you can't get out of work for a snack, bring something you prepaired ahead of time. Order something to be delivered to your workplace if you gotta, and let your boss know why you need to have a quick snack now and then. When I was first finding out about various health issues related to gluten (though I didn't know that part yet), I brought a pamphlet to work, and handed it to my boss. I was the only one allowed to arrive late for work! It wasn't totally tolorated, but it was understood that some sort of compromize was needed, and that it was not perminent.

I hope you get this under control, and soon. By the way, working in a sporting goods store, you probably are familiar with those mini refrigerators. That can be very handy at work too.

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Guest DanceswithWolves

I guess I thought I could make it til the end of my shift. Boy, did I think wrong. I guess a part of me is still in denial until I hear it officially from a doctor. But that will never happen. I thought about getting re-tested...but why spend all that money all over again, right?

I just don't want to be skinney and lose more weight. :(

I will make a new list of what I should shop for.

Thanks again.

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ravenwoodglass Mentor
Ok...so in the past 48 hours, I think I just experienced a full-on "Glutenization"...(Can I patent that term?) I think I will..."GLUTENIZATION tm."

Anyway...I went to work and my day started off alright, until the afternoon. I got SO HUNGRY that I thought I could eat my arm clean off the bone!

I had to work a short shift...so that meant no break for me until I was clocking out at 2:00pm. I go to the front of the store to see what kind of foods we have (I work in a sporting goods store). We had three different varieties of Beef Jerky. All contained Wheat and soy. Ok...pass on that. So in my desperate brain-fog hunger state of mind I buy a bag of peanut butter stufffed pretzel bites and a bag of salted cashews.

(Skip ahead if you know what happens next)

I chow down.

First, way too much salt.

Lips chapped like crazy!

I get home and thus, the irritability starts.

I literally get zonked asleep for a two solid hours!

I wake up in a hazey, allegery-congested and depressed state. My skin has red blotches all over my chest and tummy. Definitely an allergic reaction. Weird.  :o

Made some hot tea.

I take my Prozac (like a good boy) around 9:00. I finish drawing an art project I was working on, clean out an entire closet, then I read some old magazines, make another tea (this time peppermint) watched SNL (sucked) and fell asleep around 12:30am again.

I wake up around 4:45am and eat a banana.

I sit here and type away because I have no one else to talk to at five in the morning.

Any comments?

:unsure:

<{POST_SNAPBACK}>

Yea, why do you do this to yourself? Get yourself to the store and get some gluten-free snacks to hide around work. You must realize also that if you actually do follow the diet you msot likely can give up the prozac. Someone posted a wonderful link in another section and I am going to post it here for you. Please note the reference to some of us presenting with depression as a primary symptom.

Open Original Shared Link

I really hope you go gluten-free soon, it really is worth it and as my son said last night "Mom I am done experimenting, I don't care if I eat the same salami sandwices for lunch every day of my life, I'd rather be bored with my food than so depressed I can't function." Gluten is such a brain toxin for us that it makes life almost unliveable sometimes. I hope you listen to your body soon.

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RiceGuy Collaborator
I guess I thought I could make it til the end of my shift. Boy, did I think wrong. I guess a part of me is still in denial until I hear it officially from a doctor. But that will never happen. I thought about getting re-tested...but why spend all that money all over again, right?

I just don't want to be skinney and lose more weight.  :(

I will make a new list of what I should shop for.

Thanks again.

<{POST_SNAPBACK}>

I got nothing but worse by listening to doctors. None of them got even close to figuring out what was making me ill.

I don't think you have to worry about losing weight. You only need to provide your body with proper, balanced nutrition. Natural vegetable fats like those found in peanuts and beans are part of a healthy diet. Olive oil is super if you get the right one. Also the proteins from vegetable sources are what the human body is designed to use. The animal fats and proteins are the ones to avoid. They aren't the same, though I know the commercials have got the public thinking otherwise. Carbohydrates like from potatoes, rice, beans, etc are essential too. There isn't anything in wheat that you can't get from other sources, except maybe the gluten!

If you are really on Prozac, you need to read up here: Open Original Shared Link

If you ask me, that stuff ain't helping you. That's my opinion of course, but I have facts to guide my thinking. I don't even take asprin or even a cough drop. Instead of masking symptoms or altering brain chemistry, I attempt to find the actual cause, and fix it. I don't know what you are taking it for, and I won't ask. It's not by business to know, but honestly, your body isn't out of tune for lack of drugs. Give your body the proper tools (nutrients) to maintain itself, and it usually does. It's only a lack of understanding that causes much of our health problems.

OK, I don't want to sound like I'm lecturing you. Really. I just know how tough it can be, as most of the others here do. Sometimes though, it seems people have grown up without the benefit of knowing simple but vital nutritional facts. All the drug commercials have a way of convincing the uninformed that drugs are somehow the answer to everything. (rant is now over)

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ravenwoodglass Mentor
If you are really on Prozac, you need to read up here:  Open Original Shared Link

<{POST_SNAPBACK}>

RiceGuy Off Topic but thanks.

Even though I am in tears right now I want to thank you for that link. My DD will bear the physical scars resulting from her antidepressant use for the rest of her life and it was only by the grace of God that we were able to prevent her suicide.

The pictures of the parents really got to me, brought back the memories of hiding all sharp objects and the locking of the drug cabinets and the nights spent listening by her bedroom door for her breathing, and the anxiety of not hearing it and opening the door with fear of what I might find behind it. Celiac disease and antidepressants don't mix well. It is just trying to treat one toxin with another and often rebounds. I hope doctors start listening to the NIH and testing for celiac before giving these things out to anyone but especially young people.

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darkangel Rookie
I guess I thought I could make it til the end of my shift. Boy, did I think wrong.

<{POST_SNAPBACK}>

Always, always carry safe snacks with you and/or store them where you work. Even if you leave the house and think, "I'm not hungry. I'll be back home in time," take something anyway.

Before I go to bed, I gather everything I'm going to need for the next day. In the morning, I pack my lunch, morning and afternoon snacks in an insulated cooler with one of those frozen thingies and I'm ready for the workday. It's a little extra effort, but you get used to the routine.

I've found several energy bars that are gluten and dairy free. If I'm only going to be gone for part of the day - like weekend errands - I'll drop one of these in my purse. Or a small box of raisins. Cliff Bar has a line called "nectar" that are only dates, nuts and other types of fruit. Then there are plain potato chips, corn chips, mixed nuts, sunflower and pumpkin seeds, etc.

These days, there are too many companies out there making gluten-free snack products for you to ever be without.

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jerseyangel Proficient

I strongly agree that you need to ALWAYS have safe food with you when you leave your house! I know its easy to forget or let it go right after breakfast when you're not hungry, but a little pre-planning will prevent accidents later on. I don't even go to the grocery store without at least an Envirokidz bar in my purse. On your day off, I suggest go shopping and stock up on your portable food so you have it there in the morning and just throw it in a bag to take to work. You know what to get--a lot of the previous posters have given good examples. Also, after reading your posts, I would also suggest you get enough protein, especially in the morning. Even leftovers from last night's dinner would work. Just fruit in the morning will burn off quickly, the protein will stay with you longer. Hope you feel better soon :)

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Guest DanceswithWolves

I did get a list of gluten-free foods from Kati USA...but it was 70-some pages! I only printed out half of them.

One thing I did find that helped my hunger pains were Cashews. I got them at work. No more pretzels for me.

The crazy thing is, I hear my mother burping loud all the time. I even tell her.."did you eat any bread?" I think she just doesn't want to admit that I may have gotten this from her. I don't want to upset her either since everyone says celiac disease is hereditary.

What about milk and dairy products? Do most of you serious Celiacs cut out dairy completley? :huh:

With me, I guess potatoes are really the one thing I know that will fill me. I'll actually feel full.

What I'm trying to figure out is if it's just a single thing that is causing all this or a combination.

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    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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