Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Diagnosed And Very Upset Now
0

17 posts in this topic

Hi everyone, it's been a really bad day today, it's just sinking in now.

Yesterday I got the news from my doctor that my blood test came back positive for coeliac disease. I've been suffering from pains and bloating in my stomach for about 4 years now. My symptoms now are manifesting as a stinging sensation on the wall of my stomach. I'm 28 years old, from the UK and I'm totally devastated by this. All the foods I love to eat I am no longer able too. I really don't think I can cope with the type of diet I am being told to follow.

My GP told me that the results of my test were rather odd however. She said normally they would expect to see other things in my blood, but she said everything else came back completely normal (I was not anaemic either which she also said was rather odd). Is there a possibility of a false positive diagnosis here? I'm going to hospital soon for further tests but I feel so depressed now, I just can't imagine having to eat this way for the rest of my life. I also read that my chances of developing intestinal cancer and lymph nodes cancer are increased now.

I'm so miserable, yet at the same time I'm holding out hope that because the doc said my results were odd, I may not be coeliac and instead may just have a sensitivity to gluten. Is this possible? I'm also worried about money because here in rip off Britain, the prices of these gluten free foods is just ridiculous.

Any advice or words much appreciated.

0

Share this post


Link to post
Share on other sites


Ads by Google:

To begin...yes, false positives are possible. But please do not hold onto that too tightly. It sounds like it's highly likely that you will need a gluten-free diet. Especially since your symptoms DO sound like typical celiac disease. It would really be that strange for the rest of your blood results to be normal if they caught your celiac before it managed to do that much damage (and really, if you do not follow the diet you need, you could do yourself a LOT of damage).

I know it's hard when you have just been diagnosed, but I promise you, as will everyone else, that it does get easier. You will find some substitutes for things you love (they do exist and some are better than you imagine) and you will learn to appreciate even more the things that you can eat.

Even if what you have is not celiac disease and is a case of gluten sensitivity, you will still need to go on a gluten-free diet.

0

Share this post


Link to post
Share on other sites

There is definitely the shock of being diagnosed as Celiac, but eating Gluten Free does become easier with time. My teen is Celiac and we've all gone gluten free for her. It can be a drag at times, but when you see how much better you feel you'll find it easier to be gluten free. Gluten Free foods in the US are a rip off as well. There are still many foods you can eat. All meats, vegetables, fruits and rice are generally safe. Its amazing what you are capable of when you have to. We've been doing this for 6 weeks now, and its easier now than when we first started.

Celiacs come in all shapes and sizes, present with differing symptoms and diagnosed in a variety of ways.

The one positive to Celiac unlike many other diseases is that you don't take medications that can be quite costly, have terrible side effects from the drugs, or just plain stop working.

As with any major life changing event, change is hard, but it always gets easier with time. You may find new foods you love and you will feel so much better.

0

Share this post


Link to post
Share on other sites

False negatives on the testing are common, false positives are rare. You are lucky you have not developed any nutrient deficiencies as a result of the disease. Try to think positively about it. You have caught it before it does other damage to your body and gives you other autoimmune diseases that you cannot cure with diet. Yes, you will have to change the way you eat, and along the way with experimentation you may well come across some ghastly "gluten free" food, but on the whole today the gluten-free substitutes for things like bread and pasta are so much better than they were even 3 years ago when I started. AND, most food is naturally gluten free. It is only the food that comes in "boxes" that is gluten containing in a sneaky way. So if you start off eating meat, fruits, veggies, rice, pasta, nuts, seeds your life will be much easier. And then you can get to know all the other products (whether gluten-containing or not, whether your like them or not) little by little and it will not be so overwhelming (or so expensive.) :D

Just a word of caution - it matters not whether you are celiac or non-celiac gluten intolerant, you have to be just as careful about what you eat. :(

1

Share this post


Link to post
Share on other sites

I can totally understand! I was officially diagnosed last week and I am absolutely devastated. The bloodwork was positive but I was still holding out hope. However, the surgeon said the biopsies definitively show celiac disease. (Requested bloodwork as a sister found she was gluten intolerant.) My GP was shocked, too, as I did not present with anything. It is difficult for me to go off gluten as I have no GI symptoms (or headaches, rashes, etc.) whatsoever so there is very little incentive. My iron is perfect and I am not deficient in anything else. I have high energy, too. Anyway, I am sort of walking around the house in a daze. I teach culinary classes and cater - food is my passion. When I was on my gluten challenge I actually felt BETTER eating gluten and desperately dreaded going off!!

On a positive note, I have already been asked to teach gluten-free cooking classes in our city as no one else is doing that or is qualified. So, I know in the long run it will work out but for now I am still grieving. I think for me travel to other countries will be the most difficult - many countries we go to unfortunately have much to learn about the disease.

Thankfully my husband is incredibly supportive and I know I am not going through this alone. I do realize this is what I must do for my future health but am currently in the grieving process...

0

Share this post


Link to post
Share on other sites




Thanks for the replies guys, still wish I felt better about this situation though. Sorry to hear the news for you too love2travel. It must be even harder since you teach cooking! :(

there is just so much that I love that I can't eat now - I used to love going to TGI friday's, frankie n bennies and nandos. This is all out the window now! I can't eat the cookies I like, donuts, burgers in buns (big macs, yes I know it's bad but I LOVE big macs) I can't even eat cheese and onion crisps! I love my food, it was the one thing I was always glad I never had a problem with. My sister is diabetic, my brother suffers from asthma, I always felt so lucky because aside from acne, I never had any kind of condition and I could more or less eat whatever I wanted. I just feel sick thinking about it. I've been gluten free for a few days now and my wee smells really strange now too and it stung when I peed this morning, is this normal?

0

Share this post


Link to post
Share on other sites

People do go through wheat withdrawal sometimes when they first go off gluten, but you might want to see a doctor to make sure you don't have a UTI, those can get worse and be really painful, not to mention it's dangerous not to treat them. My withdrawal symptom was panic attacks, it took me about a week to start to feel better after I stopped eating wheat.

By the way, there are a lot of great recipes on this site, there are mixes sold at natural foods stores as well as large grocery chains (I am in love with the gluten free Betty Crocker chocolate chip cookie mix--it's about as close as I've gotten to a normal cookie! And widely available, yay!) I've seen gluten free donuts and muffins in the frozen foods sections of some stores, though I've never tried them myself. Van's gluten free waffles are good, so is Udi's bread. There are also some pizza places that have started offering gluten free pizza. The beginning is hard, and can be discouraging, but it does get better. It starts out with all the things you can't have, but the more things you find that you can have, the easier it is. Wheat is much less appealing to me now that I know it is something that makes me sick.

0

Share this post


Link to post
Share on other sites

Something to keep in mind: our bodies often become addicted to foods we are intolerant/allergic to. I never thought I could live without spaghetti or bread... but I don't even think about those things now. It will get easier as your body lets go of the addiction, I promise!

1

Share this post


Link to post
Share on other sites

Thanks for the replies guys, still wish I felt better about this situation though. Sorry to hear the news for you too love2travel. It must be even harder since you teach cooking! :(

there is just so much that I love that I can't eat now - I used to love going to TGI friday's, frankie n bennies and nandos. This is all out the window now! I can't eat the cookies I like, donuts, burgers in buns (big macs, yes I know it's bad but I LOVE big macs) I can't even eat cheese and onion crisps! I love my food, it was the one thing I was always glad I never had a problem with. My sister is diabetic, my brother suffers from asthma, I always felt so lucky because aside from acne, I never had any kind of condition and I could more or less eat whatever I wanted. I just feel sick thinking about it. I've been gluten free for a few days now and my wee smells really strange now too and it stung when I peed this morning, is this normal?

Your siblings should be tested, there can be a relationship between type one diabetes and celiac; and asthma and celiac....besides all 1' degree relatives should be tested anyway.

0

Share this post


Link to post
Share on other sites

Ardz, I wanted to comment on your testing first. I was diagnosed via biopsy but my bloodwork was negative. I feel fortunate that my body had, perhaps, less damage than it could have if my diagnosis had been delayed.

And eating gluten-free is not really more expensive if you save the gluten-free treats for special events instead of every day. Rice, potatoes, corn, meat, veggies, fish, fruit are all gluten-free. Throw in some gluten-free pasta and some homemade cookies as treats and its not that expensive. I saw that youre in England. I make a great gluten-free Yorkshire Pudding for Christmas. Youll find a way to make your favorites.

Something to keep in mind: our bodies often become addicted to foods we are intolerant/allergic to. I never thought I could live without spaghetti or bread... but I don't even think about those things now. It will get easier as your body lets go of the addiction, I promise!

I was so addicted to bread, pasta, pizza, cookies. I agree that it will get easier.

Your siblings should be tested, there can be a relationship between type one diabetes and celiac; and asthma and celiac....besides all 1' degree relatives should be tested anyway.

Yes, please make sure that your siblings and parents get tested. Who knows, misery loves company. At least then youd be able to swap recipes and tips.

Oh, and if you go gluten-free then your risk for lymphoma and cancer go back to normal within 3-5 years. So the sooner you go gluten-free, the less your risk.

Good luck to you and welcome!

0

Share this post


Link to post
Share on other sites

Thanks for the replies guys, still wish I felt better about this situation though. Sorry to hear the news for you too love2travel. It must be even harder since you teach cooking! :(

there is just so much that I love that I can't eat now - I used to love going to TGI friday's, frankie n bennies and nandos. This is all out the window now! I can't eat the cookies I like, donuts, burgers in buns (big macs, yes I know it's bad but I LOVE big macs) I can't even eat cheese and onion crisps! I love my food, it was the one thing I was always glad I never had a problem with. My sister is diabetic, my brother suffers from asthma, I always felt so lucky because aside from acne, I never had any kind of condition and I could more or less eat whatever I wanted. I just feel sick thinking about it. I've been gluten free for a few days now and my wee smells really strange now too and it stung when I peed this morning, is this normal?

Yes, it is so difficult. I have now been asked to teach gluten-free cooking classes so have been baking up a storm! It is interesting using different flours and starches (I have 13 kinds) but I am really grieving what I know I am missing and loved SO very much. It's rough as I never did feel ill eating as much gluten as I wanted. No food ever bothered me. To leave all that yummy stuff behind is absolutely shocking. My homemade gluten-free bread was good as gluten-free bread goes but just a week ago I was pigging out on gluten-packed ciabatta and sourdough. It just all seems so surreal and overwhelming at times. We are bombarded with food on billboards, TV, internet...yet no gluten-free commercials! :angry:

I feel for you, too - this is so dramatic. To suddenly have your life changed in a moment is rough. And all the cross contamination worries are out there. Cheese and onion crisps - you must be in the UK! I love(d) the roast chicken and thyme crisps. We're going to Paris in September which will be really, really hard. It is with my husband's work so the restaurants and such are all planned out so I will have to contact each to alert them. Man, at times it just does not seem fair!! Then I think to myself that this may have saved my life down the road... ;)

0

Share this post


Link to post
Share on other sites

I understand where you both are coming from. I was just on this board a week ago, trying to find ways around the test results, which I just didn't want to believe. Even now, I think that maybe I can go back to gluten if I challenge it and nothing happens. ;) I drove around for an HOUR crying after going grocery shopping and realizing that I can no longer have Campbell's Tomato Soup. I spent a lot of time being upset about all the foods I can no longer have and am currently going on a gluten binge and saying one last goodbye to some of my favorite recipes. I will gain a crapload of weight before I go on this diet. Just two more weeks to go. :(

So, the day after crying over soup, I learned of a mom, whose son goes to the same preschool as my daughter, who had just been diagnosed with terminal lung cancer. She has 3 young children, all about a year older than my own. The doctors would not give her an amount of time left, and only told her to live each day to the fullest. I felt so incredibly selfish and stupid for crying over soup. Here was another person who would give ANYTHING to have my problems. I owe it to her and others like her to take care of myself, live my life to the fullest, and be grateful for all that I do have. She has been in the hospital and they are hoping to bring her home to die, if she can get stabilized enough to leave. It's just tragic. I know there will always be people worse off than us, and it's not easy to make that comparison. It really hit me because it's just too close to home. So, I just got a swift kick in the ass from life. I know it sucks to have this disease. But at least we have some control over its progress. There are so many others who would give anything to trade.

This may or may not help you. I just thought I'd give my recent experience.

3

Share this post


Link to post
Share on other sites

I understand where you both are coming from. I was just on this board a week ago, trying to find ways around the test results, which I just didn't want to believe. Even now, I think that maybe I can go back to gluten if I challenge it and nothing happens. ;) I drove around for an HOUR crying after going grocery shopping and realizing that I can no longer have Campbell's Tomato Soup. I spent a lot of time being upset about all the foods I can no longer have and am currently going on a gluten binge and saying one last goodbye to some of my favorite recipes. I will gain a crapload of weight before I go on this diet. Just two more weeks to go. :(

So, the day after crying over soup, I learned of a mom, whose son goes to the same preschool as my daughter, who had just been diagnosed with terminal lung cancer. She has 3 young children, all about a year older than my own. The doctors would not give her an amount of time left, and only told her to live each day to the fullest. I felt so incredibly selfish and stupid for crying over soup. Here was another person who would give ANYTHING to have my problems. I owe it to her and others like her to take care of myself, live my life to the fullest, and be grateful for all that I do have. She has been in the hospital and they are hoping to bring her home to die, if she can get stabilized enough to leave. It's just tragic. I know there will always be people worse off than us, and it's not easy to make that comparison. It really hit me because it's just too close to home. So, I just got a swift kick in the ass from life. I know it sucks to have this disease. But at least we have some control over its progress. There are so many others who would give anything to trade.

This may or may not help you. I just thought I'd give my recent experience.

Thank you for sharing this ((HUGS))

1

Share this post


Link to post
Share on other sites

It's just tragic. I know there will always be people worse off than us, and it's not easy to make that comparison. It really hit me because it's just too close to home. So, I just got a swift kick in the ass from life. I know it sucks to have this disease. But at least we have some control over its progress. There are so many others who would give anything to trade.

This may or may not help you. I just thought I'd give my recent experience.

Amen and well said zus888.

Sorry to hear about your diagnosis, it was hard for me to come to terms with too but it but it does get easier. And it could be a lot worse. I know that sucks to hear people saying that (I was kind of angry first time someone told me that). Sounds like you have a little bit of time to eat your favorite foods, say goodbye to them and start planning your gluten free diet. Start by finding some gluten free pasta and bread you like. Don't wait till you have to go cold turkey to start reading labels and finding gluten-free foods you like.

eantime give yourself time to be angry and sad and then don't let it slow you down after that. You are going to feel A LOT better.

Hugs,

0

Share this post


Link to post
Share on other sites

I know there will always be people worse off than us, and it's not easy to make that comparison. It really hit me because it's just too close to home. So, I just got a swift kick in the ass from life. I know it sucks to have this disease. But at least we have some control over its progress. There are so many others who would give anything to trade.

Well said. I got a similar wake up call not long ago too.

There will still be days when we feel sorry for themselves. When we get frustrated at a grocery store that seems out to get us. Or when we find someone's dumped an open bag of flour on a shelf in the minuscule gluten-free section (really). I think there will always be bumps in the road. But we still have a road. It's all about having the pity party and then moving on.

0

Share this post


Link to post
Share on other sites

I understand what you are going through. I found out 3 days ago, and I question it too. However, I have changed my diet. I am tired of being bloated. It was not as hard as I thought to shop gluten-free. I went today and my fridge is full of choices. The food tastes good and seems healthier in general. I will miss certain foods, but what I learned today is I don't have to give them up entirely.

For example: I was almost in tears about pizza....well I was able to find a gluten-free frozen pizza. And I can make gluten free dough with special flour. Seems like though it takes time, you will be able to enjoy the flavors in a new way.

I wish you the best. Feel free to lean on me for new support as I am learning too. I am very glad to have the support of my husband and encourage you to educate those around you so that they can support you.

0

Share this post


Link to post
Share on other sites

I will be hoping for you that you find what I have found: such a huge relief from symptoms that it outweighs your sadness.

Look this one up for sure, but I *think* I read that if you follow a gluten-free diet, all cancer odds drop to normal or close to normal.

I have found that going gluten-free has forced me to confront the unhealthiness of my overall diet, how I'm feeding my kids, and how/what I cook. I'm having to learn to cook finally! No more leaning on, "well, I'm really good at baking". Almost everything I get that's gluten free has to be shipped to me from the USA (we live in the middle east) so I've found it easier to just go bread-free for the most part.

Every meal out, every trip to the grocery store, I'm tortured by the amazing Arabic breads and phenomenally good sweets. I never knew baklava could be so good. But when I think of how I felt before, like I was a hypochondriac or something with all the weird things wrong with me, the never-ending bathroom problems, and how I've COMPLETELY regained my health - those things just don't look as good to me.

It has been like breaking up with an abusive boyfriend. I loved bread, but it did not love me back. I hope for you to find your "silver lining", too.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,342
    • Total Posts
      917,391
  • Topics

  • Posts

    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
    • Could this possibly be related to celiac or a gluten intolerance?
      I too have more neuro than gastro symptoms...its so weird. I hope we both find answers soon!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined