Well I Just Found Out I Have Celiac Disease

[Baston8005]

I'm 32 year old male. I am married and my wife and I are expecting our 1st born child in about a month. I wanted to find out if there was anything wrong with me or if it was nerves or was it due to the stress of knowing my life was going to change in a big way. Over the last few years, I started having to go to the bathroom more frequently. 5-6 times a day, but I never really thought anything of it as I always have had a fast metabolisim(since as early as I can remember, maybe I have had celiac disease all my life???). It was always after I had a pizza or pasta or....insert almost any starchy food here.

I finally got sick and tired of it. I visited my doctor and sure enough, the blood test confirmed celiac disease.

Where do I go from here???? I brew my own beer and enjoy drinking socially 1-2 times a week with the boys and I enjoy all the foods that make me hit the bathroom.

My main ?'s are...

What will this disease do to me if I don't change my eating habits? Can I continue to socially drink and just pay the bathroom price the next 2 days?? Or will that somehow screw up my life when I get older?(I.E. carry a bag for my waste products)

Any insight will be greatly appreciated.

[nikki-uk]

To be blunt,-if you are diagnosed with coeliac disease-and continue to eat gluten foods you put yourself at serious risk of lymphoma of the bowel.

It is alot to take on board I know.My husband was diagnosed a year ago and couldn't believe a simple thing that everyone eats could do so much damage.

Unfortunately my husband too thinks he had it all his life(he was 40 when diagnosed)but was bedridden and extremely ill before the diagnosis was made.

He was so ill,even the docs thought it was cancer.

My husband had a close shave-and a chance to put right the years of damage done to his small bowel.Years of his life were lost to illness,and he cannot ever take a chance on going back there.

The gluten free diet is an'all or nothing' diet I'm afraid.

Every time you eat gluten you do damage,however small.

I'm sorry to sound so harsh,my husband always enjoyed beer.

It is tricky at first,but it get's easier as time goes by,until it becomes second nature.

Good luck staying gluten-free!

[Lisa]

Welcome to the board! You have just entered the biggest treasure on this site, much more than you can imagine. I have been reading/monotoring this site for about 4 months and it truly is a God-send.

To begin with, read everything you can read on this message board, it is a great resource. There are so many people that have been where you are now. We still have a life, a changed life, but it can also be very fulfilling. It is all what you make of it.

Jenvan (Jen) has a great list of adult beverages that will be safe for you to consume. Sorry about the beer though. . celiac3270 and others can send you the Delfi Product List that you can download on your computer. This is a list of Gluten Free Product (by name) that will help you shop for food this is gluten/wheat safe.

The healing process will take several months and it will vary from person to person, depending on the amount of damage to your small intestines. Please remember that you will not begin to feel better unless you are totally gluten free, unfortunately, for the rest of your life.

Cooking gluten-free can be just as good as non gluten foods.

I am sure that others will kick in, but if you have any specific questions, please post and you will alway get an answer from someone that is sure that the information is correct and safe.

Knowing that you have a diognosis, is always better than the worry and anxiety of not knowing what is wrong with you.

It's kind of a ride, until you get the swing of it. But it gets better. Take care and ask away all you want.

Lisa B.

[Baston8005]

My doctor gave me no information on Celiac Disease and could not explain my blood test in length to me.

Could someone point me in the direction of a specialist in the Connecticut area to help explain the #'s.

I going to post my #'s and hope someone can explain to me in simple terms what they mean and the level's of Celiac I am dealing with.

Antigliadin

IgG 10.2

IgA 8.1

Homocysteine 14.3

CRP-Ultrasens .86

Endomysial IGA >=1:160

Thanks Again

[pixiegirl]

You can still go out with the guys just don't drink beer... (although there are one or two gluten free beers but you won't find them at bars). Drink wine or if thats too wimpy for the "guys" drink scotch or bourbon (or whatever you like). I use to love beer but now I stick to wine or martini's.

When you first learn you have Celiac it seems so restrictive but after being gluten free for a year now... its just second nature. there are tons of things you can still eat.

You asked what would happen if you continue to eat gluten, to put it simply you will probably kill yourself, cancer or some other auto immune thing and you won't feel all that good while your doing it. You've got a new baby coming into your world, one of the very best things you can give him is a healthy daddy.

If you stick around this board for a while you will learn so much...

Susan

[Jnkmnky]

The autoimmune diseases associated with celiac disease are far more scary than the restrictions celiac disease impose. If you're soon to be a dad, you're going to want to be healthy a good long time to enjoy running, playing ball, swimming, hide and seek, lugging a stroller in and out of a car. Is restricting gluten from your diet going to have a negative impact on the life you want to have with your family? Ulcerative colitis will, Arthritis will, diabetes will, crohn's disease will, cancer will, gluten ataxia will... the list goes on. None of those secondary diseases are any fun at all. The best you can do with them is manage the pain. At least with Celiac disease you can outsmart the disease...take away it's power. No gluten... No meds. No drs. Years of health to spend with your new baby.

[aikiducky]

If you already have experience with brewing your own beer, maybe you could brew beer with gluten free grains?

Start reading this messageboard, and celiac.com, you'll be an expert in no time.

Here are, roughly, the stages you'll go through, just so you know... denial, anger, grieving, acceptance. Don't spent too much time in denial, just as much as you need. Good luck.

Pauliina

[Guest nini]

welcome to the board and your new healthier life!

I remember reading some guys web site a year or two ago where he has learned to brew his own gluten-free beer at home... I'm sure you could probably google it and find some info.

[Baston8005]

Anyone know of a Celiac disease Doctor in Connecticut. I would like to find out if any damage is has occured to my intestinal trac. On another note, is weight gain a sign? I am 6'2, graduated high school at 172, graduated college at 210 and in the last 8 years, I have packed on weight. I am 260 now and in the last 7 months gained 35 lbs. I have had the same routine for the last 8 years. Is my body compensating for something missing in my diet???

[Lisa]

Anyone know of a Celiac disease Doctor in Connecticut.  I would like to find out if any damage is has occured to my intestinal trac.  On another note, is weight gain a sign?  I am 6'2, graduated high school at 172, graduated college at 210 and in the last 8 years, I have packed on weight.  I am 260 now and in the last 7 months gained 35 lbs.  I have had the same routine for the last 8 years.  Is my body compensating for something missing in my diet???

<{POST_SNAPBACK}>

I have lost weight over many years 5'8", 123 most likely through no obsorbtion. There are others here that have gain weight. Most Dr.'s don't specialize in Celiac Disease, unless they are associated with a learning institution such as Mayo and John's Hopkins. Most GP's are aquainted with celiac disease in med school and few have seen "real cases". I read a post from someone on the site, that her dr. called celiac disease the "designer disease" currently.

I would suggest that you contact your local hospital and check with the administration and inquire which doctor would be more educated in digestive diseases. Many drs. have outside offices, aside from their hosp. work.

To determine whether your intestines are damaged, you will have to have an endoscopy exam with a biopsy. It is a no-brainer, they shoot you with demeral and you go to sleep. Send a tube down your throat, take pictures, and clip a little sample to go to the lab to test for a firm diognosis. You wake up and sleep the rest of the day, then ask you wife what the doctor said.....for three days.

I am in NC and can't help you with Conn. drs. Hope this will help you.

Celiac Disease is not fatal by any means. If not addresses, it can open the door to other issues that may be. Please take it seriously. Wish you well and please read all you can from this message board. You will learn SOOOOOO much. Stay cool and relax and read.

Lisa B.

[Guest nini]

weight gain is def. a symptom. In fact I ballooned up to 260 right before my dx. I am now 2 1/2 years into this and have lost over 80 pounds just by being gluten free.

[KaitiUSA]

Celiac Disease is not fatal by any means. 

Celiac can be fatal if ignored. It leads to 40-100 times increased chance of cancer, as well as risks for diabetes, osteoporosis, liver/pancreas/kidney/gallbladder problems, nerve disorders, thyroid disease, etc. It takes an average of 10 years off of your life if not followed.

This is an all or nothing diet...even small amounts as often as once a month is just like not following the diet at all.

Things from products you use, to medications, to foods all need to be checked....kissing is also a concern if your wife just had gluten. Everything needs to be eliminated.

It also takes time to heal so do not expect an instant change. Took me 8 months to get back to normal but I did feel alot better well before then. Some people are faster than that and some are slower...depends on damage, age, etc.

Also, there are over 200 symptoms with celiac and everyone is different and yes weight gain is one of them.

If you would like some lists that will help you with what you can have you are welcome to email me.

Gluten can hide under so many ingredients but once you learn what you can have it gets tons easier and this site helps so much.

There are quite a few gluten free specialty products that taste like crap but there are alot of good ones to so do not get discouraged. There are great breads, donuts, pizza, pasta, and pretty much everything that contains gluten has a substitute that is gluten free. You will find out alot from this site.

There are even alot of mainstream brands from the regular store that we can have..I can send you the lists if you would like and that will definitely help you out.

Also, if you go to the home page and scroll down to the bottom there is a link to recommended doctors by other celiacs. You can check your state to see if there are any. Many doctors know nothing when it comes to celiac so when you find a good one stick with him/her.

[Lisa]

I have lost weight over many years 5'8", 123 most likely through no obsorbtion.  There are others here that have gain weight.  Most Dr.'s don't specialize in Celiac Disease, unless they are associated with a learning institution such as Mayo and John's Hopkins.  Most GP's are aquainted with celiac disease in med school and few have seen "real cases".  I read a post from someone on the site, that her dr. called celiac disease the "designer disease" currently.

I would suggest that you contact your local hospital and check with the administration and inquire which doctor would be more educated in digestive diseases.  Many drs. have outside offices, aside from their hosp. work.

To determine whether your intestines are damaged, you will have to have an endoscopy exam with a biopsy.  It is a no-brainer, they shoot you with demeral and you go to sleep.  Send a tube down your throat, take pictures, and clip a little sample to go to the lab to test for a firm diognosis.  You wake up and sleep the rest of the day, then ask you wife what the doctor said.....for three days.

I am in NC and can't help  you with Conn. drs.  Hope this will help you. 

PS:  I forgot to add, if you plan to do further tests to confirm your possible damage, DO NOT GO GLUTEN FREE.  Stay on a gluten diet, or your test will present themselves as a "false possitive".  Do not change your diet until all your test are completed.  Very important.

Celiac Disease is not fatal by any means.  If not addresses, it can open the door to other issues that may be.  Please take it seriously.  Wish you well and please read all you can from this message board.  You will learn SOOOOOO much.  Stay cool and relax and read.

Lisa B.

<{POST_SNAPBACK}>

[Matilda]

..

[Claire]

What will this disease do to me if I don't change my eating habits?  Can I continue to socially drink and just pay the bathroom price the next 2 days??  Or will that somehow screw up my life when I get older?(I.E. carry a bag for my waste products)

Any insight will be greatly appreciated.

<{POST_SNAPBACK}>

This disease can wreck your life if you don't COMPLETELY change your earing habits. No cheating - no "just this once".

How do I know? I have not yet been diagnosed as Celiac. I have a diagnosis of spinocerebellar ataxia - in English that means the brain is damaged in an area related to motion, balance, swallowing etc. We know that gluten has played a role in this and it is being suggested that I may have both this disorder AND celiac. Gluten causes brain damage, eye damage, kidney and liver damage - damage to almost any part of the body you can name. Untreated celiac will spin off to other autoimmune diseases. Lupus, MS, LGS, osteoporisis and on and on.

Cut the beer etc. It's not worth it. Claire

[Claire]

You can still go out with the guys just don't drink beer... (although there are one or two gluten free beers but you won't find them at bars).  Drink wine or if thats too wimpy for the "guys" drink scotch or bourbon (or whatever you like).  I use to love beer but now I stick to wine or martini's.

Susan 

<{POST_SNAPBACK}>

Not being much into alcohol this post prompts a question. Aren't scotch or bourbon (or whatever you like) grain based alcohols. I know fruit based alcohols are okay but I thought these were not. Claire.

[skoki-mom]

Hi there!

I'm kind of late responding, but wanted to welcome you to the board I'm sure by now you have read all the posts and now know why you need to go on a gluten-free diet. However, I noticed in one place you said you wondered if there was any way to find out what the damage is to your bowel. The answer to this is yes, and I can't believe your doc didn't talk to you about it. A small bowel biopsy is done via endoscope (via the mouth) and they take samples and look at it under a microscope. Personally, I am very glad I had it done. It put my mind at ease about a lot of things. What you need to know right now is, if you decide to have a biopsy, you must be eating NORMALLY in order for the tests to be accurate. My EMA was even more reactive than yours, but yours is pretty reactive as well. It is over 99% likely your biopsy would confirm the diagnosis of celiac disease. A bit about me.... I am a completely asymptomatic person with celiac disease. I got screened because my sister was diagnosed following symptoms last winter. I was totally shocked! I wondered if it was still bad for me to eat gluten since I didn't have any symptoms, but I learned it is very important for me to follow a gluten-free diet. I was some pissed off, let me tell you. I was really really mad that I was not skinny and I had this disease that was supposed to make you skinny and that was my one perceived bonus of having celiac disease. I felt totally cheated. I wished for a long time that I had never even been screened, because my life was going along just fine and I felt great. It was April when my bloodwork came back positive, June before I got my GI consult, and the end of Aug when I had my biopsy. By then, I had done enough research to know it was going to come back conclusive, which of course it did. What really surprised me was that I have total villious atrophy, which is as bad as it can get!

I have bad moments, I freely admit it. Times I am desperate for a Big Mac, it makes me cry. But then I remind myself that there are a lot worse things than celiac disease. As well, besides the villi damage, I am not sick from celiac disease. All my nutrients are fine, my bone density is fine, my thyroid is fine, etc etc etc. Playing catch up is really hard. I'm lucky I can be proactive about it. I really don't want to be 60 years old, crippled with osteoporosis and stuck with a colostomy from bowel cancer!!! I have 2 little girls and I want to live a long and healthy life with them. It's only been 2 months, and my kids are already keyed in to my diet, they know what gluten is, and why auntie and mommy can't have it. It's kind of become normal to them already. I try very hard to stay positive about it.

Well, this got sort of long, sorry! What you want to do now re: the biopsy is up to you. The procedure itself was a cinch, you get some good sedation and go home an hour later (at least it was for me). The best thing about the biopsy for me was it put to rest any doubt I may have had, and it gave us a baseline for monitoring in the future. I will likely be monitored by biopsy because I have no outward syptoms to let me know my bowel is healing. If you opt for a biopsy, make a point of visiting all your fave places and eating all your fave foods! I did, I called it the farewell tour, lol. I'm glad I had the chance to eat all that stuff one last time. Whatever you do next, you will find this board a great source of info and support!

[pixiegirl]

About the alcohol.... well wine is for sure ok and I drink vodka occasionally and don't react at all.

I have read here many times that because alcolhol is distilled there is no gluten in it. I know that Absolute just said that to someone on one of the lists, yes it grain based but because of the distillation process there is no gluten in it at all.

I also have read on a variety of lists that for some reason it seems like a lot of gluten free/Celiac people become very alcohol sensitive... I have, it seems i get tipsy faster then i use too, so now one glass of wine is my limit.

Susan

[dad]

Hello everybody! I stumbled on to this site while looking for any help I could find that would help me begin to understand this disease. While sitting here at work today I recieved a phone call from my wife stating that my 6 year old daughter was just diognosed with this disease through a blood test reading 286 (whatever that means??). So never hearing of this disease and having the internet at my fingertips here I am. I'm just so frustrated to find out my little girl has this disease. It was just 2 years ago that I was at work and my wife called me and told me to meet her at the hospital because my little girl had just been diognosed with typ-1 diabetes, so I just cant believe this too is happening to her. Well I'm sorry about the feeling sorry for myself. In all I just hope with going through this web-site I can find some help with what to expect and what I can do for her. It is still a big question mark for as to what all to avoid because reading some of the posts on this site it seems that if something gluten free is clos enough to somethig filled with glutens that you can still be infected. So this whole thing to me is very confusing. Oh well I will just keep reading and wait for her Doctors appointment. Thank You and Take Care.

[floridanative]

Oh well I will just keep reading and wait for her Doctors appointment. Thank You and Take Care.

<{POST_SNAPBACK}>

[Nevadan]

Hello everybody! I stumbled on to this site while looking for any help I could find that would help me begin to understand this disease. While sitting here at work today I recieved a phone call from my wife stating that my 6 year old daughter was just diognosed with this disease through a blood test reading 286 (whatever that means??).

......

So this whole thing to me is very confusing. Oh well I will just keep reading and wait for her Doctors appointment. Thank You and Take Care.

<{POST_SNAPBACK}>

Welcome to the board. Sorry to hear about your daughter; however, Type 1 Diabetes and celiac disease are very related genetic diseases. Without the elimination of gluten, folks with celiac disease are subject to all kinds on dire auto-immune diseases.

Speaking of genetics, you and your wife and any other children you may have should also be tested for celiac disease - symptoms or not. Read skoki_mom's previous post on this thread. She's has no symptoms, was tested because her sister was dx'ed with celiac disease and then found out she had celiac disease too. Symptoms are not always present, but the damage is occuring anyway.

You might want to read the book "Dangerous Grains" by Braly & Hoggan for a general overview of celiac disease and it's implicatons on future health.

Also another good forum re gluten sensitivity/celiac disease is at:

Open Original Shared Link

Start with the "The Gluten File", the top item on the index for lots of good info.

On the positive side, the gluten-free diet can be a very healthy diet.

George

[paw]

Dad,

I am pretty new at this too. Diabetes does often go along with Celiac Disease. You are right to worry about cross contamination of your little girl's food. If your family cooks say regular wheat pasta and drains it in a strainer and then drains special pasta for your daughter, she will have gluten in her pasta. A few wheat bread crumbs will add gluten. It only takes a tiny bit to make someone sick.

What I have been doing is reading old posts and trying to soak it all in. I have stainless steel pots and pans so I just need to give them a good scrub. If you have non-stick pans that have some scratches, you may have to get a few special new ones for your daughters gluten free food. All that is explained in the many posts I have been reading.

Find a good doctor who knows what they are doing and ask lots of questions. I think your question will get more notice in a new thread than at the end of an old one, but that is just my opinion. Good luck to your family.

[WRowland]

But there is some great news here. Performing autopsies is one of my professional duties, preparing biopsies for diagnosis is another. Beleive me the standard American diet is killing everybody. Most of what we see on a hospital morgue table is suicide by fork.

Don't focus on what you cannot eat. The gluten free diet is one of the healthiest I've ever seen. If you give it a reasonable try you will certainly avoid all of the complications, symptomatic and silent, of celiac. But you will also avoid most of the other things that are killing people in the industrialized nations.

So, cheer up. Somebody decided that you were worth saving and gave you a magic formula for long life. Give up the grains and get really, really healthy.

Find something to do with your friends that saves them too, or get new friends.

[jrom987]

WRowland - I had to reply to something you said. "Don't focus on what you cannot eat. The gluten free diet is one of the healthiest I've ever seen. If you give it a reasonable try you will certainly avoid all of the complications, symptomatic and silent, of celiac. But you will also avoid most of the other things that are killing people in the industrialized nations.

So, cheer up. Somebody decided that you were worth saving and gave you a magic formula for long life. Give up the grains and get really, really healthy."

That is a wonderful statement! It brought tears to my eyes this morning as I am having one of those emotional weeks. Thank you, especially for these words "Somebody decided that you were worth saving and gave you a magic formula for long life."

Jo Ann

[ravenwoodglass]

But there is some great news here.  Performing autopsies is one of my professional duties, preparing biopsies for diagnosis is another.  Beleive me the standard American diet is killing everybody.  Most of what we see on a hospital morgue table is suicide by fork.

Don't focus on what you cannot eat.  The gluten free diet is one of the healthiest I've ever seen.  If you give it a reasonable try you will certainly avoid all of the complications, symptomatic and silent, of celiac.  But you will also avoid most of the other things that are killing people in the industrialized nations.

So, cheer up.  Somebody decided that you were worth saving and gave you a magic formula for long life.  Give up the grains and get really, really healthy.

Find something to do with your friends that saves them too, or get new friends.

<{POST_SNAPBACK}>

Thank you for this post, I hope you also visit other boards with this valuable info. You are certainly in a position to be listened to. I send my PT cards and the occasional flowers for being the one who cared enough to nag me to see an allergist, no doctor ever mentioned celiac in 15 years of misery.