Lynayah

Hi everyone, I posted a question last week about having recurring pain on my left side under my left bottom rib.Sometimes it is also mide left back pain. It happens when I get glutened and lasts for a few weeks. I started doing some research and was wondering if it may be a hiatal hernia. It started after I had my daughter (the same time the celiac started) It seems to correct itself but it does take a few weeks. It seems when I get Glutened I start to bloat and I initially feel a stabbing pain under my ribs that subsides have the gas is released. The pain turns duller and is just annoying because it also seems to affect my upper back. Anyway just wondering i anyone has any experience with both Celiac and a hernia.

Thanks

I have a Hiatal Hernia, and I used to get pain in the back shoulder area. I have no idea if there's a connection between that and a hernia, however.

When the doctor suggests that you walk around carrying a sign that says "Will work for Pampers."

Seriously though, when the doctor takes blood tests then looks only at celiac and not at gluten intolerance -- only at IgA and not at IgG.

Great thread!

You are an inspiration to us all!

If you suffer from arthritis yet want to knit, I found an interesting video on youtube.com today. Search under

BRAVO!

I've been getting brave and knitting at casual parties -- the ones where there's tons of food everywhere, all glutened. It really helps keep me from feeling sorry for myself.

From what I was told, Starbucks soy milk is not gluten-free. If memory serves, I called the company, although that was maybe 8-10 months back. Things may have changed since then.

Usually almost instantly to 20 minutes later I'll have a sore stomach - I call it a "punched in the gut" feeling, and it usually induces a run to the loo, even if not D.

A few hours later to a day later I'll have a bad headache, one of those vice-like grip headaches, with or without back-ache. Around this time I'll also start getting random pains in my wrists, knees, legs. I also get muscle twitches/spasms/cramps.

2 days to 4 days later I'll usually have massive amount of D. Sometimes preceded by C.

So yeah, highly variable Oh, and I'll have at least one incident of crying over nothing, or tingling in my hands or anxiety. If I start crying over nothing even without any other issues I know I've been glutened.

Crying, anxiety: I can so relate! My husband says he can tell if I've been glutened almost immediately afterwards.

For lack of a better term, I turn into a COMPLETE witch. Oh, how I love my husband for having put up with me.

For a couple of years (or more) before I was diagnosed, I was extremely difficult to live with-- not impossible, but (at least for me) a lot more difficult.

I had heightened sensitivity about everything. It was really tough, especially since I've always been known for being understanding, accepting, loving, caring, nuturing . . the whole bit.

Not with severe gluten symptoms, though. With my reactions to gluten, I was a different person.

When I look back on it, I can see so clearly how it was gluten.

Thank heaven, I am a different person now. Thank heaven, people around me stuck by me . . . at least most of them. Thank heaven, I found a doctor who understood and diagnosed me CORRECTLY.

I have said this on the forums here so many times, but I have to keep saying it:

It kills me to think of all the other people out there who could get to the positive side of happiness, if only they changed their diet.

It kills me to think that they do not know what their problem is.

It kills me to think they are being told they have countless other problems when it is, in fact, gluten-intolerance.

I am doing all I can to spread the word to others, and I am always looking for more ways to help.

All of us here can make a difference in the lives of so many others, if only we keep spreading the word.

Thanks for letting me rant!

this is amazing. when I first was diagnosed and my anxiety was sky high, I just came up with the idea that I should learn to knit to keep my mind in a certain state. someone at my work says she will teach me. I have the needles and yarn sittin in my car for several months now.... haha. maybe its time to put them to use... Thanks!!

Knitting will help you, I promise, promise, promise!

There are also some outstanding DVDs out there about how to knit -- if you want more info, let me know, but if I were you, I'd go with the person I know and then expand from there.

Everythihg happens for a reason. You are being drawn to knitting for a reason.

Do it! It will change your mind and change your life. If you want more information on the outstanding knitting community out there, let me know this as well.

Knitters are an exceptionally caring group of people. It's "a whole new world" out there for people who knit -- as corny as it sounds, it really IS a magic carpet ride.

Well, I can't say that it has helped at all with coping with a gluten free lifestyle... but I do love to knit!

I have started up a stitch 'n b*tch group in my local area and - as the organiser - I damn well make sure that we meet at a cafe that has lots of gluten free options. I need my gluten free cake when I knit.

You rock! I hope you'll post here how the group goes. Please let me know. I have a great interest in those wonderful S&B groups. It sounds great!

Hi, just wondering if and celiacs have had problems with corn, corn flour or any other corn products. Had it today...have a gut ache....but it could have been something else.

I do best if I eat organic corn only, and in moderation.

For me, within 15-20 minutes. BAM! There is no doubt I'm having a reaction. Big D. If I'm lucky, I catch it before I have to go home and change clothes.

I'll get delayed reactions, but I'm learning that, for me, it may be from another food that I may be sensitive to, such as egg yolk or soy.

For me it is variable. CC can hit in 1 hour or the next day and symptoms are D, bloating, sometimes cramps. D is generally one rather massive event (amazing how much can be stored in a GI tract. Next time I have a colonoscopy I'll just have a crouton instead of laxative) and the bloating takes 3-5 days to go away. Massive glutenization can result in the same symptoms, but also include stiff joints, brain fog, lethargy, muscle aches, and mood swings. These other symptoms can take 5-7 days to go away. I, like a lot of people, am self diagnosed for gluten intolerance. My symptoms started last fall after getting the flu, and my blood and other tests were negative but also after I was gluten-free. A really bad gluten hit can cause the area around where my rashes were to be itchy; I had probable DH for a few decades that went away 6 months after gluten-free.

"Next time I have a colonoscopy I'll just have a crouton instead of laxative" -- lauging so hard here I can hardly stand it! Great line! And yes, that crouton would indeed work wonders. Thank you for the smile.

No, I've been spinning since I was pretty small (mom's a weaver and branches out to other fiber jazz some). I have a double treadle Schacht and a handful of spindles. Which is use varies... travel is always a spindle, but I use them at home some too.

You should learn! Ghandhi was right that the world would be a better place if we all spun daily. AND, you can make really fun/weird/playful yarns just like you want for that _____ you're going to knit/crochet/etc.

Thank you for your post. I definitely want to learn someday. I love your reference to Ghandhi. Thank you -- your reference is a new piece of information for me. I agree, and I also think the world would be a better place if we all knit each day.

There's a real connection between knitting and inner peace. It's been shown that knitting produces the same brain waves as meditation. For me, it has made me a MUCH better person. Knitting has been a heaven-sent blessing.

Scuzy,

PS: I do not have celiac. I am HIGHLY gluten intolerant -- I am told I am more sensitive to gluten than most, including those who suffer from celiac.

I just wanted to add this info because you refer to wondering if you have celiac in your posts.

So, if you are gluten-intolerant, it doesn't necessarily mean you also have celiac disease.

Wow, so is it a proven symptom to have a horrible memory? I never even thought of that as a symptom. My memory used to be good, but the past few years, when all my other symptoms started it has gotten bad. I can't even remember when my friend visited me, or when a friend slept over 6 months ago, what I just heard in class.. ect... And I'm only 21...

Scuzy,

Brain fog is very common, but with the severity you describe, you might want to ask an expert.

Just wondering: Do you have other neurological symptoms as well? Do you suffer from celiac in addition to gluten-intolerance? Have you gone through testing, etc.?

Providing contact information, including telephone numbers, is permissible, provided the self-promotion rule is not violated.

We're good then. Thanks, Peter.

As I sit here remembering, I've remembered a few more symptoms I had:

When I'd type, I'd make TONS MORE typos than what is normal for me. Sometimes I'd even write one completely different word when I'd mean to write another -- instead of writing "I'm going home," maybe I'd write "I'm going town."

Sometimes I'd talk the same way. It was as though I had a mini stroke (which I hadn't).

I'd forget words far more frequently, and often, it was hard to answer questions. If someone asked me "Where are the postage stamps?" I'd have to get up and show them because it was difficult for me to put the answer into words.

I had a very tough time sitting still or focusing on things for prolonged periods. Some of the way I acted mimed Attention Deficit/Hyperactivity Disorder -- back then. Now it's gone.

Years ago, I gave up knitting because it was hard for me to focus on it. Now I knit like the wind and have fallen so in love with it. (I still drop stitches, but so does everyone!)

It was horrible pre-gluten-free. I blamed it on age. I blamed it on stress. I blamed it on everything but gluten.

It just breaks my heart to think of all the wonderful folks out there who suffer the same way. They are walking around beating themselves up for "falling apart" and thinking they are helpless to do anything about it, when all it takes is a change of diet.

Anyway, I hope this helps clarify brain fog a little more.

Sherry:

"Brain fog" ... it's something you know you had when it's no longer there.

It's a feeling of not not being very sharp, feeling kind of fuzzy, and generally tired.

But you know more what is was when it's no longer there.

For me it was a vague feeling for a long time, but in the year before my diagnosis, it got so bad that I'd struggle with even the most simple things.

For example:

I'd drive to somewhere I'd driven countless times, and I'd forget how to get there.

I'd work on my computer and try to preform a task that was once easy (like downloading onto my iPod), and I'd get so confused that I'd have to have my husband help me.

I'd misplace things far more often than I do now.

Because I'd forget things so easily, my sense of urgency heightened. Things like I'd find myself interrupting people as they spoke so I wouldn't forget what I wanted to say.

It's gone now, thank goodness . . . however, it does creep back a little bit (just a little) if I get glutened.

Crazy.

I just posted a link under pre-diagnosis to let folks know that the University of Chicago is having a free blood screening this October. I also posted the telephone number to call for registration. Is posting a telephone number allowed? Thanks.

If you live in or will be visiting the Chicago area this October: The University of Chicago Celiac Disease Center will have its annual free blood screening & Ask the Experts Panel on Saturday, October 9, 2010, 8:30 AM to Noon. This is a very big deal

Anyone here going to any of the Stitches conferences this year?

I am going to Chicago and Hartford, and I'm hoping it will be easy to find gluten free food.

Chicago will be okay. I live close to Chicago, will drive and can pack my own food.

Hartford, I'm flying and I've never been there.

I do that when I'm walking the dog. Only positive thoughts. If I can't think of happy stuff, I make up a story or count how many people have pink flowers or Halloween decorations, etc. After a few minutes, the bad stuff is gone.

It's so cool how well it works. At first it was a challenge -- it is amazing how easily negative thoughts can become a habit.

I don't knit specifically to help me cope with gluten-free - I'm fairly at ease with gluten-free. But I am also an avid knitter

Because I took up knitting after being diagnosed, I can definitely say it helped me cope with going gluten free.

Before being diagnosed, I could eat anything and everything (or so I thought). I had lost over 100 pounds (not easy, I'm not one of those skinny gluten free gals) and learned to keep it off.

I'm super, super sensitive and found I did best by sticking to meat, fruit, vegetables and certified gluten free whole grains.

I'm a foodie, and like so many others here, my family members are foodies, too. EVERYTHING revolved around food.

It was a real challenge for me to learn not to feel sorry for myself at first. I was cranky, too, with lots of negativity.

Knitting helped me so much. It relaxed me, and it also gave me something to do at family gatherings while everyone ate. Even though I could eat gluten free foods, I needed a diversion to keep food from being the most important thing in my life, especially since I'd gained 15 pounds during my gluten challenge. Augh!

I told myself that my knitting time also has to be my positive time -- that is, while I knit, I was allowed to think only positive thoughts. This was difficult at first, but I kept at it, and eventually the act of knitting became an almost immediate way for me to enter into positivity.

They say that the repetitive motion of it helps produce the same brainwaves as meditation does.

For me, it works . . . except for the times when I want to throw the project out the window because I've dropped a gazillion stitches that day!

Some, but I'm actually a spinner. So I make the pretty yarn...

Oooooh, I'm envious! I want to learn to spin eventually. Do you use a wheel?

Has spinning helped you cope with living a gluten-free lifestyle?