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

Surprised This Morning With Celiac Diagnosis, Not Sure What To Do
0

46 posts in this topic

This morning at the crack of dawn (7:45am to be exact), I was suddenly awoken to my cellphone ringing. When I got off the phone, It took me a minute to realize what just happened. It was my doctor's nursing staff, calling to inform me that my blood tests came back positive for celiac disease, and she scheduled me for a mandatory endoscopy on Halloween, the earliest available appointment they had. She said they would be mailing me information regarding the disease and instructions for the endoscopy.

And that's it. Practically the only thing I knew about celiac disease going to sleep last night was that you can't eat gluten. It's been one of those crash course self study days, as you can imagine. It was unexpected, and to say I was blind sided is putting it mildly. Yesterday I had special k cereal, indulged in a Starbucks pumpkin cream cheese muffin, put soy sauce on my stir fry, and had breading on my chicken. Even my multivitamin and calcium supplements I take every day have wheat (centrum chewables and viactive caramel chews). When I took the blood test last week, I had coffee cake and a turkey pita sandwich maybe 30 minutes before going into the lab. I joked with the allergist reception staff that the market food in the hospital square smelled so good, and they told me to go try the fresh danishes. I vividly remember saying 'Well it's a good thing I haven't been tested for celiac disease yet!' I think I signed my own death warrant in that very moment.

It wasn't actually my allergist who scheduled me for the test. My gastro who I had seen a few weeks earlier thought it was strange my IBS responded to steroids I had taken for nasal inflammation. Simply because I told him this random fact in our appointment, he felt that I should rule out celiac disease. I went home that day without taking the test. It wasn't until my appointment with my allergist, who scheduled me for an allergy lab that day, that I remembered the celiac test was pending on my file. It was on my mind when I was talking to the reception staff about the danishes on my way out. I had my delicious coffee cake, and then had my blood drawn.

At least I was able to have one last pumpkin cream cheese muffin.

Medical history wise, it's a long story how I got here. I am 29, female. The short version is that 2 years ago I became sick with anxiety symptoms, constant panic attacks, food aversions, dizziness. 1.5 years ago I tested positive for mononucleosis after my lymph nodes started protruding on my neck giving me a cancer scare, and then my tonsils blew up, and my liver tested positive for viral hepatitis. Even though my liver rebounded quickly, I never recovered, having been bed ridden ever since. Sure, symptoms have changed over the months, but the constant lethargy, dizziness, and stomach issues remained the same. My gp told me to take a year off and to see a psychiatrist. I took her advice. After a year of waiting, I started aggressively looking for answers. I was having severe rhinitis at the time, and they put me on flonase for 2 months. Then since that didn't work, they put me on a 6 day steroids pak. Since that only kind of worked, they took a ct scan of my sinuses to take a look. They found two mucus retention cysts, and I was given access to see the ENT department. The ENT doctor examined me and said it's allergies, and had his staff refer me to see the allergist. Backing up some, after years of constant stomach and digestive problems, my doctor would not let me see a gastro specialist for just IBS, but once I developed internal hemorrhoids from it, they let me have a consultation. It was during that consultation that I mentioned the steroids and how my stomach felt less inflamed. He told me I can rule out celiac disease, but it's most likely just IBS and prescribed me to eat better and do yoga daily, which is why I didn't take it then. It sounded optional, like getting a flu shot. I guess I'm lucky that he put it on my file, and that I had to go into the lab anyway for my allergist. Or I'd probably never would have known.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the club!

You still have a few weeks of eating eat you want, reading around and learning before your endoscopy. Don't stop eating gluten until you have your endo.

0

Share this post


Link to post
Share on other sites

KEEP EATING GLUTEN until after the endoscopy.

richard

0

Share this post


Link to post
Share on other sites

Hi,

You are right, it's a good thing you got tested and found out about the celiac disease! Symptoms would only get worse with more time. You should stay on gluten until all the testing is complete though, and then you can start the gluten free diet. In the meantime, you can eat up all the remaining gluten in the house and start learning about how to eat gluten-free. The whole foods diet is a good way to go when starting gluten-free. It is simpler and hardly any label reading to do.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

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

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.nature.co...jg2012236a.html

0

Share this post


Link to post
Share on other sites

If I need to keep eating gluten for my endoscopy, how much gluten is too little?

If I am going to have to eat it, I want to make the bare minimum effort. lol.

0

Share this post


Link to post
Share on other sites




Welcome to the board. Lots of helpful people here!!

In case you didn't get the message in the previous posts . . . DON'T STOP EATING GLUTEN UNTIL AFTER THE ENDOSCOPY!! (Just trying to make a point :lol: :lol: )

In addition to taking this time before your endoscopy to eat up as much of the gluten out of your house that you can, and educating yourself. . . you can also experiment with some gluten free recipes and products so that you have some options ready when you go gluten free.

7:45 am huh? I don't think anybody is even at my doctor's office until 8:30.

0

Share this post


Link to post
Share on other sites

7:45 am huh? I don't think anybody is even at my doctor's office until 8:30.

I know, I was quite shocked. Actually my cellphone says they called at 7:39am and the call lasted a grand total of 1 minute. I'd almost think it was a dream if I didn't have my call history on my phone as evidence. I have a tendency to forget everything that happens within the first 15 minutes of waking up.

0

Share this post


Link to post
Share on other sites

Here is the thing....you have celiac. The biopsy may or may not show it, they can be iffy. But the blood tests don't lie.

So the reality is that once your endoscopy is done, you have to go gluten free, FOR THE REST OF YOUR LIFE.

Enjoy every last Starbucks pumpkin muffin you can now. Have fun!

0

Share this post


Link to post
Share on other sites
Medical history wise, it's a long story how I got here. I am 29, female. The short version is that 2 years ago I became sick with anxiety symptoms, constant panic attacks, food aversions, dizziness...I was having severe rhinitis at the time, and they put me on flonase for 2 months. Then since that didn't work, they put me on a 6 day steroids pak...Backing up some, after years of constant stomach and digestive problems, my doctor would not let me see a gastro specialist for just IBS, but once I developed internal hemorrhoids from it, they let me have a consultation...I guess I'm lucky that he put it on my file, and that I had to go into the lab anyway for my allergist. Or I'd probably never would have known.

Anxiety, severe rhinitis that didn't respond well to medication, and IBS were some of my major symptoms. All have responded well to my voluntarily going gluten-free earlier this year. I self-diagnosed for several reasons and believe I am gluten-intolerant rather than full-blown celiac, but I feel so much healthier now than I have in years. My anxiety/OCD are much more manageable now as are most of my other symptoms. Every time I start to doubt my gluten intolerance, I remind myself of how well my body has responded. The biggest proof for me is the fact that this is the first ragweed season in years that I have not been a miserable, exhausted, nose-running-all-the-time mess! Going gluten-free can be a huge adjustment at first, but I wouldn't trade how much better I feel now for anything.

0

Share this post


Link to post
Share on other sites

Sorry to hear of your diagnosis but I;m glad you are going to be able to make yourself feel better by cutting a few foods out of your diet. It's daunting at first but it's amazing how quickly it becomes simple. I'm sure you'll do great figuring out what you can and can't eat. There are some really good books out there on it that I found helpful. I think Green's book, Celiac Disease: a Hidden Epidemic is my favourite.

I was diagnosed based on blood tests without the endoscopy, so I don't quite understand why doctors want you to have a "mandatory" endoscopy... They've already said that you have celiac so why do they need to schedule an endoscopy? To look at the intestinal damage which will not help unless other issues are expected to be helped? Personally, I would call the doctor back (at a more humane hour - lol) and question the need for the endoscopy. I'm not a fan of invassive procedures like that where they need to knock you out unless it's absolutely necessary...but that's just me. :)

Good luck with the diet. :)

0

Share this post


Link to post
Share on other sites

Hi,

2 slices of wheat bread a day should do it. You don't have to go overboard on the gluten.

0

Share this post


Link to post
Share on other sites

I agree on the Endo, why take the risk when it will change nothing other than your checkbook balance, you still need gluten free life.

Kaitiana, glad to see I'm not the only one skipping formal diagnosis. PCP said he thinks it is, just worried about malabsorption so see GI for tests (guessing he has great insurance, I don't)

0

Share this post


Link to post
Share on other sites

I agree on the Endo, why take the risk when it will change nothing other than your checkbook balance, you still need gluten free life.

There is minimal risk in the endoscopy.

There is value in having the documented medical diagnosis.

As long as you are in complete control of your own life, who cares.

When you have to entrust your feeding to others, it matters. You may want an official diagnosis for accommodation at a school, a workplace, a hospital, or someday, a nursing home. A documented diagnosis will ensure that you get ADA accommodation.

0

Share this post


Link to post
Share on other sites

Here is the thing....you have celiac. The biopsy may or may not show it, they can be iffy. But the blood tests don't lie.

I had an endo when I had the colonoscopy done.....bottom for IBS and some blood...endo for acid reflux. Imagine my surprise when they called with CELIAC! Those villa are BLUNT in my gut.

Blood tests after the fact==NEGATIVE. Go figure that out.

I read later that sometimes blood tests aren't sensitive enough and at that point, it's the biopsy that doesn't lie (and a stool test is more sensitive).

0

Share this post


Link to post
Share on other sites

I suffered for about 10 years looking back with the last three from hell before I received my diagnosis . Colonoscopy was positive for endoscopic colitis , blood work was always negative, finally after being told " I can't help you " by a neurologist for horrific head pain ... Sever depression and hopelessness ...

Finally a positive endoscopy by a celiac GI doctor in NYC.

Now everything makes sense and life can only get better!

Golden standard is an endoscopy for absolute diagnosis.

Don't be surprised if additional food allergies arise along the way, they seem to follow along with celiac.

0

Share this post


Link to post
Share on other sites

Welcome!

Just wanted to clarify - because this discussion would have confused me when I first learned that I had a positive blood test for Celiac - those with Celiac Disease can have:

positive blood work / positive biopsy

positive blood work / negative biopsy

negative blood work / positive biopsy

There are over 300 symptoms - many with Celiac Disease do not present with classic symptoms and there are some folks without notable symptoms.

We come in all shapes and sizes, some relatively healthy, some very ill - it is up to each person and their doctor to decide what testing should be done.

Personally - I wanted as much information as possible and am glad that I had endoscopy because it revealed the serious damage Celiac Disease had caused while doctors had scratched their heads or dismissed my symptoms for decades.

Take these three weeks to learn about Celiac Disease and prepare for the transition to your new gluten-free life. The transition is tough, but finding that you can not have gluten before major damage to your health is priceless.

Good Luck to you :)

PS...your doctors may have already ordered them, but make sure you have a full celiac blood panel before you remove gluten - this information can be important to have for comparison in your follow up care.

1

Share this post


Link to post
Share on other sites

Thanks everyone. It's good to know that there is such a supportive community that I can talk to. It's comforting not being alone in this.

I'm on my way getting used to the gluten free diet, but is it normal to be a little bit ocd about it? My husband is a gluten eater, and he's a kitchen tornado. His favorite food is noodles and beer (he's Japanese). He works at night because of the time difference, and so when I go to sleep, the kitchen is clean, and I wake up to a mess with every pot and pan caked in noodle water, spilt soy sauce and fried crumbs, cups of beer, etc. It never ever bothered me before, not even the whole having to clean up a mess first thing in the morning part, but now its like walking into a safety hazard zone. Should I wear gloves? Do I need to get myself a whole second set of cookware, cooking utensils, and eating utensils? Does a dish washer work against gluten? I'm seriously afraid of cooking my rice noodles in the same pot as his wheat noodles even after it's been run through the wash.

I'm still conflicted about getting the endoscopy. My health care provider (Kaiser) said I need to have it done, and my best friend is going to be my chaperone/driver, but my husband is very much against it and said that if the blood test was positive, then it should be enough. He's really worried that there could be complications from the endoscopy and the anesthesia. I guess, I should call my gastroenterologist and talk to him about it.

0

Share this post


Link to post
Share on other sites

He's really worried that there could be complications from the endoscopy and the anesthesia.

Nothing is 100% risk-free.

Usually, the endoscopy procedures is done with sedation but not anesthesia. You will be groggy after the procedure, and will likely have no memory of it. You WILL need a responsible adult to take you home after the procedure and stay with you until you are fully alert--a few hours, at least.

I have traveled that road three times. It is not a big deal. Complications are not unheard of, but are extremely rare.

0

Share this post


Link to post
Share on other sites

Hi,

Hubby may have to change his ways some. The biggest problem would be baking or cooking with wheat / gluten flour. The flour is a fine powder and can get airborne and settle on surfaces throughout the area. Or be breathed in.hours later. There are gluten-free rice noodles available, and San-J makes a gluten-free tamari sauce. So he can still eat his noodles and soy sauce. gluten-free beer is out there too. Kissing can be a problem tho, and he needs to brush and gargle before full on face sucking. You are not nessecarily bad off to be a little paranoid about gluten avoidance at first. It can take a while to learn all the places gluten can hide in foods, and the different names they use for it. That's why it is better to stick with whole foods instead of processed foods when starting the gluten-free diet.

0

Share this post


Link to post
Share on other sites

That kitchen would scare any of us.

You'll need your own toaster, colander, can opener, etc. I highly suggest getting a second set of cookware and cooking utensils in a different color to minimize cross contamination. If it is possible designate one counter as a gluten free zone for your food prep - if not, prepare everything with a barrier - gluten-free cutting board, plate, foil, etc. The dishwasher is sufficient for getting plates and eating utensils clean. When I first went gluten-free we scrubbed some items by hand and then ran them thru the heavy cycle of the dw and had no problem.

As you find your way and replace all of your favorite gluten containing foods, your husband may decide he'll go gluten-free in your home. Mine did, but we started with a combined kitchen and evolved over a year or more. No need to rush this - the learning curve is enough for you to deal with right now - your husband will evolve along with you in time. That being said - should he be volunteer to go gluten-free in the home - take him up on it.

Oh - I'd suggest your husband learn to do his own clean-up - if that's not possible I'd wear gloves when tackling the problem yourself.

Hang in there...this does get easier.

0

Share this post


Link to post
Share on other sites

Thanks everyone. It's good to know that there is such a supportive community that I can talk to. It's comforting not being alone in this.

I'm on my way getting used to the gluten free diet, but is it normal to be a little bit ocd about it? My husband is a gluten eater, and he's a kitchen tornado. His favorite food is noodles and beer (he's Japanese). He works at night because of the time difference, and so when I go to sleep, the kitchen is clean, and I wake up to a mess with every pot and pan caked in noodle water, spilt soy sauce and fried crumbs, cups of beer, etc. It never ever bothered me before, not even the whole having to clean up a mess first thing in the morning part, but now its like walking into a safety hazard zone. Should I wear gloves? Do I need to get myself a whole second set of cookware, cooking utensils, and eating utensils? Does a dish washer work against gluten? I'm seriously afraid of cooking my rice noodles in the same pot as his wheat noodles even after it's been run through the wash.

I'm still conflicted about getting the endoscopy. My health care provider (Kaiser) said I need to have it done, and my best friend is going to be my chaperone/driver, but my husband is very much against it and said that if the blood test was positive, then it should be enough. He's really worried that there could be complications from the endoscopy and the anesthesia. I guess, I should call my gastroenterologist and talk to him about it.

If you have positive blood work, especially tTg and EMA, then that is a formal diagnosis and the only reason you need an endo is if you want to see exactly how bad the damage is. Some people need to see pictures of damage to convince themselves to remain gluten-free for life.

You also do not need new pots and pans unless the ones you have are porous. Stainless steel or cast iron are fine, as long as the cast iron is coated, preferably with enamel. As long as you scrub non-porous cookware well, you will get sick from sharing pots. Gluten cannot absorb into cookware unless it is porous.

0

Share this post


Link to post
Share on other sites

Hi guys, just an update.

I had my endoscopy yesterday. It was pretty much a non-event. I was scared going in, that I wasn't able to sleep the night before, combined with being so hungry from fasting, I basically fell asleep on the hospital bed before they even gave me the sedative. They thought it was pretty funny. All I can remember was the burning sensation of the sedative when it entered my IV, and feeling it flow up my arm to my heart and lungs and into my brain, and I could taste it on my breath. Then it was lights out, literally, because they turned all the lights off in the room, and like half a second later I was waking up in recovery. I don't remember any of my discharge instructions. My bff took me home, and she said the doctor talked to me, and I just made waving arm motions at him to stop talking, and the only thing I kept saying was that I was tired.

He didn't say anything to her about what he saw, only that my biopsy results will take 2-3 weeks, and to start eating gluten free. Since I have Kaiser, they updated my past visit section on their website, and under this visit's diagnosis he wrote, 'Abnormal Laboratory Findings' so I'm guessing he must have seen something while he was digging around in there, or maybe he was referencing my blood test. Who knows.

I wish it didn't take so long to get back biopsy results. :(.

I did manage to get my blood test results in detail. According to my allergist/immunologist, my antibody levels are really high.

Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive

(tTG) Ab, IgA: >100

Endomysial Ab IgA: Positive

Endomysial Ab Titer: 1:160

IgA, Serum: 286

If you had an upper endoscopy, how long did it take to get your results?

Edited by rorenchan
0

Share this post


Link to post
Share on other sites

The sinus symptoms are interesting. I posted this info elsewhere, but it's somewhat relevant. I suffered constant post nasal drip and I had a few sinus and throat infections along the way. I also was forced to constantly clear my throat - about once per minute while awake. It was embarrassing and irritating. Once gluten-free I think it was somewhere within the first couple weeks gluten-free that I noticed the sinus issues disappeared. I've had those issues for years and they simply vanished. Got glutened and they returned, now nearly gone again. It's amazing how much of our lives and bodies are impacted by gluten so you have a lot to look forward to.

As mentioned, gobble up all that gluten now while you can. I gave up a lot of my favorite foods, but you'll never regret for a moment making yourself feel so much better. No food is worth physical and mental pain.

0

Share this post


Link to post
Share on other sites

Pathology of my biopsies usually takes about a week.

I must say, your blood results clearly indicate Celiac Disease. The tTG IgA is very high and the EMA-IgA indicates damage to your small intestine. Not essential to diagnosis, but did your doctor run any IgG based tests or either Demiated Gliadin Peptide blood test? The DGP is important as it is a good test to repeat at follow-ups to be sure you are being as compliant as possible to removing ALL gluten.

Should your biopsies be negative - I'd guess they will be positive - it is time to remove ALL gluten - if you haven't already.

Let us know if you have any other questions!

0

Share this post


Link to post
Share on other sites

Pathology of my biopsies usually takes about a week.

I must say, your blood results clearly indicate Celiac Disease. The tTG IgA is very high and the EMA-IgA indicates damage to your small intestine. Not essential to diagnosis, but did your doctor run any IgG based tests or either Demiated Gliadin Peptide blood test? The DGP is important as it is a good test to repeat at follow-ups to be sure you are being as compliant as possible to removing ALL gluten.

Should your biopsies be negative - I'd guess they will be positive - it is time to remove ALL gluten - if you haven't already.

Let us know if you have any other questions!

My doctor only ran the one blood test, we haven't ran any tests for IgG yet. It's all so new to me, I'm still trying to figure out what the different tests represent. My doctor said that depending on the results of my biopsy, I'll be able to get an official diagnosis, and then he'll refer me to a nutritionist who specializes in celiac disease, so perhaps I can ask the nutritionist to run the extra tests before we get started. Thanks for the heads up!

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
      104,640
    • Total Posts
      921,544
  • Topics

  • Posts

    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined