Physical And Emotional Trama

[MrsG]

Hello,

I am a newbie- diagnosed on 9/11/07 but I have always had many heath problems (migraines, anemia, hiatal hernia and on and on). For me it has been a vomitting issue and chronic mirgraines until the list kept developing to the point of chest pain and constantly being tired yet unable to sleep or rest.

I left the GI's office on 9-11-07 with a little brochure with nothing else to follow up on he said just follow the diet and don't worry about the arm pain or the hiatal hernia if you just remove the gluten it will go away. Yeah- I came home and followed what ever was on that list but the list didn't say that cross contamination could make you sick nor did it say what is other forms of gluten-wheat. I continued to thow up and my husband said what did we do wrong we followed the list? Then I contacted Barnes and Knoble for books and the internet to be my own doctor (so to speak). I started the diet on Monday after a terrible spell of throwing up and crying for no real reason, the muscle aches and feeling of dizzy (stuff I had always thought to be "in my head").

It is to the point that I am so scared to eat at all (as it is I never really did have much of an appitite)-

It is also the emotional trama that goes with this (I never know when it will hit me nor what to do when it does) I get scared and my heart feels like it is actually going to jump right out and I will have to catch it.

I realize that it is going to take a long time to feel better as I have symptoms for as long as I can remember (childhood and I am now 38). They have recently sent me for more test because my blood pressure was very low and my heart beats irregular. In addition, the test is checking for cancers and to see if I had a heart attack that I man not be aware of.

I am sure that I am not the only one (duh) scared of even testing to see if something will make them ill but I am always scared to even have a bite of stuff on the safe list. I do eat a handful of stuff that I have not thrown up and if I keep it down I consider it a Yeah moment - I end up just drinking water all the time thats what I had been doing before the biopsy.

Sorry to make this long and if I repeated myself somewhere here it is my mind going in space. I just want to vent and hear about anyone else scared of eating and the physical and emotions you are dealing with as well - or what your doing to make it thru the day. Again- sorry (I am in a panic mode and angry as well) Plus-I have been reading all the stories and I want to listen to your venting or ideas or whatever it is you wish. I want to be there for someone (I am tired of having a pity party)! I am looking toward helping and learing more. Thanks for listening.

[tarnalberry]

Whew. It does sound overwhelming.

The bad news is that there's no reason for you to expect miracles in three weeks. You'll be on the recovery road for months, at least. And that's *after* you've mastered the learning curve, which one little pamphlet isn't going to do.

Take a deep breath and start learning about the diet in an organized way. Keep a three ring binder, a PDA, or a notebook - whatever you need to do to keep yourself organized. Keep reading here, start calling companies, continue reading reliable books. Figure out the diet, and give yourself some time to get acclimated, without expectations in the health department right away. (So, you just have one small task and expectation and goal to start with - get the diet down. Give yourself at least a month to feel reasonably comfortable with it.)

Then, work on some of the rest of it. You may want to consider a second opinion with another doctor, to have a fresh look at some of the issues you're working with, particularly after you've been gluten free for six months or so, as it could be more than just gluten intolerance.

You *will* get through it, though it seems so very hard right now!

[Arpita]

It is very overwhelming (gluten free almost 3 years). It is natural to be anxious when food is making you ill. After a bout of illness, that happens to me even now. Anxiety is natural when you are ill. I have found that trying to not be "anxious" or "mad" at the anxiety helps. Also, that it won't go on forever, you will have days you feel well. Also, part of my symptoms from gluten itself used to include super high pulse/panic type of anxiety, and that particular symptom cleared up completely after being gluten free about 6 months or so. As for the diet, I would keep it simple. Eat plain meat (all unprocessed beef, look for chicken that says "may contain water" - nothing that says added "broth or other ingredients", all unprocessed pork except look at ingredients for pork loin), plain vegetables, plain fruit, and cook with non-iodized Morton salt (no dextrose) and olive oil, and have pans and a separate kitchen area for your cooking. I'm not saying that this should be your diet forever! But for me, it was less overwhelming to start with simple foods and not to have to worry about the lists in the beginning. When you start feeling better, it might be easier to tackle that task. Besides food doesn't look so good now anyway! It took a year for me to figure out ingredients and all. Even now, things always change. And, there is always the balance of being careful versus taking risks; looking for the cause of a current bout of illness versus accepting uncertainty. You will get better! It is tough, hang in there! If you have any questions, feel free to send me a message.

[MrsG]

Thank you for your warm replies- I am sorry that I did not send message sooner to say thank you. I was in the hospital (feeding tube for a few days and some additional test- mild heart episode).

I want to say thanks for the advise you both gave me. I can deal with the food part its more the "unknow" stuff and the physical & emotional episodes. Your replies have been very helpful.

My husband went out and got me a binder that includes files folders to keep list of safe and not safe or not clear names of things, and items that may have been made from an unsafe item, along with a "daily journal" and made copies of online prints and information forms and so on. He also got me sever books - and just listened as I was making sure that it all stays together (he is so sweet he even go a nice 'safe' cart to keep it in ) put those easy slides on the feet of it so that my arm will not drop a thing. And my Billie (I met here on this site), always checking in on me - (if I up or down). Thanks Billie.

Thanks to all of you here!

[MrsG]

It is very overwhelming (gluten free almost 3 years). It is natural to be anxious when food is making you ill. After a bout of illness, that happens to me even now. Anxiety is natural when you are ill. I have found that trying to not be "anxious" or "mad" at the anxiety helps. Also, that it won't go on forever, you will have days you feel well. Also, part of my symptoms from gluten itself used to include super high pulse/panic type of anxiety, and that particular symptom cleared up completely after being gluten free about 6 months or so. As for the diet, I would keep it simple. Eat plain meat (all unprocessed beef, look for chicken that says "may contain water" - nothing that says added "broth or other ingredients", all unprocessed pork except look at ingredients for pork loin), plain vegetables, plain fruit, and cook with non-iodized Morton salt (no dextrose) and olive oil, and have pans and a separate kitchen area for your cooking. I'm not saying that this should be your diet forever! But for me, it was less overwhelming to start with simple foods and not to have to worry about the lists in the beginning. When you start feeling better, it might be easier to tackle that task. Besides food doesn't look so good now anyway! It took a year for me to figure out ingredients and all. Even now, things always change. And, there is always the balance of being careful versus taking risks; looking for the cause of a current bout of illness versus accepting uncertainty. You will get better! It is tough, hang in there! If you have any questions, feel free to send me a message.

Thank you - for your invite to send a message to you it means much to me!

[darlindeb25]

Billie, no pun intended--go get the book called, "Gluten Free for Dummies"--you will love it. It will be so helpful for you. I love the "Dummie" book, they are so easy to read, so easy to follow, and so informative. I have been gluten free for 7 years and I just read this book this summer and I still read things I didn't know. It's a good read, also, The Gluten Free Bible is good.

Stay simple in the beginning, no processed foods. Rice and chicken breast, if you tolerate rice ok--simple things, very little spice, which you must be careful with anyways--if dairy doesn't seem to be a problem, try melting some cheese on top of your chicken, very tasty! A baked potato--just stay away from the processed stuff, like the gluten free noodles and such. Your tummy needs calm and lots of it. In the beginning, I ate cottage cheese and applesauce, honest. My tummy settled so well and I felt so much better. I too, had been sick for well over 20 yrs, I was 45 when I went gluten free.

Stay strong, you can do this. If you would like, you can email me.

[adiftime]

Lucy,

It was so good to hear your voice today. I have been very worried about you.

I know that you will get through this tough time. I know that you have the support of your sweet husband, myself and soooooo many others on this forum, that understand what you are going through.

Unfortunately, there is no quick fix to this, but it will come in time. It's different for everyone, but you will know when you start crossing that threshold of better.

Just know YOU ARE NOT ALONE!!!!

Love ya,

Billie

[missy'smom]

My heart goes out to you. My mom has gone undiagnosed for 20 years now and has some similar mental, emotional and physical problems. So I really feel for where you're at. When I started on this diet, I set aside the whole year with no other goal than to heal and get well. It does take time, I wish I could say otherwise, but it's SO worth it. Hang in there. Can we or your husband help you find a support group in your area? I think it could help. Mine always gives out great accurate information as well as recipies, demonstrations, and food samples.

[jenngolightly]

Your story sounds so similar to mine. I'm newly diagnosed, 37, and have the medical issues you listed and some different ones - gerd, migraine, hiatal hernia, allergies, vomiting, anemia, osteoporosis... My endoscopy was last Wednesday where my doc saw flattened villi. We're waiting for the official biopsy results, but celiac is most certain.

I started the diet that day and feel amazingly better in just a week!

However...I've been grocery shopping twice and have ended up in tears both times. Once to a regular store, and once to Whole Foods. I couldn't find much for gluten-free eaters.

I'm used to eating out or cooking from boxes or frozen dinners. I don't "cook" cook.

I'm eating salad and fruit and I'm STARVING! I tried eating plain chicken, but that made me vomit. I can't eat any other meats because they make me nauseous.

I keep reading things here and people say it gets easier and you learn how to shop and what to eat. But I'm starting from behind the starting line because I don't know how to cook.

It's depressing. It's sad. :-(

But I feel better than I have in 15 years!!!! :-) I'm more than happy to give up gluten for feeling this great. Even if I have to eat salad and fruit every day.

It's a paradox. I hate it, but I love it.

I like your idea of the notebook. I should try that.

Jenn

[longislandlady]

I, too, am a newbie. I was just diagnosed on 8/15/07 with Celiac and then re-diagnosed with refractive celiac disease on 9/13/07. I know exactly what you are going through. From July 5th through September 1, I lost over 30 pounds. I'm 5' 8", 46 years old and weighed 135 pound. I had total malabsorption from constant diarrhea. I had such muscle atrophy, I could barely walk. I went from being a healthy viral woman to skin and bones. I was dying with no hope in sight. I was in the hospital most of August (fed intravenously with PPN and lipids) until I found the right doctor. My gastro doctors in the hospital couldn't seem to help me. By the first week in September, my sister found a Dr. Peter Green, who is the director of The Celiac Research Center at Columbia University in New York. He saved my life. My gastro doctors at the hospital discharged me when they heard I had the opportunity to see Dr. Green.

Dr. Green has now been treating me since 9/7/07. Today (Tue 9/25/07), is the first day I can honestly say that I don't feel like I'm going to die. I can't believe how sick I was. I was also tired of the pity party (I've been saying the exact same thing!!).

Unfortunately, the gluten-free diet wasn't going to help me recover. Dr. Green put me on presdisone, Xafaxan and Endorcort along with many vitamins and minerals. This stopped my diarrhea, inflamation and the spilling of proteins. I've been on the medications for 2 1/2 weeks and I finally gained 4 pounds!! But, it's only the beginning. I'll be on these medications for a long time because I have severe (if not complete) villi atrophy in the small intestines. Dr. Green performed the endoscopy on 9/13/07 at Columbia/Presbyterian Hospital. Because of the severe nature of the villi, he is also doing many cultures for lymphoma. This is the scariest part. I should know on Friday how the tests came out. He does re-assure me that he feels there is no lymphoma. But, I'm still scared.

I see that you're from California. In case your interested, there are 2 Celiac Research Centers in California. The Wm. K. Warren Medical Research Center for Celiac Disease in San Diego, Ca and Celiac Sprue Research Foundation in Palo Alto, Ca. Maybe it's something to consider. I went to the one in New York and thank God every day for contacting them. It's a 2 hour drive and my insurance doesn't cover it, but I'm not ready to leave yet and I'm going to do whatever it takes to stay alive. I have a 16 year old son I love more than life itself. He already lost his big brother (many years ago)...I don't want him to lose his mom, too.

I'm here if you ever want to talk. Just make sure you're getting the right care. Regarding food, all I eat is meat, veggies, fruit, lots of potatoes, rice and 3 boosts a day (oh, and a lot of peanut butter)!. It's not bad at all. And to think that I was a total carb person (I lived on bread, cereal and pasta). Go figure!! Life's a Beach!!

[mftnchn]

It is a big adjustment especially when we feel so miserable. I spent many many hours reading this forum, and eventually things started falling into place. As has been said, simple meals at first will help.

Remember that with a diagnosis of celiac it means absorption issues. So often many of our symptoms have to do with deficiencies. Your doctor was very very remiss to not check your levels. Also celiacs are prone to other auto-immune problems and these should be checked as well.

However, take it a step at a time. Often people here just improve naturally when they eliminate gluten. So I think patience and wisdom are in order...

Start with obvious sources of gluten, then learn to check ingredients and recognize the hidden gluten sources on ingredient lists. Then take a look at kitchen items that you can't really clean well from gluten, and replace those. From there, check your personal care products, especially if you are still symptomatic.

Once you know you are not exposed to any gluten at all, (and it takes ongoing vigilence), then if you don't improve consider other food intolerances. People here can be really helpful with that.

After you are adjusted, then there are tons of recipes to experiment with and learn to cook substitutes for what you are really missing.

For me, because constipation was my main symptom, it was figuring out how to address that. Our bodies don't work well if we don't eliminate well.

Keep us up to date. Your daughter sounds sharp and motivated, maybe she can help you research and plan.

[BettyL.]

Hello,

I am a newbie- diagnosed on 9/11/07 but I have always had many heath problems (migraines, anemia, hiatal hernia and on and on). For me it has been a vomitting issue and chronic mirgraines until the list kept developing to the point of chest pain and constantly being tired yet unable to sleep or rest.

I left the GI's office on 9-11-07 with a little brochure with nothing else to follow up on he said just follow the diet and don't worry about the arm pain or the hiatal hernia if you just remove the gluten it will go away. Yeah- I came home and followed what ever was on that list but the list didn't say that cross contamination could make you sick nor did it say what is other forms of gluten-wheat. I continued to thow up and my husband said what did we do wrong we followed the list? Then I contacted Barnes and Knoble for books and the internet to be my own doctor (so to speak). I started the diet on Monday after a terrible spell of throwing up and crying for no real reason, the muscle aches and feeling of dizzy (stuff I had always thought to be "in my head").

It is to the point that I am so scared to eat at all (as it is I never really did have much of an appitite)-

It is also the emotional trama that goes with this (I never know when it will hit me nor what to do when it does) I get scared and my heart feels like it is actually going to jump right out and I will have to catch it.

I realize that it is going to take a long time to feel better as I have symptoms for as long as I can remember (childhood and I am now 38). They have recently sent me for more test because my blood pressure was very low and my heart beats irregular. In addition, the test is checking for cancers and to see if I had a heart attack that I man not be aware of.

I am sure that I am not the only one (duh) scared of even testing to see if something will make them ill but I am always scared to even have a bite of stuff on the safe list. I do eat a handful of stuff that I have not thrown up and if I keep it down I consider it a Yeah moment - I end up just drinking water all the time thats what I had been doing before the biopsy.

Sorry to make this long and if I repeated myself somewhere here it is my mind going in space. I just want to vent and hear about anyone else scared of eating and the physical and emotions you are dealing with as well - or what your doing to make it thru the day. Again- sorry (I am in a panic mode and angry as well) Plus-I have been reading all the stories and I want to listen to your venting or ideas or whatever it is you wish. I want to be there for someone (I am tired of having a pity party)! I am looking toward helping and learing more. Thanks for listening.

Hi,

You have my prayers; I understand what you are going through. I am presently on a feeding tube after my last surgery for a hiatal hernia. The third one in 6 years. My doctor feels that all the vomiting and body spams is the reason for the hernia. It is easy to make mistakes when you first start the diet; but it does become easier. I read the label of everything I buy and have decided not to eat out. Try rice, potatoes, chicken, eggs, fresh or can fruit. At times I couldn't eat and ended up in emergency at the hospital.

Betty L.

[Janeti]

Dear longislandlady,

I also am from long island. I was wondering because that you had so much damage, did they also do a colonoscopy? Sometimes I get intestinal cramping, but I know that they have a long way to heal. When I had the endo, I really should have had the other end as well. My GI really wasn't the smartest doc around. I have been gluten-free for 7 months, I sometimes get painful gas pains, that I feel in my shoulder blades(gallbladder taken out 12/06) and I wonder why that is still happening. I have a whole new way of pooping, and I think I really need the colonoscopy, and I am really scared. Do you still get cramping and gas pains? Janet

[MrsG]

Thanks to all of your replies! I cannot express how much I appreciate all the wonderful people on this forum.

I have more to write but the ataxia makes it difficult off and on. I have a funny to share.

Thanks for listening and all of your replies,

-Lucy (Mrs.G)