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knitaddict

By knitaddict
in Coping with Celiac Disease

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knitaddict Apprentice
knitaddict
Posted

When I first went gluten free...about 2 weeks ago???...maybe?? I was feeling better right off the BAT. Now, I'm not feeling so great.

I'm so sorry to do this to the guys out there....but could it be my....ahem...monthly??? Does THAT cause some of you to flare up again? Or is this just my Crohn's talking back to me???

Argh...I'm so SICK of being SICK!!!!!!!!!! :angry::angry::angry:

Ok, sorry...just had to vent there for a sec. Thanks. *sheepish face*

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curlyfries Contributor
curlyfries
Posted

Two weeks isn't long enough to expect to be completely symptom free. Some people take months, or even longer. It's also very likely that you've inadvertently been glutened. It takes a long time to get the hang of it. We've all made mistakes in the beginning.......and even months or years later, still occassionally miss something. Another possibility is that you have other food intolerances. Many of us can not tolerate dairy in the beginning, until the intestines heal. Others have problems with soy, also. For me, it's dairy and sugar. And one more thing. In the beginning it is best to keep to a simple diet.....plain meat, fruit and veggies. Those gluten free breads can be hard on the tender stomach for a while.

Hope some of this helps. :)

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Jestgar Rising Star
Jestgar
Posted

Your visitor could be making things worse. It's big upheaval and rearrangements of hormones. Hopefully if that's the case it will stop doing it.

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Sinenox Apprentice
Sinenox
Posted

It really is a rollercoaster ride. It's even harder to remember that when you feel great 3 months in and then crummy 1.5 years in, yet again. It takes time. This was the very hardest part for me - accepting that yes, it really was going to take more than 2 years for me to feel truly better. It was particularly hard because there were a lot of inexplicable ups and downs in between that nobody told me about, it wasn't an even gradient from worse to better. The trial and error with a lot of food doesn't help either. Stick with it and always investigate first, it may be a bad batch of questionable food after all. It's a good excuse to take time out for you and invest in things that bring you pleasure or solace, create rituals that will make you feel better. Having a plan for when you get glutened or feel really crappy is always preferable.

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knitaddict Apprentice
knitaddict
  • Author
Posted

Thanks...I don't mean to be whining and complaining...I just think that the false hope (AND hormones!) probably got to me this week. I think that when I felt better right from the start, it lulled me into this sense of security....I was like, "YES! This is IT! I'm finally going to get BETTER!" Only to have whatever happened....be it accidental glutening, hormones, need more time...etc...whatever it was or IS....happen AGAIN. Ugh--I'm just so ready to feel better.....but I need to be counting my lucky stars that I'm not like some of the others on here. I read that with most people, it takes about 10 yrs to get diagnosed......I started feeling bad in January of this year and had a dx by this summer.....so I'm lucky and I just need to remember that.

Ugh---hormones! :angry::rolleyes:

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kbtoyssni Contributor
kbtoyssni
Posted

Hang in there! A little more time is hopefully all you need. I also felt immediately better after going gluten-free, but had bad days here and there for the next few months. Your body's been through a lot with the celiac and will need some time to get back in tip-top shape.

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henny Explorer
henny
Posted

hey I'm right there with ya sweetie!

I'm 3 weeks in and jumping at shadows also.

hang in there!

some of it could be crohn's related....I don't have that but I'm intimately familiar with it (husband has had it for over 20 years)

all you can do it sit tight and stick with it! everyone will always have some bad days.

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heiko.d.26 Newbie
heiko.d.26
Posted

I completely understand you - being patient is a hard thing for me too!

It's like you are drowning there in the water and you see the rescue boat approaching in the distance but the damn thing is just getting closer really slowly...

Stay strong and hand in there - it will pay off for sure! :-)

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Treen Bean Apprentice
Treen Bean
Posted

It took me 1 year before I could handle any dairy, and two years before I was able to gain back the weight I lost. I completely understand the "sick of being sick" feeling. It will go away. I promise.

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knitaddict Apprentice
knitaddict
  • Author
Posted

Thanks guys...an update...I've backed off a GOOD BIT on the milk...no more cereal for now...I just use milk IN things...and it seems to be helping.

As a sidenote...I would like to share with you the dangers of buying cheap toasters. :rolleyes: So I went to Dollar General and bought a $5 toaster for my Kinninnick bread...(to which I've quickly become ADDICTED)...I popped my toast in this morning and went to go get my daughter out of bed. When we got back into the kitchen, it was FULL OF SMOKE and that smoke was POURING out of the crappy cheap toaster. <_<

Needless to say, it ruined my obscenely expensive Kinninnick toast. :angry:

Lesson learned: Do NOT put obscenely expensive toast into a horridly CHEAP toaster....you will NOT like the outcome.

The DOG wouldn't even eat the toast. :angry::lol:

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ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks guys...an update...I've backed off a GOOD BIT on the milk...no more cereal for now...I just use milk IN things...and it seems to be helping.

As a sidenote...I would like to share with you the dangers of buying cheap toasters. :rolleyes: So I went to Dollar General and bought a $5 toaster for my Kinninnick bread...(to which I've quickly become ADDICTED)...I popped my toast in this morning and went to go get my daughter out of bed. When we got back into the kitchen, it was FULL OF SMOKE and that smoke was POURING out of the crappy cheap toaster. <_<

Needless to say, it ruined my obscenely expensive Kinninnick toast. :angry:

Lesson learned: Do NOT put obscenely expensive toast into a horridly CHEAP toaster....you will NOT like the outcome.

The DOG wouldn't even eat the toast. :angry::lol:

That's the worst, having toast ruined that cost almost as much as the toaster! I love that bread too, and the pizza shells are great, once you can get past the cost.

Have you tried any of the nondairy milks? Rice milk is good (Pacific is safe but not Rice Dream) and the vanilla flavors are great for baking, chocolate almond milk is really nice also. It got to pricey for me though as it was so good I would go through a little four pack in a day. I now just use gluten-free chocolate syrup in rice milk, much less expensive. Also real butter is low in casien and in lactose and makes a good choice if soy is an issue as there are pitifully few butter subs without some form of either soy or casien.

Cutting dairy can really speed up the healing and many are able to add it back in after a while.

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climbmtwhitney Apprentice
climbmtwhitney
Posted

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knitaddict Apprentice
knitaddict
  • Author
Posted
Needless to say, it ruined my obscenely expensive Kinninnick toast. :angry:

Lesson learned: Do NOT put obscenely expensive toast into a horridly CHEAP toaster....you will NOT like the outcome.

The DOG wouldn't even eat the toast. :angry::lol:

You crack me up!

Just sharing.....When my daughter and I went gluten free 2 1/2 months ago we felt SUPER for a week or so. 5 days for my DD and 9 for me. Then, we felt just horrible. I posted here too, just like you, to try and figure out what was going on. It makes it hard to stay gluten-free when you're feeling crappy anyway, huh? The members that posted back said basically the same thing as my doctor. Our immune system was going through die-off since it wasn't seeing gluten anymore. And, it just takes time to heal. Shay posted that it took her a full 6 weeks to feel better. So my DD turned the corner after a week of feeling awful. Now she feels spectacular. Maybe she'll grow! I'm still work in progress. But, I'll say this: I was better after I fully dropped the dairy about a month in. I knew it was a problem, but I find it SO much harder than losing the gluten. :angry: Also, I'm MUCH, MUCH better after I dropped the soy. Turns out that was a problem too. Who knew.

Hang in there. Definitely stick with it. I have more energy this week than last. I am getting better a little bit at a time and you will too!

Sonya

Ahaaa! I didn't know about that!!! Now things are starting to make a little sense. Oh, and I forgot...in addition to backing OFF on the milk...I also had my doc start me on a series of B12 shots...I think that first one might've kicked in yesterday......I kinda cleaned the @#$% out of my house!!! Ugh---and it NEEEEEEEDED it too! :P

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Wonka Apprentice
Wonka
Posted
Thanks...I don't mean to be whining and complaining...I just think that the false hope (AND hormones!) probably got to me this week. I think that when I felt better right from the start, it lulled me into this sense of security....I was like, "YES! This is IT! I'm finally going to get BETTER!" Only to have whatever happened....be it accidental glutening, hormones, need more time...etc...whatever it was or IS....happen AGAIN. Ugh--I'm just so ready to feel better.....but I need to be counting my lucky stars that I'm not like some of the others on here. I read that with most people, it takes about 10 yrs to get diagnosed......I started feeling bad in January of this year and had a dx by this summer.....so I'm lucky and I just need to remember that.

Ugh---hormones! :angry::rolleyes:

Whine and complain all you want. This is the place for it.

It took me 32 years to get diagnosed. I've been fully gluten free since November and I'm still stuggling. I don't know what I'd do without these forums to whine about it at, lol.

I have been reacting to soooo many foods right now that I am keeping it really simple so that my gut can settle down (I discovered that I have a problem with soy, I should have realized this earlier as I have a problem with all other legumes {darn this fuzzy brain} and I'm having to slowly go off one of my meds because of it). My doctor suggested that I take L-Glutamine at night to aid in the healing and, at a Celiac Lecture yesterday, the ND also recommended it as an aid to healing.

Yesterday, while out with a fellow Celiac, I was discussing how hard this is and what kind of symptoms that I was getting. She gave me a lecture about how people don't want to hear these things, that I should only be talking to my doctor about. Needless to say things didn't go well from there. I'm soooo sensitive right now, I am having all my gut/brain/joint issues from this, I'm going through a drug withdrawl and I have zero coping abilities right now. So this incident has made me even more grateful to all of you on line who take the time to respond and try to help. Thankyou.

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Jestgar Rising Star
Jestgar
Posted
Yesterday, while out with a fellow Celiac, I was discussing how hard this is and what kind of symptoms that I was getting. She gave me a lecture about how people don't want to hear these things, that I should only be talking to my doctor about.

She needs to be dope slapped.

Not only does "whining" help us clarify what things are really bothering us so we can start to address them, sharing information connects us with others that have the same issues, and maybe have found a way to fix them.

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