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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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    • Wheatwacked
      Library paste and paper mache.  I have in passing read of wheat based glue used to glue fish tank filters together so it is not surprising they might be in refridgerator filters. Seems the issue with bottled water would be at the personal filters rather than the mass filtering.  Just have to boycott the brands that effect you.  Gatorade drinks all have either gums, modified starches or stevia that might be affecting you.  Looking for energy or hydration try Red Bull.  It has the vitamins, minerals, antioxidant Taurine, sugar and glucose to process the sugar from mouth to ATP and clean up. Taurine is essential for protecting mitochondria from damage, such as from reactive oxygen species (ROS) or calcium overload. If you are exclusively drinking bottled water you may want to consider taking Lithium Orotate 5 mg.  We need about 1 mg a day of Lithium and mostly it is gotten from ground water.  Lithium deficiency can cause anxiety and suicide.  I find it helpful. Lithium in the public water supply and suicide mortality in Texas: Journal of Psychiatric Research Is Lithium a Micronutrient? From Biological Activity and Epidemiological Observation to Food Fortification
    • YoshiLuckyJackpotWinner888
      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in  such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If I went to physician to get checked for other possible triggers from a water bottle, I don’t think that will go anywhere. Again, distilled water containers cause no reactions. I’m not an industry expert, but something is there.  I don’t think that this is a case of microplastics causing this. Too bad we can’t call upon some third party investigation.  
    • Scott Adams
      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, it would not pass through RO membranes or remain in finished bottled water at clinically meaningful levels. Plain water — filtered, RO, or bottled — does not contain gluten unless it is intentionally added (which would require labeling). Steam-distilled water is certainly safe, but it is not considered medically necessary for people with celiac disease. If reactions are occurring, it may be helpful to explore other potential explanations with a healthcare provider rather than assuming filter-related gluten exposure.
    • Scott Adams
      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2 or HLA-DQ8). While some laboratory studies have shown that certain Candida proteins (like Hwp1) share limited sequence similarities with gluten or tissue transglutaminase (tTG), that does not mean Candida causes celiac disease or commonly produces false-positive tTG tests in clinical practice. Anti-tTG IgA remains a highly specific and validated marker for celiac when used appropriately (especially alongside total IgA testing and, when indicated, biopsy). IgG antibodies to Saccharomyces cerevisiae (ASCA) are more commonly associated with Crohn’s disease and are not considered diagnostic for celiac. There is ongoing research into microbiome interactions and immune cross-reactivity, but at this time there is no evidence that yeast exposure from foods triggers celiac autoimmunity in people without gluten exposure. If symptoms persist despite a strict gluten-free diet, it’s best to work with a gastroenterologist to rule out other conditions such as IBD, SIBO, non-celiac food intolerances, or refractory celiac disease rather than assuming a fungal-driven mechanism.
    • Scott Adams
      It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from casein sensitivity. IgG food panels, including yeast, are generally considered markers of exposure rather than proof of clinical intolerance. Aged cheeses like Irish cheddar are typically gluten-free, though they do contain casein and natural cultures. If symptoms are strong and repeatable, it may be worth working with a gastroenterologist or allergist to sort out true allergies, intolerances, or other GI conditions rather than assuming multiple cross-reactive immune triggers.
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