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I Want To Quit The Diet


againstthegrain

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Claire Collaborator

I think we should look at all our decisions the way we shop for food. clothes or cars. Most of us are influenced more than a little by the price. Every decision, like every purchase, comes with a price. All you have to do is to consider if you can 'afford' it. If it is a one time splurge expense, you probably will recover from it. If it is a big ticket item that you will be paying for in the future as well as the present then you have to rethink whether you can afford the cost in the long term.

There is a price to pay for quitting the diet. Some of it you can probably determine up front. Some of the 'cost' will be hidden. You wont know until the bill comes in - which could be weeks or even years away.

Would you buy anything where you didn't know what the ultimate price would be?

Untreated celiac spawns many autoimmune diseases. It is the prime cause of intestinal T-cell lymphoma (fatal). It can cause neurological damage that affects your ability to walk, talk, swallow etc. These are a few of the possible prices you might have to pay.

No one is stopping you from quitting the gluten-free diet. Do whatever you want or need to do - but not before you say to yourself: I am willing to pay the price - whatever it may be. Claire


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Bonnie Explorer

I understand EXACTLY how you feel. I am in the same position at the moment.

Had a gastroscopy and colonoscopy 2 weeks ago. GI told me not to go back on gluten for it. I have been gluten-free for a year. Had blood tests after 6 weeks gluten-free - they were understandably negative.

The gastroscopy showed major inflammation and LOTS of ulcers and absolutely no evidence of Celiac Disease - also not really surprising after being gluten-free for a year. So according to the GI I have a gluten intolerance which may or may not clear up with the ulcer meds. He has given me acid-blocker medication which he says I may have to be on indefinitely. He believes the ulcers and inflammation have been causing most of my symptoms and food sensitivities. I must admit after 2 weeks on the medication my bloating and stomach problems have calmed down a whole lot.

So do I try and eat gluten again after a while? Or do I just accept a diagnosis of gluten intolerance and stay off it anyway? I don't know what to do.

Yvonne

eKatherine Apprentice
Well, I don't claim to speak for others, so I can't answer for JodiC. As well, after the hell that some people have gone through I would never tell they are crazy if they are self-diagnosed. However, the fact is, like it or not, research is improved by accurate statistics. Positive blood work and positive biopsies are, at least right now, the only truly accepted standard of diagnosis for research. You have to have quantitative data to make real progress, you need numbers to back up statements like "it's more common than you think". Well, how much more common? Research costs money, and lets face it, diseases that affect more people draw more attention/money than things that are still generally thought of as "rare". I'm not dissing anyone or the choices they have made, but that's just how it is. I don't think those of us with the "gold standard" biopsy are trying to advance the cause, we are mostly just lucky that we know, without a doubt, what it is we have.

I don't see it as in any way my responsibility to advance medical science by spending maybe tens of thousands of dollars I don't have to convince doctors that the research information already available is correct. Unless you are actually participating in a research experiment, your data will never be compiled, aggragated or released in any form.

bluejeangirl Contributor
I understand EXACTLY how you feel. I am in the same position at the moment.

Had a gastroscopy and colonoscopy 2 weeks ago. GI told me not to go back on gluten for it. I have been gluten-free for a year. Had blood tests after 6 weeks gluten-free - they were understandably negative.

The gastroscopy showed major inflammation and LOTS of ulcers and absolutely no evidence of Celiac Disease - also not really surprising after being gluten-free for a year. So according to the GI I have a gluten intolerance which may or may not clear up with the ulcer meds. He has given me acid-blocker medication which he says I may have to be on indefinitely. He believes the ulcers and inflammation have been causing most of my symptoms and food sensitivities. I must admit after 2 weeks on the medication my bloating and stomach problems have calmed down a whole lot.

So do I try and eat gluten again after a while? Or do I just accept a diagnosis of gluten intolerance and stay off it anyway? I don't know what to do.

Yvonne

Yvonne,

I'm so glad you found out what is causing the pain and bloating. Did you get any other information as to why it got that way. I suppose you have to stay away from things like citrus and tomatoes etc. I'll get acid stomach pretty easy and if I have spaghetti sauce on polenta [which I love] I pay the price with a round of Prilosec. At $20 a pop its an expensive meal. But I'll so again no doubt. Especially since I get acidy with other foods anyway. I really hope you get better fast with the blockers. I would give it time to really heal and do a gluten challenge with a small amount of wheat and see how it feels but give it a couple of days so you'll know your not getting a delayed reaction. If you feel ok then eat more. I would never eat alot of it just because gluten is hard to digest, allergies or not, and why compromise the gut when it been through so much.

gail

gabby Enthusiast

How about this: instead of giving up, why not lean on the message board a little bit. It is worth a try before throwing in the towel (which you already know is not a healthy thing for you.)

Why don't you make a quick list of meals that you are having trouble with: for example: what to eat at restaurants, how to deal with backyard BBQs, lunch on the run, packaged snacks, etc.

And tell us what sorts of foods you hate so nobody will suggest them....and if you have any allergies..

And then let everyone send you great suggestions. you can make a big list, go shopping, keep lots of the stuff on hand, and take the guess work out of meal planning.

Heres the kind of thing I'm talking about: great saturday morning breakfast idea: Friday night, hard boil 3 eggs (10 minutes of rolling boil should do it). Run them under cold water when they are done and just stick them in the fridge.

In the morning, cut them in half lengthwise and scoop out the yolks. Put the yolks in a bowl and add some gluten-free mayo, some salt, and if you eat avocados, add about half an avocado. Mash it all up and spoon back into the egg whites. Some sliced tomato and a piece of gluten-free toast with butter and you've got a really great tasting breakfast.

Hope this helps

jkmunchkin Rising Star

You can't give up. The first couple weeks are the worst it gets. It's hard to learn how to eat all over again, like you're a 2 year old. But you can do this. We all know it stinks to give up some of your favorite foods, but I promise you are going to find new favorites. I've tried so many things that I absolutely love that I never would have tried had I not been diagnosed with celiac.

No food I ate before is worth feeling the way I did, and damaging my body and putting myself at risk for all sorts of diseases, and shortening my life.

We are all here to support you and help you learn all the incredible things you can still eat, and the new amazing foods to add to your life.

It's not easy, but it's worth it. Hang in there.

tarnalberry Community Regular

Definitely don't give up - with a lot of time and practice, it does get a lot easier. It doesn't have to take away all your freedom at all; it certainly doesn't impact mine, it just requires a bit more planning, and you may have to reconsider the way you think about eating. (It may mean more cooking and bringing your own food if you're out, or changing what you eat when out.) It's not an easy diet, by any means, but you can do it, and it's what you need to do in order to stay healthy if you have celiac disease.


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juve Newbie

hello guys, this is my first post.

i have been gluten free for agout 5 years, however i started eating gluten, because i am in college idon't have time to cook. i want to stop now. and i have been eating for about 3 months. can i get back on track. or is there an unrepareble damage done to me. can some please help. i am afraid i made a mistake and i want to fix it. is ther still a chance to clean my system from gluten. or the harm has been done.

thank for you help.

tiffjake Enthusiast
hello guys, this is my first post.

i have been gluten free for agout 5 years, however i started eating gluten, because i am in college idon't have time to cook. i want to stop now. and i have been eating for about 3 months. can i get back on track. or is there an unrepareble damage done to me. can some please help. i am afraid i made a mistake and i want to fix it. is ther still a chance to clean my system from gluten. or the harm has been done.

thank for you help.

I would guess that there is damage from eating the gluten-filled foods for 3 months, but that you can STOP the damage, and LET YOUR BODY HEAL by cutting out the gluten. You don't have to have time to cook to be gluten-free. There are Thai bowls that you just add hot water to them and you have a meal. And there is always salad, meats, veggies, fruits. You can do this. It is hard, but anything that is worth doing is worth doing right! You CAN do it!

flagbabyds Collaborator

I would say just cut out all the glten, even CC and stuff, make sure your dorn is 100% gluten-free, and stock up on soups that are gluten-free and instant gluten-free meals. If you start cutting out the gluten, then you should start feeling better soon, and your intestines should heal.

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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