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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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    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
    • Scott Adams
      In the USA only wheat-based breads are fortified with certain vitamins, but not gluten-free breads, thus we typically encourage celiacs to take multivitamin supplements.
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