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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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    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
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