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Diagnosed And Very Upset Now


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#1 ardz

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Posted 15 February 2011 - 11:09 AM

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.
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#2 AzizaRivers

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Posted 15 February 2011 - 12:32 PM

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.
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Celiac diagnosed October-November 2010 (blood test negative, biopsy inconclusive after gluten-free for 6 weeks, miraculous diet results).

October 2010: Gluten free.
November 2010: No HFCS or artificial sweeteners.
March 2011: Gradually fading out soy.

#3 Marlie

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Posted 15 February 2011 - 12:41 PM

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.
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#4 mushroom

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Posted 15 February 2011 - 01:03 PM

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. :(
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
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Citric acid free June 2009
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(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 love2travel

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Posted 15 February 2011 - 02:09 PM

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...
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#6 ardz

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Posted 16 February 2011 - 12:23 AM

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?
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#7 AerinA

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Posted 16 February 2011 - 07:00 AM

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.
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Gluten free since January 12, 2011

Significant improvement in migraines, not-quite-narcolepsy, stomach issues and brain fog.

Hoping for improvement in absorbing thyroid meds.

#8 Looking for answers

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Posted 16 February 2011 - 09:19 AM

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!
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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 ľ Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed

#9 frieze

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Posted 16 February 2011 - 06:23 PM

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.
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#10 cyberprof

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Posted 16 February 2011 - 10:23 PM

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 it’s not that expensive. I saw that you’re in England. I make a great gluten-free Yorkshire Pudding for Christmas. You’ll 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 you’d 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!
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#11 love2travel

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Posted 18 February 2011 - 07:49 PM

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... ;)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#12 zus888

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Posted 19 February 2011 - 12:30 PM

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.
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Suzanna

#13 a1956chill

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Posted 19 February 2011 - 01:18 PM

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))
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#14 okieinalaska

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Posted 19 February 2011 - 03:16 PM

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,
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Amy in Alaska
Gluten Hit Girl

#15 shopgirl

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Posted 19 February 2011 - 03:38 PM

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.
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free


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