Last week, I received an email from somebody asking how he should best respond to his girlfriend, who has celiac disease, when she does not feel well.
I opened the question to the forum and as usual, you folks rocked with your responses.
But there was one comment from Miss Dee Meanor (love the name!) which just totally captured the essence of celiac disease in a way I could not communicate as I continue to struggle with this affliction.
I was so blown away by her response that I asked her if I could make her comment its own blog post to give people a vivid portrayal of our disease.
She complied. Here it is.
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So many times we look okay on the outside and no one can see the bone-weary tiredness, the aching joints, the fuzzy brain, and/or the war going on inside our bodies. We go to work when we don’t feel well because we have to. Our sick leave is reserved for times when we simply can’t function at all or for the multitude of doctor visits that are sure to arise from other complications caused by the disease.
Our “tired” when we’re glutened is not the same “tired” that you feel. There should really be a new word invented for the “gluten tired” that makes it a Herculean task just to walk through the house.
Don’t feel offended if she seems fine with people outside the home and then sick when she returns home.
We often smile and chat with people because we feel we have to. Sometimes our jobs depend on it. Sometimes we have social occasions that we must attend and don’t want to be the guest that dampens the entire occasion. (i.e. weddings, business dinners, family holiday celebrations).
When we come home we are spent physically and emotionally. It takes a toll on everyone, but especially loved ones who get the short end of the physical and emotional stick. In other words, know that we become good at smiling through the pain for others because we have to, but appreciate NOT having to do that with the ones we love. She thanks you for allowing her to feel safe enough to drop the act when she is with you. Sadly, many of us have loved ones that take offense and feel they are being treated worse than strangers.
Don’t take offense if she doesn’t want to be touched at all. Know that sometimes a gentle hug or caress can hurt. My husband loves to put his arm around my waist, but if I’ve been “glutened” I will flinch and draw away as a reflex. What he can’t see is that I feel like my abdomen is an overflated balloon. I have even looked in the mirror sometimes thinking I must look six months pregnant and am surprised to see that I look no different. The best thing is for the two of you to open the communication lines.
We actually joke about what my husband calls the “Don’t touch the tummy!” moments.
Know that advance plans are scary for us because we never know from day-to-day how we’re are going to feel. That event scheduled two months from now can’t be fully appreciated until the day before. I’ve actually been a paranoid basket case just before an event and have eaten next to nothing. We simply can’t get as excited at events on the calendar as others. It isn’t because we aren’t excited to do things with you. We are afraid that we’re going to feel horrible on that date and don’t want to disappoint you.
Sometimes things that are exciting for most people like cruises, resorts, and multiple destinations are scary for us. Buzzwords like “all-inclusive” are particularly horrifying because we’re locked in to where and what we eat . Part of the fun for any trip is sharing meals. Unfortunately, for us that becomes the biggest stress and fear. Throw in a trip where we don’t speak their language and the fear is magnified.
Be willing to be flexible. One crumb can make that dream vacation or even dinner and a movie become months of torture. One vacation in San Diego I ate dinner at one location I knew to be safe and then we went to another for my husband to eat at his favorite Mexican eatery. We still had a great time.
Be her champion. My husband is now a pro at questioning restaurant staff and talking to managers when I feel like I just can’t talk about gluten or cross-contamination another moment. He is my second set of eyes for little things like spoons being double-dipped from gluten items into the gluten-free ones. He educates others. He doesn’t ask what he can do to help because he knows I hate being an invalid. Instead he says, “Let me do that for you.”. (Those six little words say more than all the Hallmark cards ever written 😉
He takes over when I can’t function. Last February I came out of surgery and the nurse tried to give me a cracker and ginger ale in recovery. He was on it like a dog with a bone and practically slapped the cracker out of her hand.
This is the man I hope I never have to live one single day without.
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Who is Miss Dee Meanor?
I am a wife, mother, grandmother, and librarian who was born and raised in Savannah, Georgia, but am now living in South Carolina. Among other things I love to ride horses over large obstacles, garden, take boat rides on the lake, read good books, sit on the beach, feed the birds, and spend time with my family (not necessarily in that order). The next thing on my bucket list is to visit Charlotte, NC, and ride on a NASCAR track with a driver. (I don’t watch NASCAR or particularly like to drive, I just like to ride in (or on) fast things and saw this experience on Groupon. Best of all, it does not require me to eat anything.)
I happen to have Celiac Disease, but it does not define who I am. It is just something I have to deal with so I can get on with the things I really want to do. I actually feel blessed to have finally put a name to what has made me sick for decades even though I miss Southern Fried Everything and really good beer. I am fortunate to have a husband who took eating gluten-free as a Top Chef challenge rather a personal affront. He is my biggest support network, my best friend, and the love of my life.
I hope that awareness of Non-Celiac Gluten Intolerance soon gets the same attention from the medical community that Celiac Disease is finally generating. I sometimes think they must feel like forgotten stepchildren, but we (Celiacs) share many of the same symptoms and understand that it is just as life-altering. We are all in the same boat and gluten is trying to sink it. The best advice I can give anyone is to listen to your body first and foremost. You can look really good on medical tests, but know your symptoms aren’t in your head. Usually by the time gluten intolerance is finally detected the damage is quite extensive. Also, if you have chronic ANYTHING, look suspiciously at gluten. Hives were one of my first chronic symptoms although my tests showed no allergy to wheat. The hives continued well into my forties. It was blamed on stress and I was prescribed Xanax. I still hived, but didn’t care. I sometimes miss Xanax.
Gluten Dude…thank you for writing a blog that tells our story from a personal standpoint and allows us to rant, rave, laugh, and tell our stories, too. All of us are always more powerful than the one of us. I am so glad I found your blog.
Hives…seriously? I was also told that hives were stress-related and not caused by celiac disease. Since I refused to be put on Xanax (although there are times when I wonder if it was the right call), I was prescribed Zyrtec for the hives, which keeps them under control. I only take it at bed time, however, because it unfortunately makes you feel like you are walking underwater. I was freaking out, saw a dermatologist, hoping it wasn’t DH (skin-related celiac condiiton). But hives? Gotta love CD. You never know where it’s gonna hit you. It’s definitely a full-body experience! Thanks to Miss Dee Meanor, for summing up in a nutshell what we can feel like when we are glutened. And thanks as always to Gluten Dude, for bringing these wonderful people to light and always picking a great topic for discussion.
What a great post. So defining of all the things I feel so often. Thank you for sharing.
Dude, you are forever putting out the BEST posts I’ve seen anywhere. This one is above and beyond…thank you Dee, and Dude… keep it up.
Thanks Robin. Will certainly do my best…
Just want to say thank you to both of you for letting those of us without CD just how someone suffering from this disease really and truly feels. I have a girlfriend and a niece suffering constantly and Ms Dee summed it up so that now I can truly say I understand what they are feeling daily….thank you again for sharing you’re lives with others and putting a ‘human’ side to this
So I’m 13 and have lived with celiac disease my whole life. All of it. And this post focus’ on a lot of the key things. But since I’m a kid and going through school on, camps, excursions and so on where eating foods may be a part of the activity can be quite annoying because people tend to believe I’m a lost puppy in a world of unfamiliar ingredients. I’m not stupid I’ve done my research and I know what I can and can’t eat. Yes they are trying to be helpfull but sometimes its almost like an obsession of what I’m about to eat. I know it sounds like I’m ranting about people attempting to help me because I am only 13 but it adds to the regular things that can be a chop at my morale slowly. Along with the fact that absolutely everything is smaller! It seems that the GF market is simply influenced by the large proportion of people that go on the diet to get “healthier” so the portions of food fit the belifs that they’re going to get healthier and than the food costs twice as much. I live in a broken family where my mum isn’t on a high income and so the food costs, feel are really quite a hard thing to accomplish. My mum in no way makes me feel guilty and tells me “its no big deal” but I can’t help but feel a bit disheartened . Thanks for reading my rant about our shared disease :/
I am 13 as well; I will agree, it is very annoying when people assume you know nothing about your disease. I also suffer from Celiac and it sucks; school lunch is never an option, and people just assume I’m picky. Hanging out with friends always has to revolve around me because we need to find what food to eat, that can also be a good thing though. I have come to terms with my celiac and made the best out of it and I hope you do too!
What an excellent post. Thanks Gluten Dude for asking Miss Dee Meanor to guest blog. This so hits home.
My daughter, who has celiac disease, had/has serious hives. SERIOUS. Yes, it seems any condition can be caused or aggravated by gluten.
I LOVED Miss Dee Meanor’s thoughtful response. Not only was she right on, she has a sense of humor to go with her wisdom. That’s just as important.
Good one, GD.
Melissa
I am going to print this out and let everyone at work read it. Then (even though I have a TOTALLY supportive husband and son) I am going to take it home and let my family read it!
WOW!!! Dee…You hit it right on the head with a SLEDGE HAMMER! Thank you for allowing Dude to share this with us!!!!!!!
Donna
Wow, I never even thought about the hives that I used to get regularly and that I only very rarely get now! I just thought I somehow finally grew out of them in my 40’s =)
Excellent post – thank you to both Miss Dee and Gluten Dude for sharing.
I’ve experienced 99.9% of what Dee described above … but I DID actually look 6 months pregnant!! Dee’s comments bring back so many memories of how I felt leading up to my diagnosis. Friendships that I let slip away, just because I couldn’t keep up due to fatigue and still trying to keep up with twin toddlers! As Dee described, and as anyone with an undiagnosed gluten-intolerance knows, it isn’t an easy road to follow … but I’m just grateful I received a diagnosis, so I could begin to heal. Great post Dee and Dude. Interesting about the hives, I had an episode of hives (huge) in my early 20’s and they came back recently for a few weeks .. not really knowing why.
Thank you so much for posting this. I am going to share this with my husband. I think it will be comforting to know that he is not the only one who has a weary wife. I have be diagnosed just over one year ago and have been on a strict gluten free diet since the moment I was told. My antibodies are way down but I still fight a somewhat foggy brain and overwhelming fatigue. When does this get better? Does it anyone know? I agree, that a new word for gluten-tired needs to be created! Thanks again for providing such needed support and understanding.
Everyone is different Kate. It took me a few years. Some people feel better immediately. I hate them. Just kidding…sort of.
I see Elizabeth Hasselbeck and want to choke.
ditto
I hate them too! (just kidding!!)
Healing time varies. 6 months–to 2 years or more.
I will take years, but I was ill for a very long time and had complications.. Some symptoms resolve quicker than others. I see improvements all the time, but I did not turn a corner until 10 months after DX.
One thing I do know, it requires enormous patience to deal with recovery.
And a gigantic sense of humor. :>)
If you are still foggy -headed and have fatigue, make sure your doctor checks your folate and thyroid levels. Check all your prescriptions, etc. for trace gluten. Just a suggestion.
Hang in there!! I crossed another hurdle at about 18 months.
best wishes!!
Kate, did they take you off all grains, or just wheat gluten? If you are still eating other grains, you may want to try eliminating them (even corn).
Also, did they test you for candida? When I was diagnosed, my dr. took me off all grains, dairy, sugar and put me on an anti-fungal for 1 yr (nystatin).
It’s been 10 yrs , and I can now eat some other grains (quinoa, rice, organic corn) VERY occasionally. But, if I try it several days in a row, the stomach issues and fatigue set in. Hope this helps.
I just thought the same thing as you and many others here … Printing it to share with my family and close friends.
Thank you for acknowledging Non-Celiac Gluten Intolerance … I do not know if I have one or the other and it does often leave me feeling somewhat left out and not taken seriously.
Thank you Dee and Dude.
Dude, thanks for posting this. Dee, thanks for sharing. I can relate to your whole post…right now anyway. For 28 years I was a happy, healthy Celiac on a strict GF diet. Then 2 months ago someone in our house turned the ceiling fan on in the kitchen while baking with wheat flour. I have never been so sick….the worst glutening I ever had. Guys, if you are in the vicinity of airborne flour, hold your breath & run the other way!!! I am still eating an extremely bland GF diet & I am still not feeling well, after 2 months. I hope it gets better. We have a Celiac Center near here & I have an appt next week. But Dee, reading your post let me know I’m not alone. Thank you. And Gluten Dude, you have the best GF blog on the internet & I am grateful to have found you. Thanks! 🙂
PS….thanks for sharing about the hives too. I have hives now & I never had them before. It was puzzling me, but thanks to you now I won’t panic. I’m sure it’s connected to be glutened.
Thank you so much for this post. Our 2 year old has been diagnosed 1 year ago. We do our best and try so hard to keep her safe from the dreaded gluten. I think we do well, but it’s hard outside of our “home bubble”.
Twice she has been “glutened” at other places when me or her dad were not there, despite instructions and taking safe foods. The effect on her was horrible. It is so hard to see as a parent and for her to explain as she is only little.
Reading these words gives me an insight in what is going on for her during those times. And it makes me cry for our little girl. She is a tough one and I admire her for her usually so sunny personality and amazing happy smiley face. The stuff she has to go through……… I take my hat off to everyone dealing with this diease.
Thank you so much for this post Gluten Dude and Miss Dee Meanor , it made me cry , simply put and beautiful .
Miss Dee!!
Thanks for sharing your experiences. You have captured the life of a celiac so well.
Like you, I have a rock of a husband –and he’s a champion label reader. He’s my love, best friend and my heartbeat.
We’re blessed.
We have to be very tough cookies to live with this thing.:>)
For all of you who still experience bone tired fatigue please, be sure to have your thyroid, FOLATE levels and B-12 levels checked.
And hives (urticaria) are listed as one of the top 20 symptoms associated with celiac (not to be confused with dermatitis herpetiformis “DH”) but sadly, not enough doctors are aware of this association.
But we already know that they are not very good at putting it all together, don’t we?
In Living Without Magazine recently, I saw this:
“The Meaning of Hives
When no cause can be found for chronic urticaria (hives), it could be autoimmune in nature, say researchers from Tel Aviv University in Israel. Investigators there recently undertook one of the largest studies to date on chronic urticaria (CU), confirming previous reports of a strong association between CU and multiple autoimmune disorders.
Individuals with CU were 17 times more likely than those without it to have been diagnosed with an autoimmune disorder, such as thyroid disease, celiac disease, rheumatoid arthritis or lupus. The high rate of autoimmune disorders lends support to the idea that CU is a member of this group of diseases, say researchers.
The study, published ahead-of-print in February in the Journal of Allergy and Clinical Immunology, provides a framework for better understanding CU, as well as helping to increase awareness of the potential for co-existing autoimmune disorders”
Thank you for posting this! I did not know this information, but it makes perfect sense. My hives actually let me know if I’ve been glutened. My first response are the hives followed by the rest of it.
I am so deeply flattered that my post has touched so many of you. We may all have different symptoms (or no symptoms at all), but the one thing we all have in common is that staying gluten-free is a huge undertaking for not only us, but our friends, family, and co-workers. (Who else hates lunch-at-work meetings that always seem to include pizza delivery?) Thank you for sharing your experiences.
Dee
I myself do not need to be GF, but when my husband was diagnosed with CD after a disastrous first anniversary vacation, I made it my mission to keep him safe. He is not a label reader, he is not one to want to be fussed over, and he probably wouldn’t have been diagnosed unless I had watched my best friend go through the exact same thing years earlier. I am the one who shops, I am the one who got rid of our kitchen utensils and cookware that had been contaminated, and I am the one who cooks EVERYTHING from scratch now. As a spouse of a celiac, I am 100% invested. I am so heart broken when I hear about people’s loved ones not supporting their health. One of hubby’s Aunts has very severe gluten intolerance and a myriad of other allergies, and at a family party her husband, Christmas cookie in hand, asked me why I choose to also be GF. My response was that if I ever had a life altering medical diagnosis, I would want my husband to support me and my treatment. With Gluten, the treatment is strict dietary control and not cross-contaminating the things that he *can* eat. And I will support him 100%, in sickness and in (GF) health.
Amen to that Katelyn!!!!!!!! My household is ALSO gluten free for ME. My husband does all the shopping, label reading, cooking…etc, etc!!!! What a difference when we have support!!!!!!!!!!!! Thank you for sharing such an inspirational story!
Gluten Dude and Dee, Thank you so much, I don’ t feel as alone after reading this post. I feel connected…… 🙂
That’s what it’s all about Robin…
Wow. Very well said Dee. I have a wonderful husband, a daughter who is eight,a seven year old son, great family, and a few friends who champion the cause and probably prevent more illness than they know. I have lost so many friends because they couldn’t understand the confusion or fatigue… many believing I had an eating disorder! This post really states it well. I wish my no longer close circle of friends could read this and learn to relate. No offense to them, I thought I was crazy too!
Thanks.
Great post. I wanted to add that not only hives can be associated with it. I had intractable eczema for years, and used to just ITCH all over to the point where I couldn’t sleep, even without obvious hives. It turned out it wasn’t entirely directly celiac related, although it definitely improved when I went gluten free. What finally freed me from the itch was discovering I’d also developed several food allergies as well. Apparently, people like us with damaged GI tracts can be even more susceptible. If anyone is gluten free and still itching, allergies should be considered. This was something I had to figure out on my own. The doctors were worthless. Gluten aside, if I consume any dairy, soy, citrus or nightshades (tomatoes and bell peppers being the worst), the rash comes back within a day and I’m up scratching again all night. With a few of those things, my throat will swell too. It’s been a godsend to finally be free of that eczema after so many years!
Fantastic post! In addition to my wheat and other allergies, I have thyroid diseases and MS, so I have been dealing with “tired” for a while. I take a narcolepsy medication for MS fatigue. People say things like “I know how you feel; I stayed up late.” Well then you don’t know how I feel–I can get all the sleep I’m “supposed” to get and I will still be bone weary. I do have a lot more energy since finding out about my allergies. Yay!
I’m curious about the hives some of you get. I get “pimples” on my chest and the back of my neck and my scalp and I’m wondering if it’s related since I otherwise have good skin. I broke out right before being down with pain so that’s the only reason I’m jumping to conclusions. 🙂
I had severe itchy skin and oozy little sores on my scalp, face, inside my mouth. I sometimes had what people call “fever blisters” or cold sores, too.
They are all gone, unless I get glutened. :<(
I asked my very celiac-savvy GI doctor about all this. I was lucky enough to find him after 9 months post-DX.
He calls any skin eruption a "gluten rash".
Aside from Urticaria, (chronic hives), other
INTEGUMENTARY SYSTEM PROBLEMS of CD are listed below:
Disorders of skin, hair, and nails.
Alopecia Areata (Patches of hair loss)
Alopecia, Diffuse (Balding)
Cutaneous Vasculitis
Cutis Laxa
Dermatitis Herpetiformis
Dermatomyositis
Eczema
Edema (Swelling)
Eythema Elevatum Diutinum
Erythema Nodosum
Follicular Hyperkeratosis (Dry rough skin/ plugged hair follicles on body)
Ichthyosis, Acquired
Itchy Skin Rash
Hangnail
Koilonychia (Thin nails that flatten, ends progressively turning up instead of down)
Melanoma
Nails, Dry and brittle that chip, peel, crack or break easily
Nails with Horizontal and Vertical Ridges/Fragile
Nail with Rounded and Curved Down Ends, Dark, Dry
Nails with White Spots
Nails with Splinter Hemorrhages
Pityriasis Rubra Pilaris
Prurigo Nodularis (Hyde's Prurigo)
Psoriasis
Scleroderma
Seborrhea
Thin hair
Vitiligo
I'm still dealing with major hair loss. It's growing back, but not fast enough for my liking.
For more information about associated disorders/diseases, you may wish to look here:
http://www.recognizingceliacdisease.com/21.html
I have been dealing with those sore myself, as well as the hair loss. I can’t tell if its growing back as I shed severely or if its just shedding massively. I do all sorts of “remedies” and supplements. some seem to work more than others. Ive been gluten free for 3 years, its doesnt seem to be getting better. Any suggestions?
Very interesting, V. I too have M.S. and thyroid problems in addition to all of the food allergies and celiac. My adrenal glands also failed (apparently, this is also more common in people with celiac disease as well–we’re such a healthy bunch). When I was being diagnosed with the M.S., a neurologist (without telling me) included a gliadin panel in my blood work. Since I’ve been gluten free for 10 years, it of course didn’t show anything. She informed me that I didn’t have celiac disease. I explained why I did, and told her she should Google it if she didn’t believe me. She still didn’t believe me. Living with celiac disease is so hard as it is, but to have something that even your doctors don’t understand…Through all of it, of course, people keep telling me I look great…
Well said and well written Miss Dee! You definitely hit the nail on the head with some thoughts and emotions that I haven’t admitted in quite some time.
I’ve been diagnosed my whole life (30+ years) and have been through every kind of emotion there is and it still isn’t easy. Yes, there are WAY more gluten-free options with products and in restaurants but the inconvenience is still the same. I was blessed that my boyfriend, now husband, was supportive from the get-go. He would double check that the waitress knew the burger could not touch the bun, etc. He evens allows our home and toddler to be gluten-free and doesn’t pressure me to have her tested. We recently went Paleo (grain-free) and I feel even better than just being gluten-free for the past 10 years-so relief is possible.
Just because I’ve ‘been there, done that’ though, doesn’t mean the emotions get easier. I hate being the one to choose where to eat all the time, with just my hubby or in a big group, though I appreciate the consideration. Sometimes you just want to feel ‘normal’ (whatever that means) and not have to feel anxiety towards your next meal or how you will eat on the plane and if your supplies will last. And when you are sick, you just want to curl up in a ball and come out when your stomach doesn’t feel so bloated and uncomfortable. *I think I can look back now and realize that my moodiness came from eating gluten at just about every meal though my parents tried to understand what going gluten-free meant.
It can be miserable having Celiac but I have to feel that I’m blessed to monitor every.single.thing that goes in my body. Thank goodness they now have labels on everything because back then you never knew what was in a product and were taking big risks. Now, people may have heard of it or even have a child or friend that is gluten-free so it’s not that uncommon anymore. I still stand by my statement that ‘Now is the time to be diagnosed!’ (Don’t hate me Dude) There is so much more information at our fingertips along with products and baked goods that you ALMOST don’t feel you are missing out.
It is a hard road but the take away would be to educate people on what Celiac Disease is and the affects of gluten. Try not to get down on yourself and allow that recovery time should you ingest gluten unknowingly. I think awareness is key along with support if you are having troubled times.
I didn’t mean to write a story but this topic is near and dear to my heart. I live and breathe gluten-free but don’t let it define me as a person…I’m just an everyday gal who happens to eat a bit differently than most of the world. I don’t know that I would want to live my life any differently and can only be thankful for the support and love I have been given on this lifelong journey.
Thank you Miss Dee for putting my thoughts and feelings into writing and thanks for the post Dude 🙂
Here is my post on the subject: http://crunchyhotmama.com/2012/05/08/celiac-disease-awareness/
I just read this post and am crying. Miss Dee Meanor, put in word what rattles though my foggy brain all the time. I wanted to scream out YES when she talked about our tired being a “different” tired. I don’t know how many times my family will show up somewhere without me (sick or tired) and have people ask them where I’m at. When they say she was tired, soooo many times they get a snot and the comments, “I’m tired too”. “I WORKED all day”, “Everyone’s tired”. One of my daughters has even come home crying because of the lack of compassion for her mother. All I can tell them is the people just don’t get it, while in my brain I want to beat the crap out of them (if I had more energy).
Again, love the post! Love that your blog creates a community for all of us who live with this individually.
Still crying!
Wow! She explained it all. Im not alone and thanks for this.post!
Her statements took my breath away. I wasn’t expecting that. Thanks so much for sharing this.
You’re welcome Pamela. I just reread it for the first time in awhile and I still have a strong reaction to it.
That describes me exactly. This is a total lifestyle MAKEOVER! I am only about 5 months into the diet and have been “glutened” at least 4 times. I have taken the over amount of sick time for the quarter. I have to bring a doctor note when I come back. I HATE being sick. So I am quite paranoid of eating out, because that’s the times I have been “glutened”. I did not get this on purpose and did not “do this” to myself. I did not get Celiac disease because I was on the Atkins diet. In fact I probably healed from it and got progressively worse when I added what I call “mainstream” grains to my diet. I am NOT my disease. I am a human being who wants to LIVE. Nuff said. Miss Dea Meanor—YOU ROCK!!!
And so do you Claudia…
Its amazing how similar our symptoms all aPpre, especially what I refer to as ‘broken glass moving through my intestines’ after I got gluten somehow. I go between, feeling bad to always socially disconnecting myself with any eating and drinking, regretting that I gave in and ate something dangerous to fit in, from bringing my own yucky food and making light of it. Its exhausting, and Im wondering if the timing is right for the CDC to make an official classification of these symptoms as gluten Sensitive reactions,and propose protocols to be adopted by the AMA and insurance and labor industries in respect to a diagnosed and recognized chronic medical condition worthy of attention? Im tired of being secondguessed. I heard 5 years gf can promote healing, and lifelong after. Ive been GF since July2010. It helps…..q
I feel like I just read my autobiography…thank you for putting into words what we feel/ deal / live with day in and day out.
Thank you…
Just thank you
This so clearly describes my life during the two years before my hip replacements. Add in the non-celiac gluten intolerance that I didn’t know I had, and life was a wild ride. People who have loved ones who are living with any type of chronic pain need to read this. I wish I had been able to express myself so concisely to my family. Thank you both so much for sharing this.
This is the best explanation I have read on what it feels like to be affected by gluten. I am fortunate to have over protective children and a loving soon-to-be husband who also watch for double dipping and careless restaurant mistakes. It’s a team effort to stay healthy and I am grateful for the kids and Sean fiercely protecting my health.
Thanks for sharing this!
Thank you for this. (:
This is such a powerful post. As many dude posts and responses this one made me cry. I needed to hear “listen to your body” more than ever right now. I have also experienced hives for a long time. They are a daily occurrence now that I’m GF. I went to an allergy dr recently and he did the skin test. I am allergic to almost everything. Ironically I had no skin reaction to wheat. He put me on an allergy medicine and the hives were much less severe. About 3 days later I got that “I got glutened” feeling. We were out of town so I assumed it was from eating out, although my husband researched all the restaurants we went to. Of course we talked to managers or chefs once we arrived. After about 2 weeks I realized after I took the medication my stomach started hurting. I quit taking it immediately and contacted the manufacturer. I was told it was gluten free. I told the girl that my body was telling me something different. So back to square one with the hives. I’m going back to the dr in a few weeks. I have to eat foods that I’m allergic to or I would literally would have nothing to eat. Btw my dr said hives are not related to stress. Dee’s post has confirmed that I have to listen to my body and trust it. I am not crazy. Wow so good to put my feelings into writing. You all inspire me everyday. Thank you Dee and gluten dude.
I am also thankful for finding this site. I thought I was the “odd celiac” because most of my symptoms aren’t thought to be gluten related.
Thanks so much to you both for writing and posting such a ‘spot on’ article. It brought tears to both my husband and my eyes. I recently moved countries and have been finding it hard as I am in a country less aware of CD, with fewer products and am experiencing a lot more gluten accidents. In all honesty I thought I was going mad but after reading this article it has helped make a lot more sense as to how and why I have been feeling the way I have. I am definitely sharing this! Can’t wait to read more posts……
I just stumbled upon this post after having been hospitalized for a celiac attack – the first time in years after being mostly symptom free.
I’m in tears reading this over and over, as I remember how my ex, the love of my life for over two years, used to roll his eyes whenever I would say I was too tired to go out to the bar we used to frequent. I was terrified of restaurants, terrified of his cooking for me in his kitchen where wheat flour was used (we were living in Paris…city of wheat), sick of feeling as if I had to make excuses for leaving dinner parties early to go hurl up the meal. Though he tried to understand, he never truly understood the pain and the tiredness that I endured on a daily basis since I would cover it up with a smile and laughter. He tried to comfort me, but when I flinched at his touch, he took offense. He would retaliate against my “don’t touch me!’s” by saying it was all in my head and I should relax and try to not think about the pain. My celiac disease was too much of a burden for him and it was one of the major causes for our breakup.
I feel so happy for the writer of this article for having found someone who deals with her disease so well. It is truly beautiful.
Thank you so much for posting this, it just made my day so much brighter.
Sorry you’re hurting Kate, but glad we brought you a bit of comfort. Hang in there.
Wow I understand me finally! I have always felt like I’m a crumpled mess and constantly in pain, the aching is unreal and feeling sick and feel so tired I have to use all my strength to peel myself from werever I am I have 3 young children and some days they are literally my only strength ive had illness after illness chronic hives, allover itching and many more sympotoms that could drive a person mad finally my doctor suggested something other than ibs and after reading this I feel like I finally have an answer put into the best words imagineable and because I’ve always felt so bad for my partner and he read it and understands a little more to so thanks so much and im looking forward to a gluten free life (“,)
Thank you for finding the words to explain exactly how I feel. I expected after finding out I had coeliac and managing it (10 years ago) I would go back to living a normal life – that wasn’t the case. An amazing read – Thanks again!
Thank you,
I feel the same way. My immediate family is understanding, there are times I feel so bad for my family as I give them such a hard time. All my life I was easy going and go with the flow. Ever since I started getting sick it hasn’t been easy. I went to different doctors and specialists trying to figure out what is wrong with me. Four years of unknown fatigue, eczema, muscle pain and forgetfulness
I am still struggling, it is almost one year since I figured out it was gluten.
I figured out the gluten on my own without the doctors, watching The Today Show. After I went gluten free for a week. I researched it and did not want it to be. So I was in denial for couple months. But not getting any better, I told myself this is it, this is what I have to do. There is no pill nothing else will make me feel better but myself and what I eat. I went to a homeopathic doctor in December and she suggest taking vitamins and probiotics, which I take faithfully.
Taking it one day at a time. Thanks again for your information and explaining me.
HILDA, did you not go to a doctor at all?
Gluten Dude, I had an endoscopy because I was having such gas, bloating and strange BM, and my villi were found to have atrophied. My doctor only said, “malabsorption” and I was left to figure things out by myself. Since I have been gluten free for 3 months now, I don’t think a blood test would be particularly effective. But I remember distinctly Dr. House in the TV series mentioning celiac from a biopsy of flat villi. I don’t want to go thru 6 weeks of gluten hell just for documented proof. I guess I’m wondering what I shud do.
I have suffered ChronIic Urticaria for 5 years,I went to the hospital for test and biopsy and was given antihistamines,
steroids, antibiotics medication. but when i came across Dr FRED ADU JUNIOR herbal cure which did not only cured me of HIVES but for 2 years now no sign of it coming back.so many people have been talking of Dr FRED ADU JUNIOR on the internet about his powerful herbal cure. My advice to you is to write via his email (drfredherbalcuringcenter@yahoo.com) so you can purchase his herbal cure for hives like i did and get your everlasting relief.
The only thoughts in my head after reading this blog: What a perfect description of my life. You must have been inside my head.
From the bottom of my heart…thank you.
Made me cry it did.
This is the main reason I am working on a go fund me for a car. I do not know how I will feel on what day. I continue being sick gluten free. With a good car I can choose to go out on my good days. Rides I can get but are so limited and I never know how I will feel that day. I can go walk on the beach if I want to. I can be more me. Instead of being depressed sitting on the computer pretending I am not sick.
If anyone does help one can search on go fund me on the terms Barb, car and 14047. I did put the link in the website info of this post.
I used to fix the old car I am giving to my son the rust is so bad I would get sick doing it. I no longer want to do it. My facebook friends have helped a great deal. I thank them.
I have pain much of the time. Cathy suggest I may now have fibro. I do not know. Docs that I went to knows nothing about this stuff. I got as good as I am now due to only eating 4 foods. I am down about a hundreds pounds now. Massive weight loss. I got saggy skin now. I eat more foods and I am sick again. I am doing paintings for perks for the go fund me and that is not helpful in the fumes. I am going to do them anyhow no matter how I feel because I need a good car not a junky one many suggest that i get that is 10 or more years old. IN WNY they often have hidden rust in them.
Forgive me but this post describes my life. I have went about no where for any reasons because of the illness.
Well, it is nice to see that others are having the same symptoms as me, but wondering how many others are stuck in a state of limbo with not knowing what they have if they have any thing at all. For the past 4 to 5 years I have had a chronic cough from late fall to early spring which was originally diagnosed as asthma. One year it was bad so they pumped me full of steroids and shortly I found myself in the hospital with rhabdomyalosis. The next year the same thing happened. Then I went to see an allergist who ran allergy tests and came up with nothing. After listening to my symptoms he diagnosed me with silent reflux. He put me on meds and wanted me to start a very low carb diet, which recent studies showed that it drastically helped reflux. Within a month of eating no more than 20 grams of carbs (I eliminated gluten as I was not going to waste my carbs on high gluten products)I started to feel way better and starTed to shed weight like crazy. This was in November a few years ago. October the following year my 4 year old was diagnosed with celiac disease. I then decided that i should be tested with the results that i had gloing gluten free. The first time I was told to eat a normal gluten based diet and get the blood test after a week, this was after being gluten free for a bit over 10 months. I did not think that was correct so I checked with my gastro doctor and he said 4 slices of bread for a month. The 4 slices were extremely miserable and after the month I had the blood test to which my primary doctor said that it was negative and I dont have celiac disease or any gluten based issues. I then went for a 2nd opinion and was told to eat a slice of bread a day for 8 weeks then have the biopsy. the first week or so went by ok, with some abdominal discomfort. I then had to have shoulder surgery to which I was put on hydrocodone for about 5 weeks or so (the first 3 weeks I was taking the hydrocodone at least 2 times a day, the remaining time I was only taking it at night). I had noticed that the hydrocodone has suppressed all abdominal discomfort and had suppressed the diarreah that had started shortly before my surgery. After I was done with the hydrocodone all the symptoms came back with full force. While on the hydrocodone I did have some symptoms such as feet, ankle and calf swelling, confusion, weight gain, bloating and some severe fatigue. After the hydrocodone some bad abdominal pain, a quite a bit of diarreah, social withdrawl,chronic cough,inability to breathe through my nose, mild depression, more weight gain, mood swings and my knees hurt more than they did before (to which I was diagnosed with arthritis in my shoulders and my knees, and I am not even 40 yet). I had the biopsy and the results were “Increased intraepithelial lymphocytes with normal villous
architecture can be seen in symptomatic, latent or partially treated
gluten sensitivity (celiac sprue), dermatitis herpetiformis, and
first degree relatives of gluten sensitivity. Other associations
include systemic autoimmune disorders and NSAID use.”
My concerns are was 8 weeks long enough, and was it enough gluten. Did being on the hydrocodone have any negative impacts on the test. I was also instructed to redo the blood tests, but I had quit eating gluten again after my biopsy which has now been close to 2 weeks.
I also had the genetic testing done and for the DQ beta 1 it came back as 02:02,03:02 DQ Serologic Equivalent: 2,8
For the DQ alpha 1 it came back as 02:01,03
My daughter tested positive for Celiac, and not sure if I need to go back onto the gluten again to redo the blood tests as I have been off of gluten for almost 2 weeks now. Some symptoms are finally starting to go away, but it took almost the full 2 weeks for that to happen.
I’m also another Savannah southern belle and it was so nice to come across your post. I’ve been gf for five years. The doctors all told me nothing was wrong and after much testing and multiple doctors visits I finally took matters into my own hands. I’ve done been GF and DF and I feel great!
I’ve become the person who always has benedryl and a epin on hand. I admit when I get accidentally gluten I’m not a very happy person and usually feel like death for about a week. But, I’m getting better at being more careful. Plus I’m lucky to have a great support system of friends and family that look out for me when eating out. Since I have brain dead moments and forget to question or inform someone of how serious it can be. I’m lucky to have them.
I’m curious does your guest Miss Dee Mean have a blog as well or a site for questions?
Thank you for writing another wonderful piece.
~ Bunny
I have recently been diagnosed with celiac and gastroperesis. I started with the pain about 6 months ago but had suffered with diarrhea for years. I am doing liquids only right now as any food is very painful. Has anyone else experienced this delay in symptoms? I used to have an iron stomach and now a cup of water causes mild pain, food can double me over.
Thank you – I am sitting here tonight with a belly that looks like a jiffy pop popcorn, a sparkling toilet because I’ve vomited for the millionth time this evening and a headache ripping my right temple in two. In the midst of this pity party and rancid breath I needed to be reminded I’m not alone. Thank you cause it’s feeling really lonely lately