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I Feel So Much Better....but Why Can't I Do It?

staci002

By staci002
in Coping with Celiac Disease

Recommended Posts

staci002 Rookie
staci002
Posted

After being gluten free for almost two months I felt so much better. So why would I not want to stick with it? I'm ashamed of myself. My family has listened to me complain for years about not feeling well. I've been diagnosed with fibromyalgia, thyroid disease, and chronic fatigue syndrome. But guess what?....after being gluten free a lot of my symptoms disappeared. I had energy for the FIRST time in my life. I've spent the majority of my life sleeping, not the way I want to live so what is wrong with me? I spent an entire year with a bloated abdomen but it disappeared after going gluten free. I don't understand myself. I knew it was going to be a drastic change but I was okay with it for about 2 months and then it all changed.

I'm so mad at myself and I feel worse than ever. Could it be because I don't have the "official" celiac diagnosis? (My blood test came back negative)But that shouldn't matter if I feel better. Is it because I am sick of reading labels before I put something in my mouth? I feel like I am in mourning. There were times when I felt like crying over not being able to eat a piece of bread! This is ridiculous! Why would I knowingly want to "poison" myself with food?

I'm sorry for whining, but has anyone else went through this? How do I get back on track and stay there? Please help!

Bloated, miserable, and feeling like a failure,

Staci

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Katrala Contributor
Katrala
Posted

I'm 2 months in as well and I know how you feel.

There are times when I'm just fine with it and then other times when I walk into the kitchen and want to scream and cry.

The only things that have worked for me so far is reminding myself that "tomorrow the current craving, etc. won't seem like such a big deal" and making food a non-important part of my life.

I have began to think of food as a way to stay alive and not as anything more than that. If it tastes good, then that's just icing on the cake, but otherwise I just can't let it be a big deal to me. There are too many other fantastic, amazing things in life to focus on other than food. I can't have the cake? So what.. I'll have whatever gluten-free things are available and will have fun in another way.

And I am always grateful that wine is gluten-free. =)

mamaw Community Regular
mamaw
Posted

You are still very new to the gluten-free lifestyle. People go through mourning just as one does for the loss of a loved one. By going gluten-free you are loosing a part of your beig that you were taught from a very early age, eating & food. So all that you have learned about eating healthy & so much more is now not the way you live your life. Wheat is not the staff of life for every one....

I felt soooo much better going gluten-free I would never go back or even cheat ever. It has been years & years for me...Even if a pill or injection becomes available I will never eat wheat again.

It takes will power & determination.... & if you get ill enough you will learn a hard lesson. Also think about all the illness that gluten can do to your body... Think of wheat as rat poison & every time you want it think of poison....would you eat rat poison??? Keep telling yourself you can do this & think poison

......

It is a choice we all need to make & control. I never would want something or someone to control me so Don't let it win.......

blessings

mamaw..

joej1 Apprentice
joej1
Posted

I know its hard, but you may want to look into some mental/emotional issues as well. Are you getting anything out of being ill? It's not an easy path but there are a lot of good books out there. I had gluten issues and H. pylori as well, but i also found out that i had a lot of mental/emotional issues to deal with. These are common with food allergies and include perfectionism, sensitivity to criticism, guilt, shame, taking yourself too seriously, stuff like that. Really dig deep and be honest with yourself if any of that rings true for you

notme Experienced
notme
Posted

my blood test was negative, too. i had already been gluten free for awhile so it didn't surprise my doc. i got scoped and the dr said my duodenal folds were flattened - that was good enough for me. i had one more test to make sure i didn't have crohns or intestinal blockage, etc. as far as i'm concerned the diet is proof positive. the difference in how i feel is like night vs day. you can do it - you probably need to grieve. we all go through this and we're all here for you... it gets better. and there IS wine :)

SarahJimMarcy Apprentice
SarahJimMarcy
Posted

We're at about 2 months, too, and I have found this week to be really difficult. The breadsticks at Olive Garden looked so good and yet, I didn't like them all that much before! Don't beat yourself up. You realize that you feel better gluten free and you'll go back to it and stick with it.

Skylark Collaborator
Skylark
Posted

Two things come to mind. First, gluten-free is sort of a shock. Food is a big deal - it's essential for survival. Gluten foods like birthday cake and "daily bread" are also very much woven into our society. Many of the foods you're used to eating are gone and you have to relearn how to eat. You ARE in mourning. Go ahead and let yourself cry over the bread. You'll feel much better once you do.

Second, some people who have been sick for a long time are accustomed to being sick. You get well and it's such a big change you don't know what to do with yourself. As joej1 says, you may have some issues to look at that are keeping you from seizing the opportunity to be well.

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GFinDC Veteran
GFinDC
Posted

Here's another similar thread. check out BackTalk's post on what happened to her when she went off the diet. There are consequences.

Falling Off The Gluten-Free Wagon staying gluten free

LenaHyena Newbie
LenaHyena
Posted

I completely understand. I'm pretty new at this too, about three months for me and no diagnosis (doctors gave up on me) but gluten free has really improved all of my nasty body pain symptoms, my eating is normal, I just started marathon training, and I'm looking forward to a day when I'll be able to actually lose some damn weight.

But every time I pass that Krispy Kreme I want one. Or the cupcake shop, or even the bread on the table when we go out to eat with the family. It absolutely sucks. So far I've been able to resist, but I know that one of these days I'm going to break down and get that donut "just to see what happens" and it's going to be awful.

Don't beat yourself up about it. I think we all obsess about it a little. Just learn from the experience.

Lori2 Contributor
Lori2
Posted

After doing this for a year, it gets a bit discouraging at times. But I have had a few really good days with energy I haven't had in years. I see those days as the prize that will be mine when I have gotten rid of all the gluten and other stuff that cause me problems. And I intend to keep at it until that prize is mine--every day.

mamaw Community Regular
mamaw
Posted

Krispy Kreme!!! Open Original Shared Link has a gluten-free clone that is very tasty....

staci002 Rookie
staci002
Posted
  • Author

Thank you all for your kind words and support. It really helps to know that I'm not the only one going through this. I just went to my doctor today and was explaining to her about how I feel. I told her that I felt much better being off the gluten but its so hard to stick with it. Her reply was "well I don't know if you have to go overboard with it, just stay away from bread, pizza, and pasta." Really??? This is the information she gave me?

Anyway, Thanks again. I really do appreciate the support :)

Lori2 Contributor
Lori2
Posted

And after a negative celiac test, the GI told me to eat what I want and just take Imodium. Thanks a lot--I don't enjoy feeling like garbage.

mamabear272 Explorer
mamabear272
Posted

I'm only about 2 weeks into being gluten-free but I feel so much better! I had no idea how bad I felt till I felt better. I really can't imagine going back to gluten. I am so happy right now there are times I feel like crying tears of joy! I mean that literally! I have literally had to hold back tears. Knowing that there's a reason that I felt like crud all the time and that I wasn't just crazy is amazing! Also, did you know that if you don't follow gluten-free that GI cancer can be the result? I'm not willing to take that risk.

ndw3363 Contributor
ndw3363
Posted

I totally understand the mourning process. I too don't have an official diagnosis - and I did "test" it a couple weeks ago. BIG mistake - but one that I'm glad I made. Now every time I get the urge to have "just a bite", I remember how awful I felt for over a week. Just not worth it. Sure bringing my food and having to plan ahead ALL the time is really frustrating, but it's better than being in severe pain and having no control of my emotions. That was the scariest part for me - I was falling apart and couldn't do anything about it. Once the gluten is out of my system, I'm sane again. So weird, but so nice to FINALLY know what was going on all those years when drs just threw anti-depressants at me. I will never be medicated again.

Goof Rookie
Goof
Posted

I'm about 3 1/2 months in, and went through the same thing. I got really angry about it. So much, that I didn't want to even be around myself! But I just kept reminding myself of the benefits, and the progress I'm already making. It didn't make me less angry right away, but it at least helped me to deal with it, even if I was unhappy about it. I've gotten probably about 25-30% of the weight I lost back, which is great!! I feel better, look better. And those are the things you need to keep telling yourself. You won't feel happier right away, but you will start to see a change in your attitude over time. It's like a habit, it takes time to get the mental things and attitudes down. If you focus on what you've lost in your diet, you're doomed. Focus on the positive. I have definitely noticed that mindset is critical to succeeding gluten free. And don't worry about how you feel right now. We've all been there, and have gotten through it. You will too!!

Noomers Rookie
Noomers
Posted

I highly recommend joining a celiac support group. There are a number of people in mine that don't have positive blood tests. It's nice to know you're not alone and there is a lot to be learned.

Adrienne2823 Newbie
Adrienne2823
Posted

I highly recommend joining a celiac support group. There are a number of people in mine that don't have positive blood tests. It's nice to know you're not alone and there is a lot to be learned.

I second that! If there isn't one, it is VERY helpful to have a support system (family, friends etc). After a year I still have issues with some family members, and I have difficult days still. I remind myself how much better I feel and how much more I can do with my life now, now that I don't live on the toilet... :blink:

The first couple months were pretty rough for me too. Starting to heal and learning how to eat in a whole new way, it was tough! Now I don't even look back...sure there are some foods I missed but I have found many great alternatives and some are better than the original!

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      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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