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Really Struggling With The Loss/change

fnord

By fnord
in Coping with Celiac Disease

Recommended Posts

fnord Rookie
fnord
Posted

My awareness of a possible gluten/wheat intolerance finally occurred in August 2007 after four years of increasing, nagging symptoms. For me it was simple - I did a 10 day gluten-free test and the results were obvious. Since then I have been constantly conscious about gluten/wheat consumption and have cut it down dramatically, but here and there I will slip...have a few beers, a couple flour tortillas, some pretzels. I always pay the price - often within minutes of eating I know I've screwed up and I just deal with it. My symptoms are not nearly as bad as others I've read about here on the forum - no major pain. Just terrible bloating, loose stools, ragged fingernails (very recent - getting worse), and a dragging fatigue that is ruining my livelihood. My husband is disrespecting my suspicions and not helping whatsoever. It totally sucks and is changing our entire lifestyle. He thinks it's "something else". What? The cause/result is so clear! Just this past weekend I screwed up again, had a small handful of peanut butter filled pretzel snacks and the agony hit me within 30 minutes and ruined my entire day. I don't need to give any details because I'm guessing most of you know what it's like. Today I had a handful of plain peanuts and the same agony hit me within minutes, so now I'm even more freaked out. Peanuts too? Or was it something else? Arrrrrrrgh.

When I make a point to really be gluten-free for several days or weeks at a time, the results are clear. No bloated abdomen, higher energy, better mood. Then sure enough something comes up and I slip - a couple beers, a burrito, whatever. Sucks.

Is anyone else struggling with the "change"? I guess eventually if it gets bad enough I'll avoid wheat for good.

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samcarter Contributor
samcarter
Posted

Yep, it's hard. Hard to accept that a food that so many others can eat without difficulty (seemingly) can cause us so much difficulty.

Remember that not only are you causing yourself immediate pain and discomfort when you eat gluten, but you may also be damaging your body in ways you can't see. Your fingernails and fatigue point to vitamin deficiencies; as long as you're still eating gluten now and then, your intenstines can't heal and absorb the vitamins you need to get better.

I'm sorry that your husband isn't supportive. The only suggestion I have is to simply look out for your own diet, maybe research and find some delicious, naturally gluten-free meals that you both can enjoy, but don't say they're gluten free. ;) My husband's favorite meal is roasted chicken, potatoes and veggies. All gluten free. Make sure you have snacks you like on hand, and again, just look out for yourself as much as you can.

ang1e0251 Contributor
ang1e0251
Posted

Watch out for those peanuts! My husband was buying me peanuts this week and he said the Aldi and Walmart house brand both had wheat in them! He bought me Planters which were gluten-free but I'm disapointed to see they have MSG which I try to avoid. They do taste good.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I have an dh who is not supportive also. I decided my health was important. I now have an almost gluten-free kitchen. The only wheat items are dh bread for his lunches and his Little Debbie cakes. I do NOT buy his bread or his "poisoned" treats. I do not make his lunches. Told him I would be glad to if he wants it gluten-free.

I cleaned out a cabinet for his items over a small counter. He makes his lunches on that counter. I do not even wipe that counter down. His lunches, his clean up.

It works for us because I do all the cooking. If he wants to eat, he can eat gluten free or go out. I decided if he did not respect me enough to help with my dietary restrictions, I would make my kitchen as gluten free as I could for my health.

I'm not gluten free because I THINK I should eat this way. It's a lot of trouble but I feel so much better. I use to cheat but finally went totally (as possible) gluten-free. I feel so much better it's worth the trouble.

When and if I think about cheating, I remember my first patient as a student nurse. She had part of her small intestine removed due to cancer. If you think about cheating, just take a look at a colostomy and think about if you'd like that on your stomach. Works really well for me.

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Lost Scribe Newbie
Lost Scribe
Posted

I feel your pain! Within two weeks of trying a gluten free diet, I realized there was no going back for me. What had started as an experiment became very real when I first "cheated" and got very sick. Apparently I'm one of those people with extreme symptoms.

For awhile I got really depressed and bitter about what I saw as a forced lifestyle change. I found relief in education. The more I learn about what I CAN eat, the less I worry about what I can't.

ranger Enthusiast
ranger
Posted

At first, I pined over donuts. Then, I learned to make gluten-free donuts. Gluten is poison to my system. I refuse to eat it. My husband is on the gluten-free diet, because I do all the cooking. He has no choice! But he does have his bread and little debbies for his lunch.. It gets easier, but you almost have to do a lot of cooking. Either that or get stuck paying exhorbitant prices for inferior food. Last night, I made beef pot pies. Made a beef stew out of leftover pot rst, potatoes , carrots, peas. and gravy, topped with a gluten-free biscuit topping ( from a mix). It was good, cheap, and gluten free. And DH loved it! Don't fall to the temtations of gluten. There are a zillion good things to eat that are gluten free. Susan

spinsterwitch Rookie
spinsterwitch
Posted

It is always a challenge, but here's a response I've come up with to help my "internal doubting Thomas" remember why I'm doing this.

Do you remember the novel "Flowers in the Attic?" In it the evil grandmother brought the children being held prisoner a wonderful "treat" : powdered sugar donuts. This "treat" became a regular and all the children started getting slowly sicker and sicker. (Now that I think of it, many of the symptoms were similar to Celiac/gluten-intolerance.) When one of their siblings died, they discovered that grandma was lacing the donuts with small amounts of arsenic. Eating gluten for me is like eating small amounts of arsenic. It's going to make me sick, and if I do it regularly it will kill me.

The question you have to ask yourself is, if you were offered arsenic laced donuts would you eat them? If not, why are you essentially doing the same thing to your body by continuing to eat gluten?

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skyyblues Newbie
skyyblues
Posted

I really like your reference...That is how I am looking at everything these days. My family looks at me strange and I think they think I'm paranoid but they don't have the issues I have been dealing everyday. "I think they think" I am paranoid aren't I! LOL That is ok as it beats the heck out of getting sicker and not being able to point to "one" thing that is doing it. It seems as if each day I put more pieces of the puzzle together...

D--- steroids I am ramblin' again.....No more poison donuts for me, I will read and check, no more gluten for me!!! :D

sneezydiva Apprentice
sneezydiva
Posted

I'm so sorry your husband isn't being supportive, I know that must be hard. My husband was very supportive, but it was still hard for him, not so much eating at home, he'll eat whatever I make, but it curtailed our eating out, and he likes to go out. One thing we did was start taking ballroom dance lessons. It gets us out of the house and socializing, but it doesn't revolve around food.

fnord Rookie
fnord
Posted
  • Author

Thanks for all the great input - I've been getting all the replies via email. Like others have also mentioned, I get crap from my husband about my suspicions...the whole "it's all in your head" deal. The last thing I want is to be the center of attention, get special treatment, whatever. The loss of so many food items is a huge blow to me, changes a lot, and he thinks I'm just trying to invent some ailment that he thinks doesn't exist. My husband is a bread baker and brings lots of day-old breads home. Now I can't touch them. I have heard of celiac disease for years, but it took me four years to finally pinpoint what might be causing my problems.

I MISS BEER!!!

fnord Rookie
fnord
Posted
  • Author
Watch out for those peanuts! My husband was buying me peanuts this week and he said the Aldi and Walmart house brand both had wheat in them! He bought me Planters which were gluten-free but I'm disapointed to see they have MSG which I try to avoid. They do taste good.

The peanuts I mentioned were plain roasted peanuts from Trader Joe's. I looked at the ingredients and they add vegetable oil and salt. Not sure what caused the distress there. Last night I had a bowl of peanuts in the shell and I was ok.

skyyblues Newbie
skyyblues
Posted

I understand what you mean. He thinks some doc will just give me a special shot and I will be fine. He doesn't get that this is now my life. I went through cupboards today and gave myself a little corner where I now keep my stuff. I don't like having to look through everything to find something I can eat. He just kind of rolls his eyes... I don't care anymore as I need to be concerned about my healh.

I agree about the center of attention thing too. I have been wearing little white gloves for almost 2 yrs - I do a great mime imitation - and now have to take my food everywhere I go... I am thinking maybe I will invest in some unusual hats and loud plaid and/or floral print clothes. If folks are going to look I might as well give them something to look at!! :D I just keep telling myself it could be worse...

I also had bathroom issues today. Not sure what I got into, as I am being so careful. I have to keep reminding myself that this is a long process. The healing doesn't happen overnight. I have a dr appt tomorrow and going to talk to him about getting off the steroids again! Otherwise I want him to write a note that I am not responsible for my actions as I may hurt someone.....lol..

Take care and I want to thank you for sharing. It helps to know you are not alone..too bad we couldn't have had something better in common..lmao By the way Tequila, Rum, and Potatoe Vodka are OK!!!!

fnord Rookie
fnord
Posted
  • Author
By the way Tequila, Rum, and Potatoe Vodka are OK!!!!

And wine! I'm not a huge fan of liquor, but since cutting out beer I've grown fonder of wine.

I have a friend my same age who is also suspecting a wheat intolerance and has been gluten free for several weeks now (with major improvements noted). He's REALLY struggling because he was allergic to grapes/wine to begin with and now has cut out beer, too. Big bummer.

skyyblues Newbie
skyyblues
Posted

I can't drink wine either. I am not a big drinker but once in a while it is nice to have one. I have also noticed that when I have a drink I seem to flush so should probably put that on the back burner for now too... Anything else I can give up...I am starting to feel like a Catholic stuck in Lent forever....

Miss Abi Newbie
Miss Abi
Posted
I feel your pain! Within two weeks of trying a gluten free diet, I realized there was no going back for me. What had started as an experiment became very real when I first "cheated" and got very sick. Apparently I'm one of those people with extreme symptoms.

For awhile I got really depressed and bitter about what I saw as a forced lifestyle change. I found relief in education. The more I learn about what I CAN eat, the less I worry about what I can't.

Hi, I am really pleased I have stumbled across this website! I thought I may have been the only one who is struggling to come to terms with being a coeliac. I was diagnosed about 6 months ago - at the time it was a mild relief because I had been suffering with seemingly random skin reactions which were sometimes very painful. It was good to know what was causing the reactions so I could make them stop. But in reality, now that 6 months has passed, I am struggling with the whole concept. I have become super super sensitive to gluten - so even a single bread crump amongst my food can trigger a reaction - and the reactions are worse. So now I almost feel trapped. I feel like I am obsessing with my food - who is making it, where has it come from, has the cook washed his hands etc. I get really down and feel that no-one understands. My family are supportive and my boyfriend is excellent, but even so I feel like I am on my own. My mum is also a coeliac but is lucky enough to not have reactions, so she does not understand and has accused me of being a hypochondriac, which makes me crawl into my shell and keep quiet about how I feel. But then I bottle everything up and have a big downer. Does anyone have any recommendations?

skyyblues Newbie
skyyblues
Posted

Hello and Welcome! I am new too. I understand what you mean about being obsessed. I have gone so far as I will not eat anything right now that I do not make myself or is clearly labeled. It seems that since I have been off gluten my reactions are worse also. Thought it was just my imagination.... <_< I got poisoned yesterday and have no clue. The only thing I can think of is that I was cleaning out and organinzing my cupboards - my food - bad food... I would just like my skin to clear up and get off steroids long enough to determine what my threshold is. Sometimes it feels like I'm in a box and the walls are closing in.

My only upside, it is a big one, is that I have finally found a doc who does not think I am nuts. :D I scared him last week when I was having a very bad reaction. He made me go back on the steroids as there was no other option except to be admitted to the hosp. I was surprised when he came back in the office with a camera to take pics of me. He had already sent me to a GI who is doing my scopes on the 12th. I am unable to be on gluten for the biopsy but don't care. It will at least rule out any other issues that might be in there.

After talking with my mom yesterday I even have a few more puzzle pieces that fit together. She is going to get tested now too.

After all my ramblin, I just wanted to say you are not alone...You have to focus on yourself and getting to a point where you are comfortable. At least that is what I am searching for. I think we will always have to look for the crumbs but they will get more "managable" with the more we learn. At least I won't have to worry about having a bad meal anywhere as I intend to bring my own. Chin up as we are at least we are on the right path, no matter how many speed bumps it might have...

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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