Jump to content
  • Sign Up

Archived

This topic is now archived and is closed to further replies.

newceliac

Newly Diagnosed And Could Use Some Help, Please!

Recommended Posts

I was diagnosed with celiac disease about 1 week ago. This post may be lengthy and I do apologize but I am feeling confused, frustrated and lonely. Here is just a "brief" synopsis of my medical history.

- I have been to a GI dr. multiple times for digestive problems. In the past few years, I have had a colonoscopy, CT scan, upper and lower GI series. I was always just told I had irritable bowel syndrome. One time, they did say I had an ulcer.

- I've had bone and joint pain for a few years. I wrote it off to the fact I had a hysterectomy and due to family history of breast cancer, I chose not to take hormone replacement. Gyn always said that an extremely low estrogen level could cause this. I was tested once for rheumatoid arthritis which was negative. I just figured I had fibromyalgia.

- Some days I am so tired and I don't even have the energy to carry clothes to the washing machine. I would have a dizzy feeling and feelings of a head rush.

- I have had heart palpitations for a little over a year. Went to my PCP and he stated it was from stress and prescribed antidepressant meds. which I only took for 1 month.

- In December, the lower back and hip pain increased. I pinched a nerve in my back so I went to an ortho dr. During the workup for the cause of back pain, he did an Xray and advised me that my bones were very light on the Xray and he thought I had osteoporosis. He ordered blood work, a 24 hr. urine calcium test and a bone density scan. The results showed I had a severe Vitamin D deficiency and osteoporosis. The ortho dr. said that wasn't normal at my age (46) and referred me to an endocrinologist.

- It took 5 months to get in with the endocrinologist. The endo dr. prescribed that I take 50,000 iu of prescription Vitamin D 2x week for 6 weeks. He said that Vitamin D deficiency could cause all of the above symptoms I had been having. Well, I started to feel worse after started these mega doses of Vitamin D but finished the course.

- A couple of months ago, my hair started falling out by handfuls. If I didn't have thick hair, I would be bald now. I went to the dermatologist and he told me to take biotin. He said that he didn't know what was causing it but it was probably just that point in my life that your hair thins!!!!

- My stomach problems intensified to the point I thought I probably had cancer. I had severe constipation, cramps, nausea. I would bloat like I was several months pregnant. I also had to pass gas constantly especially in the evening. I also have indigestion and nausea. I also have a burning pain about 1 in. up and 1 in over to he left of belly button.

- I scheduled an appt. with the GI dr. once again and I told him I was extremely worried that something was seriously wrong. He told me that it was IBS w/ constipation and prescribed meds. for that. He also said the burning pain was probably an ulcer. He pressed on my tummy and said everything felt fine. I think, as an afterthought, he said as he was leaving the room that he was ordering a test for celiac but he was fairly sure I didn't have that. Well, a few days later, his nurse called and said the blood antibody levels were positive for celiac and the dr. wanted to schedule a biopsy. The following week (which was last week), he did a biopsy. After the biopsy (which I was out of it due to meds), he came in and said the endoscopy confirmed celiac. My husband asked him did I need to see a dietician. His response was "no, she can get all she needs off the internet and I can give her the name of patient who can help out".

He said he would call with the biopsy results. He never called, so I called his office a couple of days ago to obtain the results. His nurse called and said the biopsy shows celiac. I asked her what I needed to do now and she said "go on the diet". She said I could get alot of info on the internet. When I questioned a little more, she didn't answer any of my questions. I have not personally spoken to the dr. since I was diagnosed. I told the nurse to please just mail my results.

- I was excited that I finally had a reason for all of the symptoms I have been having for several years. But now, I am more confused than ever. I have just been given a diagnosis that is a serious life long disease and I don't even warrant 10 minutes of the doctor's time. I don't know what to do and where to start. I have symptoms (other than digestive that I feel needs to be addressed). I also worry about other problems that may need to be checked out, etc.

- Basically, this is what my biopsy states. Small bowel mucosa displaying moderate to subtotal villous blunting with intraepithelial lymphocystosis and mononuclear cell expansion of the lamina propria, consistent with gluten sensitive enteropathy. Also, gastritis and duodenal erosion.

I started the diet about 1 week ago and I thought I was feeling better for a couple of days but the last few days I still feel like crap, digestive and otherwise. I still have nausea and cramping, etc. I am also still having the bad burning pain in mid area. I am trying hard to eat the right things but I just feel I have been left in the middle of the ocean with a boat with no motor or paddle.

Should I make an appt. with another GI dr. to get questions answered or see if other blood work needs to be checked for other problems due to celiac. How long is it normal to still feel bad? Sorry for the lengthy post but it feels good to get this off my chest and hopefully receive some guidance.

Thanks in advance

Share this post


Link to post
Share on other sites

I forgot to mention that I have read the book Celiac Disease: Hidden Epidemic by Dr. Green from front to back. I have also recently ordered Dangerous Grains, Gluten Free for Dummies, and a cookbook by Bette Hagman.

I have done extensive research on internet also.

Share this post


Link to post
Share on other sites

I was diagnosed with celiac disease about 1 week ago. This post may be lengthy and I do apologize but I am feeling confused, frustrated and lonely. Here is just a "brief" synopsis of my medical history.

- I have been to a GI dr. multiple times for digestive problems. In the past few years, I have had a colonoscopy, CT scan, upper and lower GI series. I was always just told I had irritable bowel syndrome. One time, they did say I had an ulcer.

- I've had bone and joint pain for a few years. I wrote it off to the fact I had a hysterectomy and due to family history of breast cancer, I chose not to take hormone replacement. Gyn always said that an extremely low estrogen level could cause this. I was tested once for rheumatoid arthritis which was negative. I just figured I had fibromyalgia.

- Some days I am so tired and I don't even have the energy to carry clothes to the washing machine. I would have a dizzy feeling and feelings of a head rush.

- I have had heart palpitations for a little over a year. Went to my PCP and he stated it was from stress and prescribed antidepressant meds. which I only took for 1 month.

- In December, the lower back and hip pain increased. I pinched a nerve in my back so I went to an ortho dr. During the workup for the cause of back pain, he did an Xray and advised me that my bones were very light on the Xray and he thought I had osteoporosis. He ordered blood work, a 24 hr. urine calcium test and a bone density scan. The results showed I had a severe Vitamin D deficiency and osteoporosis. The ortho dr. said that wasn't normal at my age (46) and referred me to an endocrinologist.

- It took 5 months to get in with the endocrinologist. The endo dr. prescribed that I take 50,000 iu of prescription Vitamin D 2x week for 6 weeks. He said that Vitamin D deficiency could cause all of the above symptoms I had been having. Well, I started to feel worse after started these mega doses of Vitamin D but finished the course.

- A couple of months ago, my hair started falling out by handfuls. If I didn't have thick hair, I would be bald now. I went to the dermatologist and he told me to take biotin. He said that he didn't know what was causing it but it was probably just that point in my life that your hair thins!!!!

- My stomach problems intensified to the point I thought I probably had cancer. I had severe constipation, cramps, nausea. I would bloat like I was several months pregnant. I also had to pass gas constantly especially in the evening. I also have indigestion and nausea. I also have a burning pain about 1 in. up and 1 in over to he left of belly button.

- I scheduled an appt. with the GI dr. once again and I told him I was extremely worried that something was seriously wrong. He told me that it was IBS w/ constipation and prescribed meds. for that. He also said the burning pain was probably an ulcer. He pressed on my tummy and said everything felt fine. I think, as an afterthought, he said as he was leaving the room that he was ordering a test for celiac but he was fairly sure I didn't have that. Well, a few days later, his nurse called and said the blood antibody levels were positive for celiac and the dr. wanted to schedule a biopsy. The following week (which was last week), he did a biopsy. After the biopsy (which I was out of it due to meds), he came in and said the endoscopy confirmed celiac. My husband asked him did I need to see a dietician. His response was "no, she can get all she needs off the internet and I can give her the name of patient who can help out".

He said he would call with the biopsy results. He never called, so I called his office a couple of days ago to obtain the results. His nurse called and said the biopsy shows celiac. I asked her what I needed to do now and she said "go on the diet". She said I could get alot of info on the internet. When I questioned a little more, she didn't answer any of my questions. I have not personally spoken to the dr. since I was diagnosed. I told the nurse to please just mail my results.

- I was excited that I finally had a reason for all of the symptoms I have been having for several years. But now, I am more confused than ever. I have just been given a diagnosis that is a serious life long disease and I don't even warrant 10 minutes of the doctor's time. I don't know what to do and where to start. I have symptoms (other than digestive that I feel needs to be addressed). I also worry about other problems that may need to be checked out, etc.

- Basically, this is what my biopsy states. Small bowel mucosa displaying moderate to subtotal villous blunting with intraepithelial lymphocystosis and mononuclear cell expansion of the lamina propria, consistent with gluten sensitive enteropathy. Also, gastritis and duodenal erosion.

I started the diet about 1 week ago and I thought I was feeling better for a couple of days but the last few days I still feel like crap, digestive and otherwise. I still have nausea and cramping, etc. I am also still having the bad burning pain in mid area. I am trying hard to eat the right things but I just feel I have been left in the middle of the ocean with a boat with no motor or paddle.

Should I make an appt. with another GI dr. to get questions answered or see if other blood work needs to be checked for other problems due to celiac. How long is it normal to still feel bad? Sorry for the lengthy post but it feels good to get this off my chest and hopefully receive some guidance.

Thanks in advance

wow, that's a lot. the disease has probably either gotten really far with you...or you have some other major problem. i suggest going on the diet to the extremes. that's what i did. limit your eating to hamburger patties, vegetables and other simple stuff. try also getting rid of milk, soy, and egg in your diet also. check EVERYTHING in the stuff you eat. make sure you know how you're meat is proccessed. call companys and make sure the stuff is not processed on the same line as items with wheat ect.

it is normal to feel like crap for a couple of weeks even months. sometimes, if you eat something off the diet, you won't get the effects of it until weeks later. especially if you eat a lot of wheat and stuff for ages and then it carry's on and on and on....

i hope you feel better soon!

feel free to PM me any time!

.::STARGIRL::.

Share this post


Link to post
Share on other sites

"My husband asked him did I need to see a dietician. His response was "no, she can get all she needs off the internet and I can give her the name of patient who can help out". "

That is so sadly typical.

If you've already been reading books and doing extensive internet research, then it's not terribly likely that another GI doc will be able to educate you better-- as far as Celiac goes, and what you need to do and not do.

Stargirl gave good advice when she said to stick to simple things. Whole foods (meat, vegetables, fruits, etc) are probably going to be best for your body, to start out with.

And, like she said, you really have to check *everything* that goes in your mouth, including- toothpaste, vitamins, meds, mints, gum, lipstick, etc. Some other surprising places gluten can hide-- rice mixes, salad dressings and marinades, ketchup, syrup, chips, soups, sandwich/deli meat. Nearly every food that has been processed is suspect, so you have to check *everything*.

Then there are cross contamination issues. If you've been reading on the subject, you probably already know that less than a bread crumb can cause a reaction. Gluten hides on countertops, in microwaves, toasters, tables, stoves, desks, keyboards etc. at home, at work, in restaurants, and your friends' and families' homes. If a gluten-free potato chip is made on a production line that previously made a gluteny chip, that gluten-free chip will cause a reaction in some people (even though the equipment was cleaned between recipes.) gluten-free french fries cooked in oil that was also used to cook breaded chicken will cause a reaction in most people. It sounds impossible, but it happens everyday.

As far as getting more testing done regarding your various symptoms, I couldn't advise. I've learned that darn near anything can be a symptom of (be caused by) Celiac Disease. Any of them could also be due to something else entirely. Two ways to find out. 1) get more tests done. Or 2) Give the gluten-free diet more time. It does take time for the body to heal, and it takes different amounts of time for everyone.

This is a great place to learn; I hope you stick around!

-Sarah

Share this post


Link to post
Share on other sites

Hi and welcome, you belong here, and you will be able to get lots of information from everyone here.

Your journey is very similar in the symptoms, and health issues of all of us. We all have few things in common especially gluten. You are going to find answers to your questions from people who understand what you are going thru every step of the way.

In my experience the symptoms are almost gone. I have the strength, energy, to do my daily work, but I've have been in the diet for almost six months. Life will get beter, you have take it one day at a time. Gluten toxicity is not easy to get out of your system especially if you have been suffering from it for a long time. Have lots and lots patience. At the beginning you feel like one day is great then two days later you feel you are going backward. Give your body time to heal, and you will see that all your symptoms will disapear. For me even my lower back pain is gone.

Take each day at a time, and please feel free to write, ask questions, We all know how difficult it is to begin a life long journey in this diet.

My prayers are with you.

Take care and keep us informed of your progress.

We can laugh and cry together.

Best regards to you. ;)

Share this post


Link to post
Share on other sites

Definitely get off of dairy for awhile. Lots of Celiacs have problems with dairy until their gut heals. The area that is damaged is the same place that processes lactose. You can try adding it back in after you have healed up a bit.

Is your whole household going gluten-free or just you? If it's just you, you need your own toaster, cutting board, pasta strainer, butter dish, jar of peanut butter, jar of mayo, etc . . . all to avoid the gluten crumbs in your house.

Like everyone else has said . . . eat simple for awhile.

You found a great resource when you came to this site.

Hope you feel better soon.

Share this post


Link to post
Share on other sites
Guest kivmom3

I went to one GI doctor who diagnosed me via blood work and then he gave me a bunch of websites to go look up the disease and told me "good luck". He did say he was always available for questions and yet never called me back when i had the questions. I did research and found a doctor educated in celiac disease. What a difference!!!

I think,if you want, you should go seek a GI doctor who is more educated on celiac. He would be able to address most of your concerns and questions.

As for eating, I would eat very simple for a while. Eat fresh veggies, fruit and unseasoned meats. I would eliminate dairy since most celiacs seem to have a problem with it the first few months and then reintroduce it after maybe 3 months on the diet.

It does take a while to feel better. It can take 3-6 months or even up to one year but you won't feel nearly as bad as you did prior to getting diagnosed. Every day you should feel a little bit better. It took me almost 2 1/2 months to start to feel some improvement and even now I still have ups and downs.

Take it day by day and you will start to feel better :)

Gg

Share this post


Link to post
Share on other sites

I've had the same symptoms and diagnosis-today I learned it wasn't my gallbladder but Celiac disease-I got excited because now there's a chance to live a day without pain or dizziness or sleeplessness followed by days of sleep. The hardest thing for me today was going to the grocery store and trying not to cry in public while trying to search for anything gluten-free.I found a section of three shelves and nothing looked enticing. I got the sticker shock of my life at the checkout counter. I also acquired lactose intolerance from Celiac and let's just say grocery shopping was a nightmare. Instead of leaving with a cart full I left with half a basket empty! All the usual symptoms I've had and have lost alot of weight (wish it was due to exercise). I haven't gotten my hair cut in 7 years and whats left is just finally below my shoulders. I miscarried twins (after being told I couldn't have children) due to being severly malnourished and not knowing it. ( I never thought while taking prenatals and pigging out could get you still at a malnourished point!) I was diagnosed with you name it and the cures never worked although I did find a way to help the bloating, gas, stomach cramps and lactose intolerance go away somewhat....before I was diagnosed I tried curing myself of symptoms by any means. I went to Target and purchased Lactaid pills and "Irritable Bowel Syndrome" Pills. It made eating alot less painful! Anyone else have any luck with these? I have 3 others in my house and don't know where to start as far as cleaning things from their food or just buying my own cookware completely. It's good to know how to get better but where the heck do I start?

Ithought the "Aitkins" diet sounded bad but now I'm going to live it times 10!

Got to admit though, I bought some pretzels and cookies today that were Gluten-free and they were actually really good!

Need advice................at a loss...........................................help..............arghhhhh!

Share this post


Link to post
Share on other sites

Welcome to the board both of you!

The beginning is really hard! It's normal for symptoms to come and go in the beginning. For one, you should realize that even after you have cut gluten out of your diet, the immune response takes time to die down, so you can still be having a reaction to gluten three weeks or so after eating it.

Shopping is hard at first but you'll find that a lot of ordinary mainstream products are actually gluten free. You need to learn to read labels, and that is time-consuming in the beginning, but after a while you will build a shopping list of safe brands and products and shopping gets easier again.

The easiest in the beginning is to buy plain meats and fish, eggs, vegetables, fruit, rice. Basically things that don't come in a box and that don't have all kinds of stuff added to them.

If you have a hard time digesting you food right now it's a good idea to cook veggies soft, maybe even cook your fruit. But you'll see how it goes. And dairy can be hard to digest in the beginning, so if you feel like you're not getting better, maybe cut it out for a while.

Making a major life change like this goes in stages, you'll go through denial, and anger, and sadness, and all kinds of emotions before you get to the point where it's become a part of your life. Don't forget you can always come here and vent if you need to! That's what this board is for, to support each other!

Pauliina

Share this post


Link to post
Share on other sites

Hang in there, I spent many hours daily for the first three months combing this and other sites. I actually got worse after going Gluten-free Casein-free, but also with some occasional bright spots of positive indications. I am going on 5 months now, and still have ups and downs, but now have some periods where I am quite good for a week or more between down sides.

I have also identified soy intolerance along the way, by doing a diet elimination when I didn't really improve after 3 months. Also my lyme disease recurred after going gluten-free, not sure why but I bet there is a relationship in some way.

Patience, persistence, and time and experimentation will pay off. Search this site for your questions, too.

Share this post


Link to post
Share on other sites

I'm on my sixth day of the diet and I feel better than I have in months. Here's my story:

I started having terrible diarrhea in middle school, around age 12. I was sent home sick from school nearly every day for months on end. Our pediatrician was useless (he was revered by my mom's family because he saved my preemie uncle's life 30 years earlier, so getting a second opinion was considered heresy). Finally, that doctor retired and I started seeing a new doctor. I have been through several doctors since then; when I asked each about celiac they always dismissed it. Finally, one of them explained to me why I absolutely could not have celiac, "You're overweight. If you had celiac, you'd be wasting away."

When I was 24, my grandfather was diagnosed as celiac, but still the doctors said that that didn't mean anything. A few years ago, I did Atkins and my digestion seemed to improve while I was on that diet, but still they dismissed it. I would go through periods of time where it was tolerable, and I would sometimes have terrible episodes where I was in bed (and on the toilet) for a week or more. This summer, it has been just awful, and a week ago Monday I ended up in the ER, followed by yet another useless visit to the apathetic GI doc.

On Monday, I found out that my aunt was diagnosed as celiac a few months ago, and the digestive problems that she has had for many years are clearing up now that she's on the diet. I have not had any gluten since I found that out.

On Tuesday, I got the book Celiac Disease: Hidden Epidemic by Dr. Green and read it front to back.

On Wednesday, my husband and I went through the kitchen top to bottom removing the foods with gluten. I had printouts from the Celiac.com website with me to check the ingredients that we were unsure about. I went to the grocery store, and picked up some items recommended by my aunt.

Thursday night, we made spaghetti with "rice sticks" - it was fabulous.

On Friday, I went to the health foods store near where I work and discovered that they are very well-versed on the gluten-free diet, with about 1/10 of the store devoted to gluten-free items.

When I first read about celiac twenty years ago, the diet sounded horrible, and it was a relief when the doctors told me that I didn't have it. Doing research this last week, I've found so many great resources in libraries and online (books, articles, websites, blogs) that it doesn't seem nearly as daunting. For the first time in a long time, I'm feeling very hopeful about my health.

HouseKat

Share this post


Link to post
Share on other sites

NewCeliac, I was in the place you are in to a great extent until two years ago. When I first started the gluten-free diet, I was unable to tolerate anything raw for six months. Raw fruits or veggies (including salad) would give me terrible stomach cramps and diarrhea, I had to cook everything. I also couldn't handle any regular vitamins or other supplements at all.

The best thing to take to improve your vitamin D is cod liver oil. The Carlson brand is fabulous and doesn't taste bad at all. I was able to handle that, and it brought my vitamin D up to optimal levels (around 120) within a year of taking it (I took two tablespoons a day). Getting the omega 3 fatty acids you need will help, too.

You may want to take a sublingual vitamin B12, because it won't need to be digested, either. If your ferritin is bad, you may need injections for now. There is no way your digestive system can handle iron pills right now. When I was where you are, iron pills would make me double over with stomach cramps.

You might have to wait to take other vitamins until your digestive system can handle them. Until then they won't be absorbed anyway, and will be a waste of money, besides making you feel worse.

Eliminating dairy and soy is excellent advice. With everything else you'll need to be vigilant and try to figure out what might be causing problems. If you don't start improving soon, you may have to do an elimination diet.

You know, your doctor isn't interested in helping you with the diet, because it won't make him any money! Doctors like to prescribe pills and know precious little about nutrition. It isn't really their fault, as medical schools are controlled by the drug companies (who actually send people to teach classes on what to prescribe when). And since those drug companies lose money when somebody is diagnosed with something that can be controlled by diet alone (no more pills for IBS, depression, stomach pains etc.), they certainly won't teach much on celiac disease, and nutrition is obviously very unimportant to them.

Share this post


Link to post
Share on other sites

I am 2 weeks into this new diet and I have to admit that it is not really that hard, I thougth that here is my chance to get away from the junk food and get healthy, however I have found the gluten free jusnk foods and I am eating those...yes there are alot of things that you can still eat. I am a super picky eater, I thought what the heck am I going to eat, but researching on the internet is the best place to find out what you can and cant have, especially this forum. Grocery stores are becoming more aware of Gluten intolerances and are starting to carry alot more Gluten Free foods....I have bought muffin and pancake mixes that are gluten free and they are really good, the muffins are better than my recipe that I have always used. Vans Wheat free waffles (exactly the same as Eggo Waffles) are amazing...especially the blueberry ones. Rice crisps are gluten free and they are just like crackers and come in a variety of flavours.

I would go dairy free also, that has been harder for me then gluten-free, but I have done good. I dont get sick to often...a few times a year so I dont know if I am healing or not...but no bloating so it must be working, start easy...fresh foods. I have not really changed alot as I was already eating no gluten and I just change the way I amke my foods. My house is not gluten free, I have my own stuff in my own pantry and I clean and be careful. This morning I made pancakes for my family...gluten-free for me and regular for the rest. My kids are shwoing signs of Celiac but are super young so I am going to ge them tested and slowly decrease the Gluten....

I know that it is overwhelming....I am there. It sucks to think that we can never eat the things we love again, but the way I see it you can eat whatever everyone else is eating, it just has to be prepared a different way.

Oh and another tip...be careful of your shampoo and conditioners. I was using Herbal Essience and my head was super itchy and I switched to Dove (which is gluten free) and noticed a difference.

Good luck.

Share this post


Link to post
Share on other sites

First, Welcome!

This is the only website that actually got me somewhere with Celiac disease! I didn't know what was wrong, after every test and tons of doctors, I was finally so anemic I missed 7 weeks of school and then even after the Iron IV treatments, the iron went right through me! The hematologist told me I was going to need another set about a month after the treatments!!! Outrage!! So my grandmother told me that her stomach problems went away when she took gluten out of her diet (she wasn't really gluten free...just started eating rice cakes instead of bread lol). Then I went to her dr. who suggested the gluten-free diet and he is AMAZING! He has helped me so much! He suggested that I try the gluten-free diet and WOW I felt way better in a short amount of time. He told me to research Celiac Disease and I came upon this site and it was amazing how supportive people were and still are. Do you have the forbidden list from this site? It is the only thing that helped me survive. Also, my allergist suggest I go tree nut and soy free and that helped a lot! I had already been peanut and dairy free. I have had a dairy problem my whole life and just was always in denial, but after all it's only food!!!

My suggestion, download the forbidden list and take it with you grocery shopping, it's a lifesaver. Also, if you have a product in question, check websites of the companies because a good majority of them will talk about their gluten policy. (Trader Joe's won't hide gluten in spice or natural flavors, Kraft is the same, etc.) Finally, I would make sure you get your own pots and pans (don't need a ton) and a cutting board, toaster over, and strainer. Again, good luck and I hope you feel better soon!

Kassandra

Share this post


Link to post
Share on other sites

Dear new celiac folks,

I was diagnosed in 2002. I felt substantially better in a few months, and it was amazing the number of things that had improved in a year--I hadn't realized my acne was mostly caused by the celiac, for instance. And it was wonderful to leave the house again without having to visit every public restroom in town.

I would strongly recommend that you see a naturopath. (My insurance does not pay for naturopaths, but it is worth it.) They know much more about nutrition than regular doctors. Mine has been a huge help with depression (celiac can make it worse), osteoporosis, and a lot of side food intolerances. I take a lot of supplements, and I take digestive enzymes. At least see a dietician. Some of the new organic/nutritious food stores employ dieticians who will consult with you for free. Be sure to get a baseline bone scan for osteoporosis, even if you think you are too young for it. All those years of not absorbing nutrients can cause problems.

There's a lot of good food out there. It just takes a while to find it and get it down to a routine. I hope you feel better soon!

Share this post


Link to post
Share on other sites

All,

I appreciate your responses. It helps to get info from people who understand.

I am still so frustrated because I feel like I am eating the right things and I still am having digestive issues. Yesterday, I fixed a salad for lunch (thinking that was really good for me). Within 30 minutes of finishing the salad, I had cramps and was in the bathroom off and on most of the afternoon. I woke up this morning and my stomach stills feels like menstrual cramps (which I am memopausal), gas and my bones and joints hurt.;

I guess I want instant relief and I just need to give it time. I read posts on here though that people start feeling better almost immediately and I am not feeling that instant relief. It has been about 1 1/2 weeks.

I also had gastritis and duodenal erosion, per endoscopy (when biopsy was done). Could this have anything do with the continued digestive problems. The dr. did not prescribe anything for these problems. I guess he figures they will clear up on their own.

Of course, as stated in my initial post, the dr. hasn't bothered to help in any way since the diagnosis.

Thanks for listening.

Share this post


Link to post
Share on other sites

I've been diagnosed for just under 4 months now, and the more I read of everyone else's experiences, the luckier I feel. My dermatologist is the one who actually diagnosed me, through my DH. (though I do have an internist, who removed my gallbladder a few years ago) I'm only 22, so my body bounced back fairly quickly. My emotions took longer -I almost a month before I could walk into a grocery store and look around without crying. Also, I found that I was craving dairy like nothing else - I still go through a gallon of milk a week, all by myself. I also have stress-induced acid reflux, and the only thing that helps when it strikes is the Stoneyfield Farms yoghurt, so you might try that and see how you do. SF Farms has 6 live, active cultures, and I honestly think that really helped me bounce back quicker.

If you can, you should probably also try to find another doctor. Like I said, it was my dermatologist who diagnosed me, and I am now on a first name basis with his receptionist. The dr. even called my cell phone when the NY Times ran an article on Celiac disease, so he could get my email address to send it to me, and his staff keeps their eyes peeled for gluten-free recipes and sends them to me. Having a doctor who cares and is available to help you can make a huge difference.

Another, more emotional solution comes in the form of a book. It's called "The Secret" by Rhonda Byrne, and it's changed my entire outlook on my life. The depression I had when I was first diagnosed - let's just say I didn't move from in front of the TV for over a week. But one of my co-workers recommended this book, and I read it, and it's had a HUGE impact on my life.

Good luck! <big hug>

Share this post


Link to post
Share on other sites

NewCeliac, all of your symptoms are familiar to me, although I think many of yours are more progressed. I know symptoms can vary, but I have had the achey joints, the sleeplessness followed by days on end that I can't get myself out of bed, gas that's pronounced in the evening (just in time for social events!)... hang in there, you will feel better soon!

I initially tried the gluten-free diet on my own on a friend's advice, and within one week I felt like I'd been reborn. Suddenly I was waking up an hour before my alarm, wanting to do extra workouts before work, and getting home at night with energy to actually clean my apartment (!) AND go out to dinner. I went back on gluten for a few days for blood testing, which was confusingly negative despite severe GI reactions, and since then it has been much longer for me to get that super-healed feeling back again. After 2 months I think I'm finally back on the road to a clear stomach and good energy. I think it's a combination of the amount of long term damage you are dealing with and stumbling blocks of mystery ingredients that are so hard to eliminate. Who knows why it takes longer sometimes, but eventually you'll feel normal.

My GP was also fairly flippant about my diagnosis - he sent me my blood test results by snail mail, with a letter saying that he was still diagnosing me with celiac and I should continue the diet. That's a tall order to send someone by mail! I made another appointment with him to discuss whether there might be more testing or a referral he could give me, and when he saw that this was not an easy diagnosis for me he was much more focused. I think that doctors have heard of this but just don't realize the kind of life sentence that is involved (after all, they deal with much more life-threatening diagnoses all the time - this diagnosis is like finding a cure in their eyes!). When I came back in, he spent time with me to discuss my other blood results and vitamin deficiencies, and gave me a GI doctor referral. Now I just have to decide whether it's worth going back to gluten for a biopsy, but that's another story.

So anyway... you're not alone. I actually felt reassured just to read the other posts responding to you here! Like any site you should take advice with a grain of salt, but in general there are some really kind, knowledgable, and helpful people who contribute here and you will find similar people in the real world, too. (Look into local celiac societies...) Good luck!

Share this post


Link to post
Share on other sites

I'm on day 2 of the celiac diet and I feel just awful! my muscles ache, my headaches, the tiredness is making me mad and I'm super dizzy! I have been online since coming home from the dr's and finding lots of great info but I still feel lost and in shock. I've been taking the bull by the horns about it but today i collapsed. I just dont know what to reach for?? information overload I think. My biopsy isn't even scheduled yet and I'm reading that u have 2 be taking the gluten at the time of the biopsy. So why am i even starting the lifestyle?? Most of the 'what to eat' sites are from the U.S. and I'm from Canada. Am I the only celiac in Canada?? Dumb-ass comment sorry!

I dont see a dietician until halloween...thats so far away so this laptop is my only hope. I did a shop yesterday and was exhausted from reading all the labels. I did by a small notebook to keep all my celiac info in from printouts etc. I've been taking 300mg of iron daily for the last week since my iron levels were grossly low. hmmm been like that for yrs and the dr said chalk it up to having 3 little ones. He placed me on zoloft for the energy boost. My diarrhea has been out of control for the last year but I didn't have time to worry about me. My dad just died in April of cancer and now I'm terrified that i might have intestinal cancer. you never know right? I'm wondering How long have I had this ??? I should have been diagnosed alot sooner than this and thats upsetting. my constant tiredness, my drrhea, my irritability, my cramps right after I eat a big bowl of vector w/ raspberries. This was my breakfast everyday for the last year. I thought it was just because my tummy didn't like food in the morning. I chalked all of this up to stress from my dad's illness for the 13 months from diagnosis till his death, now it's the grieving process and all that entails.

can someone tell me what they eat in a day please?? I'm missing my toast, and porridge and cookies. I just need some help please and thank-u. sorry this was long, but I think I'm at the right place to spill the feelings. Is there a colony somewhere in this world where we all (celiacs) live together?? I know another dumb-ass comment.

Share this post


Link to post
Share on other sites

Glutenfreechick, don't go gluten free yet!!! You need to keep eating it until your biopsy!

In the meantime, just keep eating what you always have, and use the time before your biopsy to slowly research the gluten free diet, so that after your biopsy you can go on the diet immediately. Take the opportunity to eat all your gluteny favourites one more time...

Pauliina

Share this post


Link to post
Share on other sites

I figured it out for myself about 4 months ago. Been sick with stomach issues most of my life, though I thought lifestyle was the primary cause; cleaned up my act, ate better, quit smoking and most of caffeine even...but everything kept progressively getting worse until I found myself in an emergency room, bugged out over an attack that felt like one third flu, one third anxiety, one third food poisoning. I gave up waiting for a doctor after the third hour passed and figured, as usual, I'd sort it out on my own. Did a lot of online research, decided to give the gluten free diet a shot and found over half my symptoms gone within a month. Joint pain is gone, constant sensation of having food stuck in my throat is gone, the foul smelling gas is gone, the diarrhea is gone, the frequency of the knife in the gut pain is down and the anxiety is down as well. I'm still hardly G.I. healthy, and I'm still working through the dietary changes...especially since I've been athletic despite my health problems and supplements either have gluten or dairy in them...but it's been a complete about face on the symptom side, almost immediately. I'm 27, male, and my family has history of "mysterious" issues that docs can't sort out - looking at the wide variety of symptoms celiac can cause, I'm inclined to believe all those illnesses are really celiac complications.

Can't say it's not depressing as all Hell, though, despite feeling better. I found I can't have corn or potatoes, although neither has the symptoms of an allergy...it's more like they cause a whole lot of gas pressure when I eat them. I have no problems with corn meal. But I'm stuck without potato chips of any kind, no tortilla chips, no fried or fresh potatoes, no fresh or canned corn, I've been incapable of having dairy since I was 18, plus all the gluten products on the no-no list has made eating a challenge. Not to mention beer! Man I miss beer. Also made it so travel is intimidating, never knowing if one of those wicked attacks are lurking around the corner.

Anyways, good to have a resource to poke through. I'll be floatin around here for a while I'm sure, asking questions and soaking up everyone's experience.

Share this post


Link to post
Share on other sites

What do you eat in a day? I'm like Gryph and I can't have dairy, corn or potatoes, but perhaps you can? I eat rice toast for breakfast. Rice bread makes bad sandwiches but good toast. I eat a lot of fruit, soy yogurt, rice crackers, peanut butter, hummus (I make my own and freeze it.) protein drinks (I make my own from rice protein) or nuts for lunch. Dinner is the easiest as long as you eat at home. I eat meat, rice pasta (really very good), vegetables, beans (not a problem now), home made soups, scrambled eggs. Plain food is pretty easy--figuring out sauces takes a while with no dairy. If you are tired of all this cooking Amy's brand has a few frozen foods celiacs can eat--even pizza.

The important thing is figuring out where to shop. It is not easy and I have to go to several different stores to get what I need. Do you have Whole Foods or Trader Joe's (best rice bread and good price) near you? They have a lot of alternative foods. You can also order from www.bobsredmill.com. The company is in Oregon, and they have great gluten-free products. They have good bread mixes (one rising and no kneading) and wonderful brownies. Talk to store managers and they'll show you what they have. Even the standard big chain groceries are starting to have gluten-free foods. If you aren't sure of a product those 1-800 numbers on the labels really do work.

My friends have been amazing. They tell me about restaurants, clip articles, buy me cookbooks, and show me new foods they think I can eat. My students threw me an end of year gluten-free party. This diet is a pain, but it gives you a chance to see how kind people can be.

PS to Gryph--I can tolerate sweet potatoes, and they are good baked with soy yogurt and margarine.

Share this post


Link to post
Share on other sites
What do you eat in a day? I'm like Gryph and I can't have dairy, corn or potatoes, but perhaps you can?

......

PS to Gryph--I can tolerate sweet potatoes, and they are good baked with soy yogurt and margarine.

Good to know I'm not the only one; wasn't sure if it was something else and I was mis-associating the corn and potato thing.

I'll start buying some sweet potatoes then, see if I can eat those. I used to make a middle eastern mashed sweet potato using a ras el hanout spice blend...have to see about doing that again.

Share this post


Link to post
Share on other sites

×
×
  • Create New...