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Just Diagnosed.....so Many Questions!


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11 replies to this topic

#1 kellybristol

 
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Posted 27 July 2012 - 12:36 AM

Hi Guys,

I got told by the doctor about 1 month ago I had Celiacs following a positive blood test and just have some questions which are probably so simple but cant get my head round them. Would really appreciate some advice! :) So my questions are:
1. Is there a chance that my bloods can be tested positive and my biopsy (in 1 months time) could come back negative? Or is a blood test enough for the doctor to 100% diagnose me?
2. Every morning if I wake up early, working days, I feel really really sick for about 1 hour, is this normal? (I am eating my normal diet at the moment until I go to hospital, my normal diet is high in gluten :( ) I also tend to find the less sleep I have the more sick I feel in the morning.
3. How does everyone cope with going on holiday as Im going to spain in September and panicking about my eating options!!

Thank you for looking at my post, any help would be great!
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#2 MitziG

 
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Posted 27 July 2012 - 03:16 AM

Your biopsy could still come out negative, but that does NOT mean you don't have celiacs. False positive blood tests are virtually unheard of. Depending on which tests were done, the specificity is very high, which your dr apparently realizes since he has already dx you.

Biopsy used to be considered the gold standard for dx, and a lot of drs still view it that way. The problem is that celiac causes "patchy" damage. One spot may look fine, the next may be demolished. Only in severe cases is damage visible to the naked eye, meaning, while the dr is looking for the best spots to sample, he is going in "blind" we are talking about damage visible only under a microscope. So...the solution is to take lots of biopsies from the suspected area. Usually, but not always, you can catch it then. Depending on your GI though, he may only take 1 or 2 samples. The minimum he should take is 4, and the recommendation is 8-16. So...talk to your GI beforehand and find out how many he will do. Some get offended, but you are paying for this procedure, so make sure it is done right the first time.

Then there is the pathologist. Depending on their experience, they may or may not interpret the slides correctly. It happens.

So...if by chance your biopsy says you don't have celiac...don't get excited. You probably still do.

With positive bloodwork and a resolution of symptoms on the gluten-free diet, your dx is also confirmed.

As for your symptoms...the only typical thing about celiac symptoms is that they are never "typical"! There is a very wide variety of symptoms and the way they affect each person is very different. Some feel awful within minutes of eating it, others get sick a day or two later, others just have a constant low grace crappy feeling 24 hours a day, with no noticeable intestinal symptoms. Fatigue is probably the most common theme among us. Almost every celiac was inexplicably exhausted for a long time before diagnosis.

Spend some time looking around here, you will learn a lot. Once you begin the diet you will have a million questions. Improvement is not immediate for most people, and there is definitely a learning curve. You are going to make mistakes. After awhile, it becomes second nature though, and you feel so much better you don't really care about the things you can't eat!

As for traveling...there are others here who do a lot of international travel, so I will let them advise you on the best plan of action. Welcome!
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#3 cavernio

 
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Posted 27 July 2012 - 03:46 AM

As already said, yes, there's a chance your biopsy will come back negative.
As far as false positives go, when my GI recommended that I get a biopsy done, I prompted him mulitple times why my blood test would come back positive if I didn't have the disease, to which the only answer I got was 'I'm 90% sure you have celiac disease'. So he didn't answer the question at all.

All this aside, I'm wondering about the specificity of blood tests. They test for ttg and iga antibodies generally I think, but I still don't know if they actually test for gluten specific antibodies. Both those antibodies can have other foods or antigens that they are designed to be against. I too often wonder if there's not some gluten-like microbe that initiates the immune response in the first place, and it ends up getting carried on because gluten is like the microbe.
I have been assigned a new GI and have an appointment in a couple of weeks, and I am planning on picking his brain as much as I can regarding bloodwork and how specific it is. Like for me, I *think* I have a reaction to corn, (I'm still uncertain though) and there's studies that show that some celiacs have corn specific iga antibodies. These studies also make me wonder if someone diagnosed as a regular celiac might in fact be a corn celiac only or somthing. (Even if this is possible this wouldn't be common, not trying to tell you you might be able to eat wheat safely, this is just my musings.)


I haven't travelled as a celiac yet, but there are Celiac Cards which you can take with you places which are available in many different languages.
If I end up going to Japan for my honeymoon I will be taking one of them and basically putting all my trust in servers reporting back to their kitchen what I can and can't eat. Of course, Japan also isn't big on corn or dairy or even wheat in anything but soy sauce and a specific noodle type. It seems one of the easiest places I could probably go travelling, food-wise.

As to waking up and feeling sick, well, if it's heartburn or similar, then lying down can make that worse, as does being bloated (which is a symptom of celiac disease) since it pushes up on the abodomen, pushing stomach acids etc up into the esophagus.
Another possibility is that you have sleep apnea. Not enough oxygen during the night often leads to stomach upset in the morning, one of many symptoms of it.
There's also a condition called pregnancy that can cause 'morning sickness' or so I hear :-p
I haven't heard of any celiac-only causes of morning upset stomachs, but you never know.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#4 kellybristol

 
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Posted 27 July 2012 - 06:24 AM

I can assure you that pregnancy is not something I need to be worrying about! haha! :lol:

Thank you for both your replies. Thats really helpful advice about asking how many biopsies they will take, although as I am from England and we have the NHS I cant use the excuse of I'm paying for it :( I hope it does come back positive as then its 100% closure for me and I can just get on with things as at the moment Im just so tired everyday eating my normal food! When I visited the doctor for my bloods he said to me 'You have celiacs disease' so I would've thought he would be very sure to tell me something like that.

Its all a big learning curve!
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#5 Adalaide

 
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Posted 27 July 2012 - 08:19 AM

Welcome! We're happy to have you here. Don't miss our newbie thread that will help with a lot of your questions early on as you begin going gluten free.

I'm going to say something that will likely be very unpopular. Depending on how you feel now, noticeable side effects when you eat gluten, when your biopsy is scheduled and when you leave for Spain, you may decide you want to wait until you get home to begin your gluten free journey. That of course, is a decision only you can make. If you go gluten free before you leave you should certainly look into purchasing the restaurant cards if you don't fluently speak Spanish. Do whatever you need to do to enjoy your trip, it's a vacation!

As for being especially ill in the mornings with not enough sleep? Me too! I find that if I get less than about 7 or so hours of sleep I'll be nauseous, sometimes vomit, get heartburn easily all day, have extreme vertigo, have headaches until I nap and have aches and pains all day. It's just from plain old lack of sleep. If I could stop being stupid and go to bed like a normal human being it would solve this problem, but noooooooo....... I had to stay up until 2 playing plants vs. zombies then read for 2 hours. Now I want to vomit on my keyboard.

I haven't clicked around yet, so I haven't seen if you posted anywhere else. If you haven't shared your story yet or if I just haven't read it there is one little tidbit that is the reason I ended up here I'd like to share. It's okay to be sad and angry! I cried like a baby, sometimes at home, sometimes at the grocery store. I was also mad as hell. (There really isn't any other way to put it.) It's fine, let yourself feel however you need to feel.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#6 love2travel

 
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Posted 27 July 2012 - 09:08 AM

As a frequent and avid international traveler, I will address that issue. I have yet to travel to Spain gluten free but have been to Italy, Croatia and Slovenia since my diagnosis 15 months ago. Italy is known to be one of the easiest countries on our earth to travel to with celiac. Not sure about Spain specifically but I find that even in the past year more and more restaurants and people are aware. What I would do is rent an apartment with a kitchenette if you can so you can prep your own meals at least part of the time. Then I would go to markets and grocery stores to purchase produce, cheese, etc. One brand of popular gluten-free pasta in Europe is Scharr. Many products are very good. Their bread is horrific, though, except for the ciabatta par-baked which are good. I recommend taking along gluten-free bread and other non-perishables on your carry-on luggage if you can so it doesn't get squished. Take along other snacks, too, as you can experience travel delays (we often do and we travel internationally a LOT).

We tend to eat at finer restaurants - they are often far more aware of cross contamination than chains and fast food joints and are careful with food prep. Many good restaurants do not have deep fryers, either, which I like. We also eat a lot of grilled foods such as fresh fish which will be abundant in Spain. Have Iberico ham often! Pack picnic lunches. As someone mentioned, take along restaurant cards in Spanish. They explain that you have celiac and cannot have gluten but also explains what you CAN have (i.e. rice). We laminate ours. We are going to Italy, Croatia and Slovenia again for a month (October) and Paris in September and are planning ahead. That is the key to travel - a lot of planning.

Enjoy your trip! I cannot wait to hear about it. Travel is a huge part of my life and I love to hear others' experiences. :)
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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.

#7 Nay_Nay

 
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Posted 27 July 2012 - 09:22 AM

Was just diagnosed with Celiacs yesterday. I still no close to nothing about but will be meeting with a nutritionist in a few days about it. Kind of scared to eat and a little discouraged. I am going to be traveling to Portugal and Spain in about 2 weeks and printed these great little dining cards that Im guessing explains what I cant have (smart)! Since yesterday I went to the store and bought a few gluten free products (crackers, rice cakes, etc) and its not the tastiest thing in the world (super dry and bland) but it went down.. (with a little water and a prayer)! I am having trouble remembering to stick to the diet (ate pizza for lunch now Im paying for it).. remembering what I am and am not allowed to eat is going to be my struggle. Any suggestions for a person thats new to gluten free living?
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#8 GFinDC

 
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Posted 27 July 2012 - 05:16 PM

Hi Keely Bristol and Nay-nay,

Welcome to the site!

A good way to start the gluten-free diet is to eat only whole foods for a few months, eliminate dairy, remove sugar and starchy carbs. Avoid all processed foods. It can also help to take probiotics and digestive enzymes.

Note worthy threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#9 LauraB0927

 
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Posted 28 July 2012 - 02:15 PM

Was just diagnosed with Celiacs yesterday. I still no close to nothing about but will be meeting with a nutritionist in a few days about it. Kind of scared to eat and a little discouraged. I am going to be traveling to Portugal and Spain in about 2 weeks and printed these great little dining cards that Im guessing explains what I cant have (smart)! Since yesterday I went to the store and bought a few gluten free products (crackers, rice cakes, etc) and its not the tastiest thing in the world (super dry and bland) but it went down.. (with a little water and a prayer)! I am having trouble remembering to stick to the diet (ate pizza for lunch now Im paying for it).. remembering what I am and am not allowed to eat is going to be my struggle. Any suggestions for a person thats new to gluten free living?


Welcome to the forum!!! DEFINITELY keep reading as many posts as you can on here, its how I learned so quick. As far as eating, I remember the acronym "BROW-M" which equates to "Barley, Rye, Oats, Wheat, and Malt." Those are the things we cannot have. There are some great apps for smart phones, specifically "Is that Gluten Free?" where if you arent sure about an ingredient, you can type it into the app and it will let you know if its safe or not. I think it may cost money, but it's well worth it in the end, especially if you're new to this. Another great tip that I learned on here is to stick to the perimeter of the grocery store for now - fruits, veggies, meat, poultry, fish, nuts, and dairy (if you can tolerate it). These foods are naturally gluten free so its usually a safe bet.

Remember that as you are starting your gluten free diet that you may notice that you are developing sensitivities to other foods. Also, as your body is trying to heal on a gluten free diet, you may be having some reactions (GI and otherwise) as well as something else that "we" call gluten withdrawal - there are MANY posts in this section about gluten withdrawal. Read the "newbie" thread too - that has a lot of valuable information. You will make mistakes as we all did, but it happens and dont stress yourself out about it too much. There's a steep learning curve but you will learn quick!!! Ask as many questions on here as you'd like, everyone is so helpful! Best wishes!!!!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#10 Nay_Nay

 
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Posted 28 July 2012 - 02:59 PM

Thanks everyone... I have been fishing around this site quite a bit since I was dx. This site has been a lifeline. I'm looking into downloading that app right now as I type lol! That's amazing that they have an app for that lol. Thanks for everyone's help.. Everyone's so kind even when I feel kinda miserable... Is it crazy of me to be so frustrated that at times I'm almost in tears? I know I probably sound like a child but I'm a little upset... Went to a family get together yesterday and the only thing that was gluten free was the salad I ate with no salad dressing because I wasn't sure if it was or wasn't gluten-free. Frustrated!
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#11 AmyB22

 
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Posted 28 July 2012 - 03:06 PM

I too have a million questions, and this post alone has been helpful. For me, the diagnosis post biopsy was just overwhelming, and seems like im not getting better. I think we have a lot of work ahead of us.
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Diagnosed celiac disease November 2011

#12 LauraB0927

 
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Posted 28 July 2012 - 05:12 PM

Thanks everyone... I have been fishing around this site quite a bit since I was dx. This site has been a lifeline. I'm looking into downloading that app right now as I type lol! That's amazing that they have an app for that lol. Thanks for everyone's help.. Everyone's so kind even when I feel kinda miserable... Is it crazy of me to be so frustrated that at times I'm almost in tears? I know I probably sound like a child but I'm a little upset... Went to a family get together yesterday and the only thing that was gluten free was the salad I ate with no salad dressing because I wasn't sure if it was or wasn't gluten-free. Frustrated!


Your very welcome!!! I've also found the apps "Gluten Free Registry" (its free) and "Find Me Gluten Free" very helpful too - they will pinpoint your location and then pull up a map showing you all the gluten free restaurants and stores in your area. The best thing about it is they have reviews that show other people's experiences there - some you need to stay away from! I hope those are helpful to you.

And no, its not crazy for you to be frustrated - I was crying off and on for about the first week or so. I felt different, isolated, and lost. Please keep in mind that you may be experiencing gluten withdrawal. Gluten acts on opiate receptors in the brain, so when you start eliminating it from your body, your brain can react and make you more moody or feel a bit depressed. This WILL go away! :) But everybody's body takes different amounts of time to recover, so please don't get frustrated if it doesn't go away quickly. Mine lasted a couple weeks - I was very moody, irritable, and felt like I was walking around in a fog and couldn't concentrate.

I also went to a wedding and a graduation party at a reception hall less then 2 weeks after being diagnosed. I was too scared to eat anything and left feeling really upset. I thought I would never be able to go out again. But now I have a better idea of what to look for and what to stay away from, and I'm not afraid to call a venue beforehand and ask if there's any modifications that could be made so that I can eat. Regarding family functions, I brought my own food (something that I was REALLY excited to eat) and it wasn't so bad.

I hope you continue to come onto the forum and I'm so happy to hear that its been helpful to you so far. I will keep you in my thoughts!!!

Laura
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient




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