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Newbies: How Is Everyone Doing?


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#1 Emily Elizabeth

 
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Posted 18 June 2007 - 02:44 PM

I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.

I am still not right, but I have noticed that I am getting better. My hairdresser (who I hadn't been to in years since she moved) said that I had a lot of new hair growing in. I'm taking that as a good sign (though I hadn't realized that I had lost any hair).

My intestines are still not working properly (going at least 4 times a day), but I think I have figured out what happens to me when I am "glutened." So at least I know that I am not accidentally ingesting it on a daily basis (right?). When I went to PF Changs and when I had a bbq at my house I believe I was glutened because both times I woke up in the middle of the night and urgently had to go to the bathroom (2-3 times). So I think that is the sign that I was glutened.

People at work are saying that I look a lot healthier, etc. so that's good too. I'm no longer foggy at work, or extremely hungry. It seems to have balanced out a lot.

Anyway, I'd love to hear how all the newbies are doing and will always take any advice the veterans have to give!
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#2 kali_mist

 
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Posted 18 June 2007 - 03:57 PM

I'm pretty new myself, I was just diagnosed in March 2007. At first it didn't seem so bad, I never really like bread or anything anyway. But now that I'm realizing just how serious celiac is I'm starting to get really depressed. The fact that we have to look at everything like shampoo, makeup, soap, toothpaste, laundry detergent, is very overwhelming to me. And how even the smallest amount can do damage to your intestines. I can't even really tell when I've been glutened, I don't get sick like everyone else seems too. I cheated once just to see what would happen and nothing did. That kinda worries me because I could be getting glutened all over the place and not even notice. What's going to happen to me if I can't get completely gluten-free? I live with my fiance and a roommate and having to watch them eat whatever they want is making me resentful. Not to mention they are probably cross contaminating all the gluten-free food in the house. It just seems very hard to handle right now and I'm turning into an emotional mess. I hope the other newbies are doing better than me.



Julie
Edmonton, Alberta, Canada
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~Julie~
Gluten-free since March 2007
Allergic to: soy, peanuts, almonds, hazelnuts, and mustard

"The sweet is never as sweet without the sour"

#3 noglute

 
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Posted 18 June 2007 - 04:37 PM

hi,

I was just diagnosed with Gluten sensitivity in May 2007 & have been gluten free for about two weeks. My doc says blood work does not show celiac disease but I've been told blood work are not always acurate. I haven't noticed that much change, still have stomach pains, fatigue, brain fog, no energy..

not sure how gluten free I am though when you consider I use same pots/pan as everyone else in my house & not sure if my shampoo's & lotions are gluten free. right now it's overwhelming, I'm going to see my doctor tomorrow to just go over this & see what else he can test me for, what kind of damage gluten has already done.

Please advise what else I should ask my doc about or what other test I should get.

Thank You.


I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.

I am still not right, but I have noticed that I am getting better. My hairdresser (who I hadn't been to in years since she moved) said that I had a lot of new hair growing in. I'm taking that as a good sign (though I hadn't realized that I had lost any hair).

My intestines are still not working properly (going at least 4 times a day), but I think I have figured out what happens to me when I am "glutened." So at least I know that I am not accidentally ingesting it on a daily basis (right?). When I went to PF Changs and when I had a bbq at my house I believe I was glutened because both times I woke up in the middle of the night and urgently had to go to the bathroom (2-3 times). So I think that is the sign that I was glutened.

People at work are saying that I look a lot healthier, etc. so that's good too. I'm no longer foggy at work, or extremely hungry. It seems to have balanced out a lot.

Anyway, I'd love to hear how all the newbies are doing and will always take any advice the veterans have to give!


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#4 Crystalkd

 
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Posted 18 June 2007 - 05:26 PM

I'm starting on week 4 of the diet. I'm still figuring out what I can andcan't have.
I'm doing alot better. Now I just need to make sure all the gluten is out of my house. It is a little overwhelming to think I need to look at my makeup, hair care, and laundry stuff. I think all that is fine but to be honest I'm not sure. It's still tough to watch others eat things I can't have but I'm slowly getting over it. Although Saturday will suck. My friend is getting married and I won't be able to have a peice of cake. All in all though today has been decent.
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#5 zkat

 
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Posted 18 June 2007 - 06:36 PM

I thought I would post here, even though I am 6 months gluten free. Jan. I thought I was gluten-free, but seems I was gluten light-wow if I only knew then what I know now! So truly not gluten free until Feb.

Feb. I was OK with all of it, I was relieved to know what was wrong with me all those years. Still ate out way too much and took too many chances-this lasted until about March when I really started feeling better and then got glutened. Learned my lesson-no more. I made the switch to paranoid gluten girl and will eat it only if I can see it being made and I can verify it is Gluten free. Through April felt the best I have ever felt. I had a little set back at the end of May, Thyroid issues, but we are getting those under control.

I went through the whole mourning process, though I really didn't think I would because I never really was a big fan of bread type foods-they always made my stomach hurt. Now I am over that and have discovered the joys of gluten free cooking. I have made lots of meal substitutes that to me are better than the gluten counter parts. I have found I prefer my cooking to the prepackaged stuff, but I have always been that way. And I am not a fan of Chicken, though I eat it almost every day :huh:

So the moral to my long windy post it-hang in there, it gets better. I now have so much energy that I drive my poor ADHD husband crazy! Life is what we make it. This is so doable.

My substitutes list:

For shampoo, conditioner, lip balm, and lotion I use Desert Essence. The entire line is Gluten free and Organic

Make up is Bare Minerals. I hate make up anyway, so this stuff is perfect

Namaste is the BOMB! My family devours the brownies and I am the only one gluten-free

I can make better fried Catfish than any southern joint.

Redbridge Beer is better than no beer

Malibu Rum is Gluten Free

Whole foods hamburger buns are good biscuit substitutes.

Glutino Mac and Cheese is my fave!

Coconut flour pancakes are the best thing after a soccer game

We are very lucky to have the resource. I cannot imagine what is must have been like in the years before the internet!

Kat.
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#6 grey

 
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Posted 18 June 2007 - 07:08 PM

Hi, I'm starting on week 4 too. I'm inthe hospital for celiac complications (iv vitamins, additional tests, etc), since sat and they said a few more days. The gluten-free food part isn't bad, but I also have to be DF and maybe soy free. My neuro symptoms haven't resolved; one kind of D has stopped, but I still have a lot of gas, pain, & D (they're doing tests on that too). I'm still losing weight, the vita. iv & fluids are giving me a little more energy, but I'm sleeping a lot, and I still have the brain fog, pain, and dizziness.

I've been very strict with gluten-free food, meds, but I have a hard time figuring out cosmetics; I'm nervous about getting my hair cut! I was excited when I found out that Target's method cleaning products are gluten-free so I could keep those. I'm luck I live alone so xcontam. is not has hard, but it's lonely/hard w/o the support. (I got a cat-she's gluten-free too :) )

The gastro who did the biopsy made it sound so easy - just don't eat gluten - you'll be fine in 2 wks! <_< It looks like it might take more time than that. I'm still hopeful that eventually I'll feel not just ok but healthy, and I haven't felt that in a long, long time!:)
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#7 mee

 
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Posted 18 June 2007 - 07:39 PM

Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee
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#8 Piccolo

 
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Posted 19 June 2007 - 04:04 AM

Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee


Mee

I have found a good substitute if one is sensitive to chicken eggs. I eat duck eggs with no problems. That might be something to check into. They work just fine in baking. They are also richer tasting. I pay $6.00 per dozen.

Susan :blink:
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Dairy/Cesain free Oct. 2005
Gluten free June 2006

#9 gfmolly

 
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Posted 19 June 2007 - 04:10 AM

I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.


Hi,
I have been gluten-free for a month and a half....I have finally stopped making regular mistakes! That is probably the hardest part to figure out, what to eat that is safe! My family gets together alot, and eating at other people's houses has been challenging. I made a stupid error yesterday and will pay for it the next few days with d, but it is a good reminder!

I too am feeling healthier and am so happy to feel "normal" for longer stretches of time. I have stopped losing weight. I have a blood draw today to see if my iron levels have gone up, since I am anemic.

Any advice on taking iron? I was given a very pure for of iron from my doc, but it makes me feel horrible right after I take it. It's not glkuten-related. I think it could just be hard on my system??

Anyway, best wishes to all the newbies, and thanks to the vets for all of your help and guidance. It is truly appreciated!!
Terri
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Diary free 11/06-6/08
Now using a small amount of low-lactose dairy such as aged cheeses and yogurt. Yum!
Gluten-free since 4/07

"When you row another person across the river, you get there yourself."
- Fortune Cookie

#10 rinne

 
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Posted 19 June 2007 - 05:41 AM

Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee



Hi, Elizabeth on The View is a celiac and recently celebrated a birthday with I'm thinking a Baskin Robbins ice cream cake. You wouldn't be able to eat it but if your son can have dairy he could. :)
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A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#11 confused

 
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Posted 19 June 2007 - 05:45 AM

Hi im about 3-4 months gluten free, and i feel the best that i have in years. I use to be so afraid to leave my house and now i cant seem to stay home. I use to miss alot of school and family functions from the anxiety of not knowing what was wrong with me. I am now coaching my sons baseball team, I can now go to baseball and tball games for hours and not worry. I can now go grocery shopping and not have the need that i have to run out of the store. I can take my kids to whereever they have to go and not say, no we have to wait til your dad comes home to take you. My sex drive is even back to where it was 10 years ago when we met. Hubby really is happy about that lol

I use to want to hide in baggy clothes cause of my bloated tummy. Now i wear what i want and feel good in it. Im still not skinny, but im happy with who I am.

I dont wake up in the middle night sick anymore. I dont get up at 1 and 2 am and stare at the ceiling anymore, when i hit that pillow im asleep til 5 am. I have became a better cook, since i dont rely on packaged stuff anymore. I just wish i had more time to cook and bake. I can look at packages now and know what stuff can be gluten, i still have to look up a few things but not as often anymore.

I had to go gluten, casein and soy free to feel this good. Yes i sometimes miss that cheese, but i love who I am now and would never think about cheating. I have learned everything can be made like the real stuff it just takes more time and more ingredients.

So all of you still sturggling with the diet, just know there is a happy ending at the end. You will get better and if you are not feeling better just off gluten, try and take casein or soy out and see if that helps.

SO happy a poster before me said malibu rum is gluten free, I have wondered just never looked it up. I am going to go buy me some of that tonight with my cranberry juice. I cant wait.

One more thing, i feel like an little kid when i find out i can eat soemthing that i thought i would never be able to eat anymore. Little things in life now bring me such pleasure.

paula
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gluten, casein and soy free
on low carb/low sugar diet

#12 bakinghomesteader

 
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Posted 19 June 2007 - 07:10 AM

Hi, I am 2 weeks into the gluten-free diet. I feel really good. I challanged myself last Friday and had a reaction. Since then, I have been recovering from that gluten and am starting to feel good again. No more gluten for me, no sir. I did have a little pitty party about it. Got all upset and depressed. But I am ok with it now and realize it is what is best for me. I think it is even helping with the myasthenia gravis.

My husband was kinda put out by it all at first. He sure has come around. Thanks to those who gave me advice on that. He is now one of my biggest advocates. He sticks up for me at restaurants and makes them redo my meal if it is wrong. He likes to see that I am finally feeling better after so many months/years of not.

I am so grateful for this forum. I am glad there are people out there that want to help and know how I feel.

Bakinghomesteader
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homeschooling mom to 12 yr old son
helpmeet to wonderful husband of 13 yrs

dx Myasthenia Gravis 1998

Official Celiac dx 6/2008

Gluten Free since 6/5/07 (with the exception of 6 weeks and any cc)

Positive Enterolab Result 8/23/07

Positive bloodwork 6/2/08 after eating gluten for 6 weeks

#13 mee

 
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Posted 19 June 2007 - 07:32 AM

Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee


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#14 Guest_micah_*

 
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Posted 19 June 2007 - 08:13 AM

Hi, I am 2 weeks into the gluten-free diet. I feel really good. I challanged myself last Friday and had a reaction. Since then, I have been recovering from that gluten and am starting to feel good again. No more gluten for me, no sir. I did have a little pitty party about it. Got all upset and depressed. But I am ok with it now and realize it is what is best for me. I think it is even helping with the myasthenia gravis.

My husband was kinda put out by it all at first. He sure has come around. Thanks to those who gave me advice on that. He is now one of my biggest advocates. He sticks up for me at restaurants and makes them redo my meal if it is wrong. He likes to see that I am finally feeling better after so many months/years of not.

I am so grateful for this forum. I am glad there are people out there that want to help and know how I feel.

Bakinghomesteader


Hi, My name is micah,

I'm gluten free (I hope) for just 1 day. I made it 2 days before that, but then got glutened yesterday. I'm just learning what I can have, so I'm really on a limited diet right now...fruits, veggies, meat, dairy all with no additives since I don't know which additives contain gluten yet. I've been so sick for so long (9 years) - I always knew food made me sick but no idea what or why. Having been to so many doctors over the years with an IBS diagnosis and Chronic Fatigue Syndrome, Hypoglycemia, possible MS. Never have I gotten any help or any suggestions to check into diet. I went gluten-free for one month to try it out and my brain fog cleared and my legs (I have trouble walking) started gaining some strength. But I got off the diet to see what happened and didn't get back on until now a few months later. I instantly got all of the brain fog and severe fatigue back as soon as I went back on gluten. I'm hoping this will be the answer for me to feel better.

Nice to meet you! Micah
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#15 natalie

 
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Posted 19 June 2007 - 08:20 AM

I thought I would post here, even though I am 6 months gluten free. Jan. I thought I was gluten-free, but seems I was gluten light-wow if I only knew then what I know now! So truly not gluten free until Feb.

Feb. I was OK with all of it, I was relieved to know what was wrong with me all those years. Still ate out way too much and took too many chances-this lasted until about March when I really started feeling better and then got glutened. Learned my lesson-no more. I made the switch to paranoid gluten girl and will eat it only if I can see it being made and I can verify it is Gluten free. Through April felt the best I have ever felt. I had a little set back at the end of May, Thyroid issues, but we are getting those under control.

I went through the whole mourning process, though I really didn't think I would because I never really was a big fan of bread type foods-they always made my stomach hurt. Now I am over that and have discovered the joys of gluten free cooking. I have made lots of meal substitutes that to me are better than the gluten counter parts. I have found I prefer my cooking to the prepackaged stuff, but I have always been that way. And I am not a fan of Chicken, though I eat it almost every day :huh:

So the moral to my long windy post it-hang in there, it gets better. I now have so much energy that I drive my poor ADHD husband crazy! Life is what we make it. This is so doable.

My substitutes list:

For shampoo, conditioner, lip balm, and lotion I use Desert Essence. The entire line is Gluten free and Organic

Make up is Bare Minerals. I hate make up anyway, so this stuff is perfect

Namaste is the BOMB! My family devours the brownies and I am the only one gluten-free

I can make better fried Catfish than any southern joint.

Redbridge Beer is better than no beer

Malibu Rum is Gluten Free

Whole foods hamburger buns are good biscuit substitutes.

Glutino Mac and Cheese is my fave!

Coconut flour pancakes are the best thing after a soccer game

We are very lucky to have the resource. I cannot imagine what is must have been like in the years before the internet!

Kat.


So Bare Minerals is okay? I've been meaning to call them. Do you like the product? Is it worth the $$ ?
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Endoscopy May 23,2007 - positive

Entrolab Dec 2006:
Fecal Antigliadin IgA 209 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 35 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 371 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 42 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0302

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)

Daughter Allison - positive blood and biopsy December 2005
Son Benjamin - negative blood, has DQ2 gene
Husband Shane - negative blood




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