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Does It Ever Feel Like Too Much?


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hadafish Newbie

Thanks for all your stories. This morning it was just what I needed - to know that I am not alone. I have gluten sensitivity, casein sensitivity, fibromyalgia, myofascial pain syndrome, asthma, scoliosis, degenerative disc disease and numerous other spine problems, arthritis and almost constant joint pain knee, hip and both feet in spite of beinfg gluten free for over a year now. However, it is important to add that I have had hardly any migraines, very little heartburn (except for mistakes) and less anxiety, which is not to say that it is not still an issure for me. I thnk I am becoming more eccentric since my diagnosis, or just getting a bit wierd. The only food I can eat is the food I prepare. I am tired a lot of the time and sometimes I am very sad about the loss of my health and mostly of my independence - not working currently. Just taking care of myself and the household is about what I can handle. I do, however, feel very thankful for many things and especially that I know I have gs/cs. The help from this and other similiar boards is huge. I find that I often show the "good sport" syndrome. A friend will ask how I am doing and even though I have a lot of pain I say "fine". Later, I wonder why my friend does not understand the depth of my difficulties and then I remember I have not revealed the truth. I think it is hard to determine which is better, to say I am fine on the hope that it will become real or I am in pain so that friends will understand. Mostly, I don't want people to know the extent of my problems and that is what is so great about being able to come here. Thanks to all. Jan


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plantime Contributor

I needed this today, too. I get hurt when my "friends" make Sunday dinner dates at Pizza Hut, then tell me that I'm not being sociable when I don't go. I get angry when I read the soup labels in the grocery store, they have chicken, wheat, or rice in them, none of which I can have. I struggle to eat my burger wrapped in wax paper while whoever I'm having lunch with is complaining about the buns being stale or hard. Right now, all I want is a bowl of cornflakes. All of the corn flakes I have found use malt flavoring, so I can't eat them. I don't mind when my family and friends eat bread and pasta, it does not bother me. It is the plain, "grown-up" cereals that I miss. And getting people to understand is next to impossible, unless they have the same problem.

plantime Contributor

Food isn't my only issue. When I was 12, I was diagnosed via blood test and xrays with Rheumatoid arthritis. Now I am 40, and the Rheumatoid factor was not in my blood, but the osteoarthritis factor was. It leads me to believe that I have both, since I do have symptoms of both. My doctor says no, it is impossible to have both. Is it really? The treatments are not exactly the same, except for pain management. One is an autoimmune problem, the other is a wear-and-tear problem. One is treated with immune suppressants, the other with anti-inflammatory stuff. If I use chondroitin and glucosamine, one joint starts feeling better, but others become so badly inflamed it is unreal. Now I have been formally diagnosed with celiac disease, which at least explains the pain in my gut. With all of the food allergies that I have, and all of this other, I feel like my body hates me. I do the best I can do to take care of myself, and this is what I get in return? Aches, pains, swollen joints, can't eat what I want? Sometimes I wonder why I bother with sticking to the gluten-free diet. Give me real Oreos and Cornflakes!

tarnalberry Community Regular

There are a few makers of corn flakes that are gluten-free - check out the health food stores. In fact, I like Nature's Path corn flakes better than the standard Kellogs. There's another company (I forget which one, but I saw them at Wild Oats) that makes gluten-free corn flakes as well. And Erewon's Rice Crisps with freeze dried berries are good too (not too sweet... I hate really sweet cereals).

plantime Contributor

Thank you, Tiffany! I will keep looking until I find them! Maybe if I ask at my favorite whole foods store, they could order some in. My husband asked me when I was going to my store again, and would I please go on his day off, he would like to see my store. It makes it easier to handle, knowing that my hubby isn't mad at me for driving 40 miles one way once a month just to buy $20 of groceries!

tarnalberry Community Regular

I almost forgot - depending on where in the country you are, you might be able to find Nutty Rice. It's like GrapeNuts, but made with rice. I'm a fan of it. Very crunchy/hearty and definitely not sweet.

Guest ~wAvE WeT sAnD~

Hi everyone!!!

To answer the original posts...

Going to restaurants is terrifying for me. I hate eating out, and it makes me sad, because a) it used to be fun B) everyone I know wants to go...and I can only think of the holes in my intestinal walls from all the cross contamination.

Sometimes it's hard to explain to the individuals who are hearing the Celiac story for the first time--but I try to remain optimistic, because most of the staff members have learned a great deal--I'm still working on one. Patience has always been a challenge for me.

Life is still positive...I just tried Envirokids cereal and am AMAZED at how much it tastes like Gluten cereal! And, it has CHOCOLATE! WOO HOO! :o:D

That makes my day :)


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      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
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