Is This Normal?

[lauren327]

hello all!

i've been reading these message boards for the last few months and they have been very helpful. now i have a some questions that i hope others can help me with.

i'm 23 years old and was diagnosed with celiac disease in september, my mother has been celiac since 1997, so i guess it was only a matter of time before it would get me too! so here are my concerns:

1. i have been off of gluten for 2 months, yet i still feel sick to my stomach whenever i try to eat anything. this was especially true in the beginning when i was feeling really ill right after my diagnosis and i was afraid to eat because i didn't want to feel sick again. now i' m not eating as much as i used to because my appetite seems to have vanished. i don't know if this is more psychological than physical. like, i can't eat what i want (i.e. a sandwich, a cookie, restaurant food) so i don't eat at all. this is really starting to worry me because i'll only have about one meal a day and maybe a few snacks. i'm hungry but it's seems like a lot of work to find things i can have, so i just go with out. is this normal during the adjustment period after being diagnosed?

2. also, i seem to require a lot more sleep. i've always been a late sleeper, but lately i've been getting about 10 hours a night! i know that's partly due to me having trouble falling asleep, but i think that's too much. is this a problem anyone else has had?

3. my last question. as i said, my mom has lived with celiac for the last 10 years. she uses spelt flour to cook many of her cajun style dishes. when i was reading info on many celiac web sites, they say that spelt is not good for people with celiac. yet i'm not sure this has been scientifically tested and proven. my mom has never had problems with it. should i stay away from spelt or test it out? the only reason i ask is that spelt bread is the only one that isn't rock hard like all the other gluten free breads i've found! and i do miss my bread!

if anyone can share some useful information it would be much appreciated! hope to here from some of you soon!

thanks, lauren

[codetalker]

should i stay away from spelt or test it out?

Spelt will cause a gluten reaction. I know this first-hand.

[mamaw]

Hi Lauren & welcome

It does take some time to really start to feeling better. Being tired is just one thing that alot of celiacs feel. You said your mother has been celiac for 10 years. Does she not eat any breads? You said you have not been eating as much & missing sandwichs & so on. I eat everything pretty much as I did before - just without the gluten. I'm never hungary except when I'm to lazy to scratch cook..... I know it is easy to become scared to eat for fear of getting really sick. I find I don't eat as much either but I'm not craving anything either, my appetite seemsto have slowed down & I eat less....

Spelt contains gluten & it is not on the okay list for a celiac diet..It may not be causing your mother any problems that she can see but it may be causing internal problems that may kick in down the road. I thought it was okay at the beginning to but found out the hard way it is not okay.I actually liked spelt.

There are so many good products on the market these days for the celiac diet. Do you like to cook & bake?Annalise Roberts has a wonderful cookbook as well as Mike Eberhart's Gourmet Desserts...

Remember that gluten is hidden in just about everything on this planet. Even when it says wheat free it still may contain gluten. If you see gluten free then its safe.

If you are missing some cetain food item please let me know perhaps I can steer you in the right direction on finding a gluten free one.

Please feel free to PM me anytime if I can help you.

blessings

mamaw

[happygirl]

Spelt is WHEAT free but not GLUTEN FREE. She is NOT adhering to a strict gluten free diet! Do not eat anything she makes if she continues using it. Many uninformed but well meaning people say that spelt is safe, but it is not, not, not, not safe

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Just because your mom has not overtly reacted to spelt does not mean that she is not having celiac damage. There are many "silent Celiacs" who have no outward symptoms, but the damage is still being done. Just going on "reactions" is not a fool-proof way to know if you are doing well on the diet. It can help, obviously...but its not the end all to be all.

But anways, welcome to the board! I was also dx'ed at age 23, and am 25 now. I slept a lot...your body is still healing. Plus, because the learning curve is so steep, you may be trying to heal but you might still be ingesting gluten from hidden sources. It can take awhile...I know, that is frustrating to hear, but it is a normal progression. Are you careful about cross contamination? What types of things are you eating, when you do eat? Where do you live-do you have a whole foods near you?

Have you tried tinkyada (rice) pastas? They are great (I am a picky gluten free eater!) and I use it in all my pasta recipes. I had chicken tettrazini and brocolli last night for dinner, with ice cream for dessert.

Let us know what we can do to help!!!! I know this is overwhelming and frustrating. PM me anytim.

[Sinenox]

Hey Happygirl -

I just wanted to thank you for posting this because I'm in almost exactly the same boat - 22, recently diagnosed, no appetite...except that I don't have time to sleep that much. I'm usually lucky if I can manage 7 hours. I've always had trouble sleeping but recently a lot of my peers and professors are asking me what's up. I'm hoping after finals this'll get better but like you I'd really like to know how long this stage is going to last. Also my weight has been jumping all over the place and sometimes I eat meals I know are gluten free and still have a reaction. Is this going to end?

[happygirl]

hey there

i notice you have "heriditary celiac disease" in your profile..what do you mean by that? (sorry, just trying to clarify, since having a family member with celiac does not mean that you have or will have celiac). if you haven't been diagnosed officially, you can't really know if you are a true celiac (celiac actually refers to villous atrophy the small intestine, which is a clinical marker of celiac). I'm not saying you don't have it, but you may be non-Celiac gluten intolerant instead of Celiac.

I was in my first year of graduate school when I got sick....sick from dec-aug before i got dx'ed...and then took awhile to get better. I was actually in the PhD program and had to drop the PhD part...only stayed for my masters. I was sick and flat out told my professors I was, and I got their support. I graduated in 2005 with my MS.

If you have only been gluten-free for 2 months, you are probably still healing. I know, it sucks! but it usually can take awhile. how careful are you at home? what is your risk of cross contamination? do you read every single ingredient? do you have pets-do you wash your hands after feeding them or giving them treats? are you eating out? (i'm not being nosey for my own good...I'm asking in the hopes of trying to help see 'how' gluten free you are!)

hang in there. keep sleeping. learn to say no. (i am an overachiever and it was the hardest thing to do, to drop classes, and then drop out of the PhD program at 23. I had never said no to anything in my life!) but YOU have to be ok. NOTHING else matters, no degree, no nothing, if your health is failing. I didn't take it seriously and tried to plug on...I look back and realized I tried to hard to please everyone when I was so sick, when I should have been focusing on myself.

what else can we do to help?

[Guest cassidy]

I does take time to feel better. Are you sure that you have all the gluten out of your diet. I'm sure you know from your mom that there is hidden gluten in all sorts of things. It took me 2-3 months to stop glutening myself regularly and find everything.

I have a tough time eating a lot. My stomach hurt all the time in the beginning. You might try taking something for that. Probiotics are very good for us. Digestive enzymes help you digest your food better. Aloe is great if your stomach is irritated. I started on all those and my stomach hurt less when I ate. Also, I found I had other intolerances so I kept a diary and cut things out when they made my stomach hurt and that really helped. I was surprised and saddened at how much tomatoes bothered me.

I don't like meat and always ate pasta before being diagnosed and it took me a while to find a good substitute. I usually go back to my old favorites when I don't want to eat. If I only want pasta then I just make some Tinkyada. I'm sure it would be better if I could choke other things down but most of the time I would rather starve than eat meat or something I don't want if I just don't want it. You can find substitutions for things you used to eat, but it can take trial and error which doesn't help when you want it now!

I do drink Boost everyday - I find it is easier to drink than to eat and that has a lot of vitamins and protein - you might try that. Carnation instant breakfast is another good way to drink vitamins. Naked juice also has a protein drink that is ok.

[Sophiekins]

Hi Lauren, welcome to the board.

Spelt is primitive wheat - big on the no-no. 'Nuff said.

As for the not hungry: you won't get hungry. You may never actually get hungry again (six years later, I'm still waiting). You don't mention how you were diagnosed, but your body has been starving slowly since you started to get sick (and maybe before). This means that, like a famine victim, your body has no idea what normal people think is an appropriate caloric intake. . .it has been making do on just a little for so long that it figures this is normal. But just because you don't get hungry, doesn't mean you don't have to eat. (This is one case where you can feel free to ignore the "eat when you're hungry" crowd. . .if you follow their suggestions, well, you know because you're doing it. . .). What you need to do is start eating small regular meals - high in protein and vitamins (B vitamins, thiamin, folic acid, zinc, magnesium, iron, etc) - to teach your body that food comes regularly, is in abundant supply, and isn't going to disappear anytime soon. This will help your metabolism recover, as well as replenishing your body's nutrient stores - don't be surprised if you gain some weight in the next couple of months, relax. . .it's just your body's natural insurance policy. Find out your ideal weight and try not to let the weight gain be more than 10-15 pounds over that. . .this will come off eventually when you are feeling good enough to want to exercise. Believe it or not, the nausea is your body trying to tell you it's hungry. . .it just hasn't figured out yet how normal people do it. Sweet or plain will go down best - try gluten-free crackers or cookies (if you're up for a bit of cooking, try mixing a cup of rice flour with a quarter cup of butter - use your fingers - and then four tablespoons of water, roll it out on plastic wrap or wax paper - use more rice flour if it starts to stick - spread with gluten-free jam and roll off the plastic wrap into a kind of jelly roll. Bake at 350 for 15 minutes and enjoy. . .sweet and almost flaky. . .dead easy and hits the spot). Once you start eating, you should start to sleep better (and therefore less). The first few months (longer if you've been very sick) will be kind of detox, uncomfortable, but it will pass, trust me.

Oh, and you'll probably never eat as much as you used to, just make sure you're getting enough to stay healthy. . .the average female office worker/student needs about 1200-1500 calories a day. (It's okay. . .you can work up to that over a couple of months). If you continue to have trouble (or can't coax yourself to eat more than 1000 calories a day) you need to call your doctor and stomp your feet until you get a referral to a qualified and experienced nutritionist who can help you figure out a diet that will work for you. Most people count calories to lose weight. . .most celiacs count them to maintain it. . .funny, no? (But then again, most celiacs firmly believe in the oracular qualities of their poop, so I guess we're a slightly kooky bunch to begin with. . .)

Hope you feel better soon - and ask if you need some support. . .that is, after all, what we're here for.

[Sinenox]

Thanks for responding!

I did make an assumption. A couple of my grandparents discovered (the hard way) that they have Celiac disease and they've been tested and confirmed. I was always told that it was heritable and so when it became pretty clear that I either had a gluten intolerance or celiac I assumed it was Celiac. I'm not really in favor of undergoing those tests just to change my title so perhaps I should stick to Gluten Intolerant but I was told that I was almost certainly a Celiac.

I had a lingering feeling that there was a problem for a long time - lots of symptoms. But it took camping in rural Ethiopia to make me sit up and pay attention. I was eating wheat pasta and wheat bread every day with tea. After a few days I could barely put one foot in front of the other. The professor I was doing research for had kids who were severe celiacs and if I hadn't made that connection I don't know where'd I'd be.

I went off of gluten and dairy when I came back to America in August, two months later (October) I tried wheat again and had a very bad reaction. I've been gluten free ever since and I've been able to take dairy back up without incident. When I first went gluten free I felt alive for the first time in a long time. My quality of life was ten fold better. I still feel better - more aware, more energy, no sickening death hanging over me...but I'm going up and down now. I wake up one morning and I've got a lot of bloating and a lot of water weight suddenly, and the next day I'm feeling great and my symptoms have vanished. But I've eaten the exact same leftovers both days. When it comes to the diet I'm incredibly obsessive. I already wash my hands too many times a day, I check every label at least twice against the list. I do eat out but I talk to the people and for the most part only eat things that I know must be gluten free or that I've confirmed are gluten free (like salads). It's just strange that my fuzzy-headedness comes and goes as does the water weight and fatigue. I can only figure that something is comtaminated. Maybe after break I'll check through everything all over again. Maybe it's soy? I have relatives who have problems with that too.

I just don't know what to think. My immediate family is very much unsupportive and my room mates don't mind but don't go out of their way either. Your help would be very much appreciated!

[CarlaB]

for the most part only eat things that I know must be gluten free or that I've confirmed are gluten free (like salads).

If you eat salads at restaurants, be careful! My son worked at a tea shop that served a lunch menu. The sandwich and salad prep area was shared! He said that even though the salads were gluten-free, there was no way they would not be contaminated.

I'm gluten intolerant and use the terms, gluten intolerance, celiac, and wheat allergy interchangeably depending on the circumstance ... and I do not have celiac disease. Since gluten makes me as sick as a celiac, I think it's appropriate to use the word celiac at times, though now that I've been diagnosed with Lyme, I find I use it less and less .... mainly only at restaurants (I only eat where there is a gluten-free menu or where the specialize in serving food to those with allergies).

[Hells Bells]

The nausea could be a psycological and physiological thing. You are still healing but not eating is a way of you taking control in a way.

Try identify when you feel most nauseas and not nauseus and try and eat at your best times or try taking a safe brand of gravol half an hour before meals. Also my nutritionist told me its a good idea to eat at least every four hours, so plan some nutritional snacks between meals. You may find that eating regulary helps with the fatigue as it will help balance your blood glucose. I understand that hypoglycemia is another feature of celiac.

hope this helps.

[Guest cassidy]

If you eat salads at restaurants, be careful! My son worked at a tea shop that served a lunch menu. The sandwich and salad prep area was shared! He said that even though the salads were gluten-free, there was no way they would not be contaminated.

I completely agree with this! Every time I have tried to eat a salad I have gotten sick. It seems like it is much easier for them to make food in a separate pan. Also, most of the time the servers or low-wage kitchen workers make the salads. There are usually croutons or bread or desserts around. I feel much more comfortable having the chef prepare/supervise the preparation of my meal than to have a kid pull some lettuce out of a bin with a hand that has touched who knows what.

[Guest cassidy]

I completely agree with this! Every time I have tried to eat a salad I have gotten sick. It seems like it is much easier for them to make food in a separate pan. Also, most of the time the servers or low-wage kitchen workers make the salads. There are usually croutons or bread or desserts around. I feel much more comfortable having the chef prepare/supervise the preparation of my meal than to have a kid pull some lettuce out of a bin with a hand that has touched who knows what.

I thought back about what I wrote and I just wanted to make sure that it didn't sound snotty. I waited tables and bartended in college and I think it is one of the toughest jobs anyone can have. I think it builds so much character that I hope my kids will do it just for that reason. That being said, when I was waiting tables I know I didn't wash my hands as much as I should and I don't know how seriously I took special requests and I'm afraid other young people may be the same way.