I almost wish occasionally that I had a gluten reaction. I never had any GI symptoms before diagnosis and still have no idea when I accidently eat gluten. But, having said that, I am gluten free and know that my health will be better in the long run. I know that I have made gluten mistakes. I have to depend on my lab values to tell me how I am doing. It has been almost a year now and I am no longer anemic (for the first time in my adult life) and my antibodies are in a normal range.
It was a hard adjustment for me and I definitely grieved the loss of favorite foods. But I am a all or nothing kind of person and I have committed to being gluten free. I know that if I cheated just once it would take me months to get back on the straight and narrow.
It's all about choice and gaining the knowledge to make the right choice. I have found that if I don't stay clear in my mind as to what are my best choices for meals then the next day I do feel depressed and sometimes a bit of joint pain.
I have been sick for a long time and not having pain is a great stimulator for staying clear of gluten.
Stay with the message board, there is so much to learn and so many people who are going through the same thing as you.
I was diagnosed on June 28.It may be a shock to have celiac disease but before I knew I had it I was told I had Crohn's Disease or Colitus. These would be much worse since they involved surgery and lasting effects post surgery. It was nice to know I could recover from the horrible fatigue, anemia, diarrhea, etc. I found a great health food store with a gluten free bakery in my city and have been buying pies,rice pasta, butter tarts, cookies etc. I was so glad I could eat chocolate but I found out I couldn't eat Lindt chocolates because of the malt ingredient. That was awful! I am still looking for other imported chocolates...Godivas are ok and other chocolates like Aero bars are ok. I have also baked pies from a receipe on internet...My family said the pies were 10's on a scale of 1-10. I found the only breads I bought that I like were made by a company called Kinnekinek (a company from Alberta, Canada). I can't get this bread in my city so I may end up making biscuits. Pancakes taste just the same when you mix up rice flour,bean flour, quinoa, tapioca flour, soya flour etc. and make them yourself...same with muffins. I got a brownie mix and put apples/peaches in the centre and it has been my daughter's favourite above anything she's ever had with wheat. Life is not over with celiac disease..its an adjustment for sure. You can get restaurant's to make you something if you press the issue...My favourite Chinese restaurant made me something gluten-free just for me. Check your area for restaurants with gluten-free menus. I found 3 restaurants with gluten-free items and a pizza place that makes gluten-free pizza. Think of it as a new adventure and a challenge that you can overcome. You will be able to eat almost everything again but in a new way!
My symptoms were sporadic as well, but you have to bear in mind that, as Tiffany said, even though you may not be exhibiting symptoms, your intestines will still show damage. Please be careful. I'm sure that you want to live a long, healthy life, and becoming completely gluten-free will definitely enhance your quality of life.
I just rad the ladys letter that went 5 years withCD and not knowing what was wrong. I know what she wAS GOING THRU THAT 5 YEARS. i WENT 9 YEARS. Yes 9 years.I have the skin type celiac disease. The terrible itching is what sent me to the many, many Doctors. Then it got yo the point of breaking out with the terrible bumps, blister type on my arms, knees, shoulgers,etc. Yopu would cratch tyhem then they would turn intro sores. You talk about something ugly this is something else.
My daughter is a nurse practictioner in the twin ciuty area in Minneaplos area.
After all of the Doctors i went to to find out what i had it was she that gave me the answer, over the net. It is time these Doctors wise up I have been on a GL free diet for several months now and it is getting better.
i'.m sure i have a long row to hoe b 4 i will get it to where it is well on the road of recovery. I,m no younster either i'm 78 years old .Any others that have had this diagnosis problem???
Godiva's official policy is that NONE of their products is gluten-free because of possible cross contamination. Unless they've changed recently, they wouldn't even discuss which of their candies they don't purposely put gluten in. I'd be delighted to hear they've changed that policy.
Don't know about Belgian/Swiss chocolates. Is Ghiradelli? Much of theirs is gluten-free.
The frustrating thing about Godiva is you know the vast majority of what they make is gluten-free -- probably everything they make except the obvious stuff. If they'd tell us what is and isn't with the contamination disclaimer then we can make our own decisions about the contamination issue.
But, it's harder to imagine giving up pizza, bread, pasta, etc because of damage that I can't see or feel. You know?
My son is in the process of being diagnosed. I am grieving for him as well. I have vowed to learn how to make all the foods he might miss, in a new safe way. Don't long for things- try to satisfy yourself with a gluten free pizza, etc. Best wishes.
"But, it's harder to imagine giving up pizza, bread, pasta, etc because of damage that I can't see or feel. You know?"
The gluten free pizza, bread, and pasta I eat tastes just like the real thing. I can't tell the difference between wheat pasta and gluten-free pasta and I actually find gluten-free pizza better than the regular. It's really good. All of the foods that I eat taste like the real thing, I hardly even notice anymore that I am gluten free. If you want to know some good brands email me at firstname.lastname@example.org
And if you're curious, McDonalds fries and burgers without buns are gluten free. : )
under no circumstances should you eat wheat anymore, because, i have the same thing, 0 out of 1 million times i feel a thing when eating gluten. However, the doctor said my intestine was messed up and i went back last month and he said it was looking great. i don't know what can happen if your intestine gets messed up a lot but it's probably not good.
Hi all, Im still very new at this but feel the need to write. Ive been gluten-free for about 7mo now and night b4 last I got up and slept walk to eat some bread. Ive always walked in my sleep but never to eat. I was told by my doctor once again that I tested negitive for C.D. and wasnt willing to eat the stuff again to be retested. It hurt too much. Well, after getting up and eating that wonderful gluteness food I have been SICK since. Cant even leave the house due to the stomach pain, constant trips to the bathroom, insomnia. Now, this really makes me mad cause I was just told once again I was crazy. Subconsciously tried it one more time and feel terrible. Does it sound crazy that blood tests could just be wrong? I had taught myself to stop eating all together before testing cause I believed everything made me sick. Now Im crazy cause I started this diet due to the pain I feel when I did eat glutens? Is there a win in this situation? I know Im not crazy... just proved it to myself again but how do I get this doctor to understand?
maybe it's time to change doctors--sometimes you have to try a new avenue--i listened to the doctors and went over 20 yrs without help--an internal medicine man told me IBS or spastic colin, told me to reduce my stress (right, we can all do that) and put me on xanex--they started me on .25mg 4x's a day--i could not even walk let alone function , so then they told me to just take them when i felt a panic attack coming on--well, my tummy problems were what was causing the panic attacks because i knew that if i planned anything or was taking someone somewhere, that of course my tummy would act up, so then i had anticipatory aniexty too--i know now that me being celiac and not absorbing my vitamins was causing me to have a chemical imbalence in my brain which caused the panic--when the xanex didnt work, they put me on paxil--by the time i tried going gluten free, i was taking 40mgs of paxil a day and barely getting by--as i was getting better from removing gluten from my system, i also weaned myself of paxil--they tell you paxil is not addicting , but that's a lie--you NEED it and there were days when my man would tell me to please take my meds--i would have crying days--cry all day long, it was difficult to be around me, i am sure--learn to listen to your body--it takes time and the truth is, i know i am a celiac, never been tested, but i know and even if i wasnt--gluten free will not hurt you, we can live very healthy lives without gluten ----SOOOOOOO listen to your body--otay deb
Deb Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
Lpellegr used the "report" button to try to reply to this thread. The member wanted to say:
I am recently diagnosed and also have no outward symptoms other than anemia, which I found through blood testing (I never felt anemic), so I have no way of knowing if I have accidentally eaten anything forbidden. People keep asking if I feel better, but I felt fine before except for random GI symptoms that I thought were IBS. So even though it makes no difference to how I feel, I am trying to stick really hard to a gluten-free diet because I have read about the long-term consequences of gluten exposure. Cooking at home works out fine, although substitute food can be expensive, but eating out is a challenge (and I'm already planning what I will do when I have to travel for work - not easy). But I am sticking to it to make sure it doesn't get worse. Like some of the other posters said, focus on what you can have and try to include new things, rather than mourning for what you can't have. I try to educate friends and family to the long-term consequences so they will help me, and most willingly do. Now if I could only find a good substitute pizza crust....
And if you're curious, McDonalds fries and burgers without buns are gluten free. : )
Please be careful here! I don't know if McDonald's serves onion rings, but other fastfood joints do, and they cook the rings in the same oil as the fries. At least, all of the ones I have been to do! Just remember to ask if the fries are done in a dedicated fryer!
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25