Newly Diagnosed

[Mac0030]

I am 44 years old and have been very recently diagnosed with celiac disease. This came as a huge surprise to me because I had no symptoms. Went in for a routine endoscopy and the doctor said there was some inflammation he saw and requested the blood test. The test came back positive with no doubt as was confirmed by the pathology report. The doctor was actually surprised at the results. Not really sure what to make of this whole thing. I understand changes will need to be made but what happens if I don't go full gluten free? I hi k this would be easier to accept if I had any symptoms at all. Doctor said I would feel better in a few months but I don't feel bad at all.

[WinterSong]

Hi and welcome to the board! 

 

There is a percentage of Celiacs who do not experience any symptoms at all. Some of these people will notice small things after going gluten free like their nails grow stronger or their hair seems healthier.

 

However, it is important to realize that while you may not experience any outward symptoms, internally your body is attacking itself. If you continued to eat gluten, you would be very susceptible to the many complications of untreated Celiac including gastrointestinal caner, diabetes, other autoimmune conditions, and neurological disorders to name just a few. Basically, if you willingly consume gluten (even the tiniest amount) you are slowly killing yourself. 

 

I know it can be hard to grasp if you don't get sick, but the idea of giving yourself cancer should be enough of a reason to eat 100% gluten free.

 

Good luck! Feel free to browse the board and ask any other questions you may have.

[Mac0030]

Not sure how to start. I know it sounds stupid but in the past few days since diagnosed I have been reading like crazy. Doctor said to start eliminating immediately should be free by the end of the month. My goal is to eliminate all gluten by December 31 or sooner. Carefully looking at my diet this week to see what has gluten and what I can replace it with. It may be the hidden gluten because the biggies are not real,problems.

Any advice is appreciated not sure what I am looking at or how difficult this will be.

[squirmingitch]

First, you need to decide if you are going to have a gluten-free household or a shared household. It gets tricky having a shared household & you & EVERYONE ELSE in the house have to be extra careful & that goes for visitors as well.

 

Take a magic marker & go through each food cabinet & read labels carefully, when you find things that are gluten free then write a big gluten-free on them. If it doesn't have a gluten-free on it then you don't eat it. This is all going to be overwhelming at first but try not to panic. Shop the perimeter of the grocery store. Go with whole foods for the first 3 months bare minimum --- IMHO 6 months is better. This will give you time to get the diet do's & don'ts down & also keep you from accidentally getting cross contaminated or glutened. It will also take a lot of the stress off you until you get used to everything.

 

Read this:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Remember, if you wonder about whether anything is gluten free or not then just go to the computer & put in whatever & gluten free & you can get your answer or post on this board but you can find out real quick just by Googling. 

 

You need to check ALL your meds to make sure they're gluten-free. This goes for your OTC stuff too.

 

Even though you don't really have much in the way of symptoms; I want to warn you that you still may go through gluten withdrawal. Put gluten withdrawal in the google search box here on the board & you will come up with tons of info. on it. Go ahead & read lots of threads on the subject just so you know what can happen so if it happens to you, you won't freak out & you will know the signs & symptoms.

 

Ask, anytime. If you aren't sure then ask. 

 

Welcome to the board.

[SkyBlue4]

Just went through the whole kitchen clean out. It was harder and more complicated than I had anticipated. I had to buy a ton of new kitchen tools.

 

I live with those that eat gluten so I have to watch carefully that they don't contaminate food and surfaces. I've decided that it might actually be easier to make the whole house gluten free. It's just too difficult to contain the crumbs the little ones get everywhere.

 

Read the newbie link that was referenced above and be prepared to throw some stuff away.

Gluten is hidden in so many things and sometimes one brand will add it and another won't so it's tricky. Read all labels. 

 

As far as the risk if you don't adhere to the diet...intestinal cancer. That's the one that scared me straight.

 

Good luck!

[bartfull]

OK, I am a smoker. I know that smoking could well lead to cancer, yet I smoke. But if smoking could lead to DH, I would have quit a long time ago.

 

If the lack of symptoms and the threat of possible eventual cancer doesn't do it for you, go read a bunch of threads in the DH section here and realize that if you keep eating gluten, there's a good possibility that you could get DH. Cancer might kill you, but DH will make you want to kill yourself. That's why they call it the suicide rash.

 

And remember, there are at least 300 possible symptoms of celiac, so even though you may think you don't have symptoms, you probably do. Do you struggle with insomnia? It's a symptom. "Brain fog" and lousy memory? That's a symptom. Rashes of other types? (psoraisis or exema) Those are symptoms. Anxiety or depression? Hiccups? Swelling feet? Low sex drive? Oh my, there are SO many things that you would never assiciate with celiac, but if you go strictly gluten-free, I bet you will find yourself feeling better, stronger, more energetic, and younger than you've felt in years. 

[GF Lover]

Just a thought.  Endoscopies are usually not routine.  Why did you have one?  Were you having some kind of issue?  Even heartburn can be a symptom. 

 

Colleen

[squirmingitch]

The OP, Macoo30, doesn't sound like he/she is balking at going gluten-free & it seems has already begun the process of learning what's involved. The OP just seems to be rather bewildered that celiac disease was confirmed by pathology. 

[Mac0030]

The OP, Macoo30, doesn't sound like he/she is balking at going gluten-free & it seems has already begun the process of learning what's involved. The OP just seems to be rather bewildered that celiac disease was confirmed by pathology.

Not ballking at gluten free at all. Want to get as much information as possible. Already started marking things and by January 1 no gluten in my future. I had never heard of celiac disease prior to the diagnosis it seemed to have come completely out of left field.

The endoscopy was because I had a complete physical and lack one half of a family history. My doctor recommends endoscopy now instead of at 50 solely because I don't know one half of my family tree history for any medical problems. Also sent to cardiologist for a complete work up.

I already eat fruit and veggies fresh. Live on rice cakes and peanut butter. Thankfully pasta isn't a staple but bread with my homemade soups and bagels living here in New York is a problem. The beer no big deal casual drinker who will just switch to something like vodka of gin on that occasion. What I am fining surprising is all the hidden places that gluten can be. I am also lucky enough to be married to a woman who will now be the gluten police. I had to,change my diet once to lose 40 pounds this looks to be another change. As I said trying to get as many helpful tips as I can. Thank you all.

[kareng]

Not ballking at gluten free at all. Want to get as much information as possible. Already started marking things and by January 1 no gluten in my future. I had never heard of celiac disease prior to the diagnosis it seemed to have come completely out of left field.

The endoscopy was because I had a complete physical and lack one half of a family history. My doctor recommends endoscopy now instead of at 50 solely because I don't know one half of my family tree history for any medical problems. Also sent to cardiologist for a complete work up.

.

That seems odd. Usually they just do a colonoscopy at 50 - not an endoscopy. Did they do the colonoscopy, too? Checking for Colon polyps and cancer are usually why they do that at 50.

Fortunately, gluten doesn't really hide. It shows up in some unexpected places, like soy sauce or licorice. But is is clearly labelled in the ingredients so get some reading glasses or a magnifying lens for the grocery!

[Mac0030]

That seems odd. Usually they just do a colonoscopy at 50 - not an endoscopy. Did they do the colonoscopy, too? Checking for Colon polyps and cancer are usually why they do that at 50.

Fortunately, gluten doesn't really hide. It shows up in some unexpected places, like soy sauce or licorice. But is is clearly labelled in the ingredients so get some reading glasses or a magnifying lens for the grocery!

Actually was initially a colonoscopy but my doctor said may as well do both at the same time. I figured may as well get it all done while I was out. Reading all the labels and already have books being sent from library. Best way to get educated is to ask questions. Don't want cancer or any other problem related. As I said this came as a complete shock. Looking back on it now there may have been some signs but because they were never severe and I didn't know about this disease never gave it a second thought.

[kareng]

Actually was initially a colonoscopy but my doctor said may as well do both at the same time. I figured may as well get it all done while I was out. Reading all the labels and already have books being sent from library. Best way to get educated is to ask questions. Don't want cancer or any other problem related. As I said this came as a complete shock. Looking back on it now there may have been some signs but because they were never severe and I didn't know about this disease never gave it a second thought.

Glad to hear he did both ends!

[squirmingitch]

Mac, I have to say you are one very lucky person to have the doc you have! Make sure that one doesn't get away. And before I forget; if you would post the doc's name & city, in this thread:

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

It will help so many people out who look for a good GI in that area. So many times ppl are having to argue with GI's & twist their arms to even get them to consider celiac disease even with the most severe symptoms. It's rare to find a doc like you have. I understand the reason the doc wants to do everything with 1/2 of your parental medical history unknown but once again I have to say ~~~ BRAVO doc!

 

And you are extra blessed to have a wife who is so supportive. Terrific news ~~ give her a hug from us.

 

The 40 lbs. you needed to lose prior may have been there as a result of celiac disease. So many think that those with celiac disease are skinny, rail thin people but celiacs come in all sizes. Malabsorption can make one fat as well as it can make one painfully thin. Just another thing most GI docs (& docs in general) don't understand about celiac disease ~~~ as a general rule they think anyone who is overweight can not possibly be celiac & so many celiacs have gone w/o dx b/c of such shortsightedness. 

 

Karen, wheat is required to be listed on the labels but barley can fly under the radar can't it? As I understand, barley can be listed as malt & if one were not aware that malt is barley then they could get in big trouble.

 

Mac, as to beer, there are gluten-free beers out there. You'll just have to try different ones to see if you like any of them. Also, I don't know if you're in NYC or just the state of NY. If NYC then you should be able to find some great gluten-free bakeries & restaurants. Check out this site Mac.

 Open Original Shared Link

We also have a forum on here for finding gluten-free places in different areas.

Also there are gluten-free bagels & breads in the grocery stores. Again, you'll have to try them to find what you like best. We all have differing tastes. As to pasta, there are numerous kinds out there. Rice pasta, brown rice pasta, corn pasta (bleck!!!!! IMO) corn/quinoa pasta (yummy!!! IMO & it's Ancient Harvest brand) & other grain combinations.

 

I think when you refer to hidden gluten, you're really talking about cc (cross contaminated) items. You need to be careful of those things. An example would be Quaker rice cakes & oatmeal. You will need to have certified gluten-free oats/oatmeal. Oats are grown next to wheat, at the same time, harvested at the same time, on the same equipment & also processed the same way. This is one of the myriad reasons we say just eat whole foods for a minimum of 3 months so you have time to learn things like that & can avoid them when you begin eating other things. Personally, I eat Lundsberg gluten-free rice cakes but make sure they say gluten-free on them.

 

Just FYI, there are celiacs who had/have zero symptoms yet endoscopy reveals they have total villious atrophy. We have a few like that here on the board. It is talked about in medical texts so they know it does exist.

 

Let us know what more we can do to help you.

[squirmingitch]

Another thought. If your wife does not go gluten-free or if she does in the home but sometimes will eat gluten when away from home then she will need to thoroughly brush her teeth before you guys kiss. Yeh. You can actually get glutened that way.

[Mac0030]

My doctor is great. Dr stein in garden city ny a truly outstanding person. My wife isn't messing around.

I wish it was the celiac that caused me to be obese but sadly it was more likely the diet that consisted of fried foods, loaded baked potatoes, bags of snacks , soda and a pint of Ben and Jerry's every other night was most likely the culprit. Looking back an awful diet lucky I didn't need to lose more than that.

I live on Long Island just a stones throw from NYC but there are a few gluten free bakeries close by and trader joes. The beer oh well nothing like a kettle one and tonic with some fresh orange. I think it will be challenging at first more because the desire. I am keeping a food journal of what I am eating compared to what I did eat. I know where the problems will be starting with breakfast I usually eat oatmeal, already ordered fg stuff, and chex which happens to be my favorite. I usually eat a granola bar mid morning but can easily replace that with fruit or kinda bars. Lunch typically is a rice cake with peanut butter and either pretzels or carrots followed by a late afternoon yogurt. Dinner will really be the focus but I enjoy cooking. I make two soups a week and control all ingredients. Any small pasta suggestions are appreciated because pasta fagiola is a staple here.

What exactly are whole foods?

I know this will not be easy but I will get it done. I will miss the Milky Way though but I understand peanut butter cups are good to go

[kareng]

My doctor is great. Dr stein in garden city ny a truly outstanding person. My wife isn't messing around.

I wish it was the celiac that caused me to be obese but sadly it was more likely the diet that consisted of fried foods, loaded baked potatoes, bags of snacks , soda and a pint of Ben and Jerry's every other night was most likely the culprit. Looking back an awful diet lucky I didn't need to lose more than that.

I live on Long Island just a stones throw from NYC but there are a few gluten free bakeries close by and trader joes. The beer oh well nothing like a kettle one and tonic with some fresh orange. I think it will be challenging at first more because the desire. I am keeping a food journal of what I am eating compared to what I did eat. I know where the problems will be starting with breakfast I usually eat oatmeal, already ordered fg stuff, and chex which happens to be my favorite. I usually eat a granola bar mid morning but can easily replace that with fruit or kinda bars. Lunch typically is a rice cake with peanut butter and either pretzels or carrots followed by a late afternoon yogurt. Dinner will really be the focus but I enjoy cooking. I make two soups a week and control all ingredients. Any small pasta suggestions are appreciated because pasta fagiola is a staple here.

What exactly are whole foods?

I know this will not be easy but I will get it done. I will miss the Milky Way though but I understand peanut butter cups are good to go

Sounds like you have a good handle on it. Whole Foods - not the health food store - means foods without ingredients - rice, fruit, veggies. I did Kind bar type things, pastas , rice cakes, etc. in your area, you can probably find some really good gluten-free pastas that are more local. I have found that Kosher stores or sections often have some interesting gluten-free pasta shapes I don't find otherwise.

[squirmingitch]

Chex makes gluten-free cereals. YAY! Also Larabars are delicious & gluten-free. Glutino's makes fabulous gluten-free pretzels --- fabulous! Snyder's of Hanover also make gluten-free pretzels -- we prefer the Glutino's but the Snyder's are good too just a bit hard, you have to suck on them a bit first before crunching them LOL!

Check out Karen's suggestions on the pastas. If all else fails, I know about these b/c my hubs loves them (me too) --- the shells are pretty small in size. Check out the shapes they have available but the shells are going to be the smallest of their pasta.

Open Original Shared Link

[Mac0030]

Well today is pretty much it for any gluten that I will be aware of. Cleaned out cabinets and went shopping. Going to a dinner tonight and will watch what I eat. Went shopping and bought a bunch of fruit, veggies and other items I can eat no problem. Thanks for all the help,so,far.

[squirmingitch]

Sounds like you're well on your way. Great! Now, the problem is going to be eating out, be it at friends or restaurants. Huge, huge issues there. It's like playing Russian Roulette b/c of cross contamination issues.

Read these threads:

 https://www.celiac.com/forums/topic/105321-just-glutened-myself-at-work-assumed-it-was-gluten-free-upset-for-not-asking/

 

https://www.celiac.com/forums/topic/105109-best-way-to-deal-with-servers/

 

https://www.celiac.com/forums/topic/105245-finally-diagnosed-and-wondering-if-i-have-to-live-in-a-bubble/

 

https://www.celiac.com/forums/topic/105319-thanksgiving-day-food/

[NoGlutenCooties]

Just wanted to add that I too was completely asymptomatic before my diagnosis... so you're not alone there.  I heard about the bloodtest for it and seeing how it runs in my family I asked my doctor for the bloodtest, assuming it would be negative but wanting a baseline just to be sure.  I haven't eaten a single crumb of gluten since the doctor called with my postive bloodtest - which was confirmed about 3 weeks later by a biopsy.  I just consider myself VERY lucky that I found out about this before I had severe outward symptoms!

[bburmeister0407]

Just a thought.  Endoscopies are usually not routine.  Why did you have one?  Were you having some kind of issue?  Even heartburn can be a symptom. 

 

Colleen

 

 

Colleen-

 

I had been treated for anxiety/panic disorder and acid reflux separately. Since going gluten free the last 3 weeks, both have subsided significantly! I wish I would have known years ago....

[GF Lover]

Colleen-

 

I had been treated for anxiety/panic disorder and acid reflux separately. Since going gluten free the last 3 weeks, both have subsided significantly! I wish I would have known years ago....

So glad that your seeing results.  I had health issues greatly improved after I started the diet.  Things that I had no idea were connected.   I am still in amazement at how completely seemingly unrelated issues can improve with the gluten free diet.

 

Colleen 

[GFinDC]

Hi Mac,

 

Whole foods are the opposite of processed foods.  Processed foods are things that come in a box, or  can or are made up from multiple ingredients in a food factory.  Pizzas in a box, or cereal or store bought bread are examples of processed foods.  Whole foods are foods like a chicken, or a potato, or an apple, food in their natural, whole state.

 

The gluten that makes celiacs sick is a protein in wheat, rye and barley.  About 10% or so of us also react to gluten from oats.  Since celiac disease is an auto-immune condition, it is very sensitive to even miniscule amounts of gluten.  Think about the last time you saw a germ, but your immune system still reacts to them.

 

Sticking with whole foods means not having to understand all the ingredients and risks on the processed foods labels.  That can save you time at the grocery store when shopping.

 

Even though you haven't had GI symptoms before, you may develop them after being gluten-free for a while.  People tend to feel more sensitive to gluten after being away from it.  They may notice reactions more.

 

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.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

 

[Mac0030]

Three days so far keeping a journal no gluten. Appointment with nutritionist next week.

Whole foods and what I cook right now. Making soup tonight never knew to check chicken broth now I do.

Why limit dairy?

Does anyone recommend acidophilus and if so why? Not sure about what supplements I am going to need. Currently just taking my multi vitamin.

[kareng]

Three days so far keeping a journal no gluten. Appointment with nutritionist next week.

Whole foods and what I cook right now. Making soup tonight never knew to check chicken broth now I do.

Why limit dairy?

Does anyone recommend acidophilus and if so why? Not sure about what supplements I am going to need. Currently just taking my multi vitamin.

Some people find that eliminating dairy, for a few weeks or a few months is helpful. Celiac damages the little villi that help digest the lactose in the dairy.

Read the ingredients on everything you buy. It will become your new " normal"