People Who Don'T Understand The Seriousness Of Celiac

[sandsurfgirl]

I just got my diagnosis today with a positive blood test and emailed some people for support. A friend of mine just emailed me back saying "I looked it up and it doesn't sound like a big deal."

I am so hurt right now at reading that. I've been crying all day long. I'm 40 years old and it took me my whole life of being sick and having unexplained illnesses to get diagnosed. I am so sick right now with dizzy spells from the latest attack that sent me to the E.R. and finally prompted a doctor to do a celiac blood test on me. I am nauseous and I'm struggling to get through each day right now while I take care of my 2 small kids. My gut feels so inflamed, and I am alternating between C and D all day long, sometimes going to the bathroom 5 times in a couple of hours. I had to take my kids to gymnastics this morning and started getting dizzy spells during the class (my toddler is in the mommy and me class). I was terrified that I might pass out during the class and had to grit my teeth and bear it until it was over. Then I had to get myself and the kids home and hope and pray that I could drive okay because there was nobody around to drive us and my husband works an hour away.

Before this attack I have been SO sick with shortness of breath, which was blamed on my asthma, yet the medicines wouldn't control it. GERD that the medicines wouldn't control. Hypothyroid symptoms even though I'm on thyroid medication and my labs are normal. Nausea after eating. Diarrhea for no apparent reason that would last for days then constipation. Well you all know this. You've lived it. The worst has been the overwhelming anxiety attacks I've had since September. I have such a great husband and kids, and the ONLY bad thing in my life has been my health, but I have developed full blown anxiety. Only a few days into gluten-free diet and the anxiety is GONE!!!

I've only been on the gluten-free diet for a few days and I know that it will take time to get better. When I had these attacks in the past, and was misdiagnosed as IBS, it took a week or so to feel better and function again and that was on gluten, so I'm hoping for a fast recovery this time with a gluten-free diet.

I can't help but wonder how much damage I have to my poor intestines and how much it will heal considering my age, too. I mean 40 years of damage is an awful lot.

I emailed her more info and she apologized, but I'm sure she won't be the last person to have this reaction.

[mysecretcurse]

*Hugs* You've come to the right place.... I'm so sorry for the pain you are in now... we've all been there in one way or another. I am only 27 now but it took 25 years of suffering for me to figure out what the problem was so while it isn't as long, I understand that frustration. The good news is NOW YOU KNOW. Which means now you can begin healing and be free. Discovering I had celiac disease was the best thing that ever happened to me. I've reached levels of health I never even knew possible. I've LEARNED more about health and the body than I've ever thought possible. This diagnosis is a miracle for you, because now you can heal. Even if it doesnt seem like a miracle yet it will one day. You can change your entire life. You can have hope now. You are going to become healthier than you ever imagined. Just hang in there and dont give up!

Don't worry about the reactions. They are frustrating as hell for all of us. It's just our duty to help educate the world out this. And it works, trust me. When I first found out I was celiac I had a lot of really frustrating reactions ("Surely a LITTLE bit wont hurt you! COMe onnn!" etc) but now all of my friends and family members are well educated about celiac and spread that awareness on to others. We can make a difference in the world.

[tmbarke]

I started feeling better after a few days - then like ditzy dumbo thru withdrawls...which you're gonna want to have someone help with the kids during this as you could possibly do something dangerous like turn the stove on and pour pancake batter right on the burner....I know it sounds far fetched but have someone nearby you can call to make sure your children are in good hands or someone to oversee for a few days......I went thru them for about 3 or 4 days and things got to be mindless.

After it was over - I was feeling rather renewed.

This forum will help to keep your sanity about foods (including the shopping forum)

Although its best to be on whole foods (4 basic food groups) you'll learn later that more things are safe.....Coffee mate liquid flavored creamers say gluten free on the bottle if it is for that flavor.....you'll learn to find the safe ham, the safe candy, the safe spaghetti sauce, the safe taco seasoning for safe tacos.....so don't fret now - cuz you can still look forward to flavor in foods.

It wasn't hard for me to communicate about my new restrictions - it's educating them that gets frustrating......like my mom knew and was very supportive - but didn't understand why I couldn't have the chicken wings for Christmas snacks (thinking it was meat and it was ok) so I pointed out that they were 'BREAD-ed'...lol - she just didn't look at it that way.

For meetings at work - I feel like I'm 'asking for special treatment' if I request something 'other' than donuts and cookies for the meetings....."OMG! What do you suggest I get?!"......my frustrated response is...just get fresh fruit and a veggie tray. Little do they know that that is what goes FIRST at the meetings by everyone! And I have reactions from Maxwell House coffees so I asked if they could start stocking Folgers instead....Many times they still send back Maxwell House to our office....I just keep my own canister of Folgers in my desk for when that happens....

You'll learn more as time goes on.....but you matter too! So never forget that.

Stay positive even when it seems frustrating. We've got your back!

T

[Jestgar]

I emailed her more info and she apologized, but I'm sure she won't be the last person to have this reaction.

No, but you weathered this event, and you will do the same the next time it happens. No one really understands until they've started living this way, although some people can have a better understanding if someone close to them has gluten intolerance.

Don't put the blame on your friends, we were all brought up believing food couldn't possibly hurt you, and, so what if you can't eat bread. It's not until you start reading labels that you realize how much stuff has wheat in it. Be as patient as you can, even though you're still really sick, and hopefully most of your friends will 'get it' and you'll end up with a stronger support group.

[luvs2eat]

I have a friend who is wonderful about knowing the ingredients of what he cooks so he can make sure I can eat it. I'm so touched when he does this. But we had a conversation last night about eating in restaurants ... even when they have a gluten-free menu. I explained to him that I can have a lengthy conversation w/ the server or the manager and even the chef... but when that kitchen door closes, I am absolutely at the mercy of the people behind it to REALLY understand and not use a contaminated spoon or cooking pot. It's almost always a crap shoot (pardon the pun!) and why we dont' eat out very often.

So many of my friends "get" it... up to a point... heck... all these years later and I'm STILL figuring it all out myself!

[TrillumHunter]

Just to give her the benefit of doubt---

Maybe she meant it isn't such a big deal in that it's a dietary change not medication/daily injections/chemo? Do you see what I'm saying? Yes, dietary changes are tough, but they aren't chemo, right?

I was so glad when I was diagnosed because I had been told it was probably MS. Celiac was nothing to me compared to the diagnosis of MS. I felt like I was totally off the hook. I knew I could get better (and I did!) and I wouldn't end up in a wheelchair with my husband having to cath me every day.

Take some time to grieve, but then move on. You will feel better--maybe sooner than later! Lots of us notice changes in days when we start gluten-free eating.

Don't worry about helping anyone else to understand. Just take care of you and your husband right now.

Welcome to the club!

[6ft6]

Hang in there. I've been on the roller coaster for 18 months since my diagnosis and there are times when i really have felt like throwing in the towel. But it passes and you start to feel better gradually. I found that a round or two of steroids after a serious bout is the best way to get things going in the right direction. If your doctor won't do the research and work with you then go find one that will. I also take singulair and zyrtec daily. It really makes a difference in stabilizing your immune response. I haven't found a vitamin that i could tolerate yet, but i have found that my neuro symptoms are greatly reduced if I drink diet red bull each day - gluten free source of b6 and 12 in easy to absorb form. Lara bars are a critical staple you should keep with you for meal replacement.

Also, beware of other intolerances. I have found soy to give me worse symptoms than gluten, and casein is not far behind. Strip your diet down to plain fruits and vegies and meats with no sauces or seasonings for a while and you will improve rapidly. A final caution: check all your soaps, conditioners, lotions, makeup for hidden sources. Hand soap with E added was killing me, and my wife was using a hand lotion with E that was finishing me off. Eliminated those and improvement was rapid.

[gabby]

Sorry to welcome you to 'the club', but very happy that you've got a proper diagnosis and that you can begin your healing journey.

What I've learned over the years about 'telling' people about my disease, is that most people really don't get it, and I don't expect them to. I used to think people just didn't 'get' celiac disease, but I learned through experience that most people don't 'get' most diseases. Try explaining lupus or type II diabetes or MS or something like a dairy allergy to most people and be prepared for the most bizarre responses. And I will admit myself that until my doctor uttered the words 'celiac disease' I had NEVER heard of it, never knew anyone who ever had anything like it, and didn't understand the true depth of the disease and all its complexities for two years following my diagnosis.

But it will get better over time.

And...as a fellow Italian, I can give you this bit of advice: take your favorite pasta sauces and use them over steamed arborio rice. It is a little different, but the sauces taste just as good on rice. If you are making your own meatballs, instead of breadcrumbs, you can also toss in some steamed rice. It'll be different..but still good because the rice will help things stick together and help to absorb liquids in the meatballs. Also, try your sauces over ribbons of stir fried zucchini. It is really good. Just take fresh zucchini, wash them. Then using a vegetable peeler, peel ribbons of zucchini until there's nothing left. Heat up a bit of olive oil in a frying pan, add the zucchini ribbons and stir-fry for about 3 minutes. They'll be tender and delicious. Serve your fav sauces over the ribbons and enjoy.

Oh.....and if you like polenta, you can do a million things with polenta....

Best of luck!

[psawyer]

I can't help but wonder how much damage I have to my poor intestines and how much it will heal considering my age, too. I mean 40 years of damage is an awful lot.

I was diagnosed two days after my 46th birthday. The endoscopy a week earlier had shown severe damage to my villi. Healing took time, but I did heal. A follow-up endoscopy five years later was normal. All of my symtpoms have cleared. The only lasting issue is osteoporosis, a result of years of celiac-caused malnutrition.

Your gluten-free future is bright!

[tarnalberry]

Maybe she meant it isn't such a big deal in that it's a dietary change not medication/daily injections/chemo? Do you see what I'm saying? Yes, dietary changes are tough, but they aren't chemo, right?

This is what I would have assumed.

Because, it's my opinion, being gluten free for over six years, and dairy free for over five, it's not "that big of a deal". That's a relative phrase, of course, but it's not "incurable" (in so far as staying gluten free puts the autoimmune disease in complete remission, and celiac is the ONLY AI disease where we know the trigger and can maintain remission) and the treatment doesn't have a whole host of nasty side effects or outrageous $300/month pills.

Of course it takes time to adjust, and figuring out how to not get contaminated, how to navigate restaurants, how to deal with family members, and being out and about is difficult. You can think of those as our treatment side effects. But they are ones that one can - eventually - significantly minimize.

It is a VERY challenging transition. It is a very huge change in one's life, and one's way of looking at the world! It's also a very huge loss, that we need time to grieve. But not everyone is going to understand the details of the transition process, and there's not a whole lot we can do, because I don't think it IS fully understandable until you go through it.

[sandsurfgirl]

I've been on other message boards before and this is by far the nicest group of internet people I've ever met. Thanks so much for all of your kinds words and words of wisdom. And the italian food ideas!!!!!

I am so grateful that it's a diagnosis with a dietary "medicine" instead of tons of drugs or worse, nothing. It's all new because I got my diagnosis yesterday so there are a flood of emotions going on and so many questions. If I hadn't found this board, I would be a total wreck.

I must be having withdrawals now because I do feel a bit of brain fog, and in the morning dizziness. Yesterday that went away by around noon or so. It's still morning here so we'll see how long it lasts today.

I guess it's just like any other cleanse type of diet. You need to go simple so the digestive system can rest and heal.

[woodnewt]

Sorry to say it but you will commonly come across people like this, and worse. And the, "I know someone who's celiac and he/she says it's okay to eat a little wheat now and then." Or the, "there's no way wheat can be bad for you!"

In this day of prescription based medical care, people have a really hard time understanding that diet is the prescription for celiac, not medicine, and that "healthy" whole wheat is the "bad guy." It boggles the mind for a lot of people and some will refuse to accept it.

It's really frustrating and irksome, but you're going to have to learn to deal with it. Also, someone who reads up on celiac and sees only that you have to avoid gluten, will have no idea of the real life implications of living with this disease. Aside what celiac can do to your social life and food budget, it isn't avoiding gluten that is the problem, but avoiding CROSS CONTAMINATION and hidden gluten. It's so ridiculous and convoluted that it's maddening.

[Jennifer2]

I don't think anyone who doesn't have to deal with it day in and day out can truely understand the complexities of the diet.

BUT, I do present it to people as "not that big of a deal". Most people that I've told about it get overwhelmed by the diet. My response is usually, "it's really not that big of a deal. I just have to read ingredients. If I need to buy something other than fresh foods, I usually try to buy kraft, con agra, or unilever because they'll list the ingredients I can't have. There's virtually nothing I can't find or make a gluten-free alternative too." I find that if you put a more positive spin on it, people are more receptive. Plus, I needed to put that spin on it for myself when I was first diagnosed!

I do get the people (mainly co-workers) that don't understand that I can't just eat the toppings off of the pizza and not the crust or that I can't just have a little bit just this once, but I don't let them bother me, they just don't understand the diet very well. They're not mean about it, they just truely don't understand.

[Welda Johnson]

I hope you're feeling better. I'm 65 and have had Celiac symptoms since age 8, including severe and chronic asthma, so I can identify with your post. I've been totally gluten-free for 8 years now and am feeling so much better. I also must avoid all milk & dairy, egg whites, yeast, casein, whey, msg, and maltodextrin and modified food starches made from foods other than corn, so I am always being careful and reading labels endlessly. I hope that you feel better each day, and please know that we will be thinking of you and hoping for your full recovery. Welda

[triplbjt1]

Wow I didn't know that so many would have this...

I am almost 52 and my blood work came back positive about a week ago and I am waiting for my Colonscopy and Endoscopy to be done in March 2010... I am also having an ultrasound of my upper and lower abs...

Years ago I had severe dizziness with the roomm spinning and was told inner ear... Later I was diganosied with IBS, I have arthritis of the face (TMJ).... So tired all the time even though I work full time and when I get home I don't want to cook or anything... Thank God that it is only myself and my husband now our kids are all grown and moved out...

I also found out about 4 years ago that I have Sjogrens which is another auto-immune disease.. It dry's out your skin, eyes, lips etc.... So who knows if this has anything to do with Celiac Disease...

I am so thankful that I found this site...

I am really nervous to see how bad my intestines are and if I have any other serious issues since it has been a long time coming for this diagnosises...

[Gemini]

Wow I didn't know that so many would have this...

I am almost 52 and my blood work came back positive about a week ago and I am waiting for my Colonscopy and Endoscopy to be done in March 2010... I am also having an ultrasound of my upper and lower abs...

Years ago I had severe dizziness with the roomm spinning and was told inner ear... Later I was diganosied with IBS, I have arthritis of the face (TMJ).... So tired all the time even though I work full time and when I get home I don't want to cook or anything... Thank God that it is only myself and my husband now our kids are all grown and moved out...

I also found out about 4 years ago that I have Sjogrens which is another auto-immune disease.. It dry's out your skin, eyes, lips etc.... So who knows if this has anything to do with Celiac Disease...

I am so thankful that I found this site...

I am really nervous to see how bad my intestines are and if I have any other serious issues since it has been a long time coming for this diagnosises...

I wasn't diagnosed until I was 46 and I was almost dead from malnutrition....really. I had extremely positive blood work and declined the endo so I could immediately go gluten-free and heal. I will say that even at an older age, you can most certainly heal. I have and feel better than I ever did at 30. So, do not worry about all the damage and that you'll end up really sick with cancer or something. Doctors love to scare people. If you follow the diet religiously,

you'll do fine. Damage can be reversed totally so shoot for that.

As for your dizziness and the Sjogren's, they are both related and caused by delayed diagnosis of Celiac. I was so dizzy at times I had to sit on the floor and wait for the spinning to stop. I also have Sjogren's, with extreme dry mouth and eyes.There are things you can do to alleviate the symptoms a bit but following the gluten-free diet made the most difference. I still have problems connected to the Sjogren's but the symptoms have improved dramatically with the diet. Have faith and keep those positive thoughts because it really helps.

Do not freak out about the dietary changes, either. Going and staying gluten-free has never been easier with all the products on the market these days. I have been able to duplicate almost everything I ate before going gluten-free,to it's gluten-free version, with little problem. If you need help with the food, just yell and we'll help out!