Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Guest DanceswithWolves

So, What's The Worst Complication?

Rate this topic

Recommended Posts

Guest DanceswithWolves

So, I'm just wondering what will be the end result if I keep suffering from too much gluten? Can the villi get damaged beyond repair? I guess eventually your body would not receive any of the nutrients and protein from the foods you eat.

Now, according to my doctors and my results I do not have celiac disease...but I believe I did not have enough gluten in my system before the tests. If I am only gluten-intolerant and do not have celiac disease, can I drop dead from this or will I just continue to be skinney?

I had a pizza at work and I sware within an hour after eating it my nose started to run and my eyes teared up. I bet ya it's the dough. My symptoms only last for about ten minutes and then they go away. Also, when I got home..my hands were freezing.

Can IBS cause these symptoms?

I'm suppossed to get a call from an allergist to schedule an appt. for a visit.

If I only have IBS...can I get worse from that?

After the allergist, I'm going gluten-free, but I wonder if it's possible to put any weight on? :huh:

Share this post


Link to post
Share on other sites

Well with celiac if you do not follow the diet then your chance for cancer goes up 40-100 times and you put yourself at high risk for other life threatening and disabling things. It can effect any part of the body. Also, it takes an average of 10 years off your life if not treated.

In rare cases but have been seen, the damage is so bad at the time a person goes gluten free that the villi will not be able to heal and that is "refractory celiac" Again, that is very rare but it does happen.

If you are gluten intolerant you will still be damaging your body but it will damage it in different ways...the symptoms you feel are your bodys way of trying to tell you something.

I would recommend a gene test because most celiacs have either the DQ2 or DQ8 gene....although a very small percentage have the DQ1 gene and there are possibly other celiac genes that have not been identified.

What have you got to lose by trying out the diet? You may feel so much better and put on some weight.

If you weren't consuming enough gluten prior to testing then your tests are invalid. How you respond to the diet is the big test...but you need to be 100% gluten free if you expect to see a difference.

Celiac is commonly misdiagnosed for things such as IBS. IBS means a doctor can't figure out what it was so he/she prescribes a drug...that's not going to accomplish anything.

I think it's possible for you to get better and gain weight. I would get testing for other intolerances and allergies too because gluten may not be the only thing causing you a problem.

Share this post


Link to post
Share on other sites

At first, some people might not get too worried about the possibility of it taking 10 years off your life. Because it's the last 10. (Ha Ha. Old joke...)

My dad died when he was 61. When you're in your 20's, 30's or even 40's, that doesn't seem too bad. But let me tell you about when he died. Not how old he was. But what was happening in his life.

After struggling through depression, stomach problems, brain fog and exhaustion for most of his life, after going through the death of his wife from breast cancer, after witnessing his only child escape an abusive relationship, after finding and marrying his second wife who became the best friend he ever could have wished for, after seeing his daughter marry and have two beautiful children, after finding out he had ADD and coming out of some of the brain fog he had been struggling with for years, after having the light turned on in his brain to such a point where he had notebooks upon notebooks of brilliant inventions, after planning a beautiful retirement where he and his wife could spend their days camping and fishing, and traveling and just being together doing all the things they loved, he was diagnosed with stomach cancer. Six months later he was dead.

My father died the day after Christmas last year. Actually it wasn't the day after Christmas. It was 12:03 am, December 26th. He hung on until after Christmas was over so that we wouldn't have to say for the rest of our lives that he died on Christmas.

My daughter was two and a half. My son was 11 months old.

My dad wasn't perfect. He wasn't terribly healthy. But he did everything he could to beat the cancer. He did everything he could to stay. And I've never been more proud.

You know, at this point, I have no idea if he had celiac disease, because I don't know if I have it. But it doesn't really matter for the point I'm wanting to make.

Someday, if you haven't already, you're going to find the woman who will be your wife, and you'll have kids and grandkids. And in the end you'll want to live for THEM. To see them do things and experience things, and give advice and support to them.

Someday, you will look back on all of this fighting with doctors, and being unsure, and feeling sick and trying to figure it all out and you will be glad for all of it, because no matter what it ends up being, you're doing all you can to discover your path to better health so that you know when the time comes that you did all you could to be as healthy as you could be so that you could stay here in this life as long as possible.

Because, for the world you may be nobody, but for somebody you will be the world.

Nancy

Share this post


Link to post
Share on other sites

What an amazing thing to write, Nancy.

Stephanie

Share this post


Link to post
Share on other sites
Guest DanceswithWolves

I definitely have it planned to see an allergist.

My mother told me that when I was born my ear canal was blocked due to fluid. She was told that I had allergies and my bedroom and crib had to washed down every day. The doctors never specified what I was allergic to but I had that fluid drained from my ear.

God, I hate this. I know there are people out there far worse than me...but I am always "stuffed up" and I have fatigue all the time. No wonder I don't date.

Share this post


Link to post
Share on other sites

Yes, what a nice thing to write, Nancy. If it weren't for the God-awful symptoms, I wonder what the point is too sometimes. Life's hard, no matter your condition, and with celiac disease and everything else, some days I'd rather not deal with it. Your post was inspirational. I am also sorry to hear about your father. I wish your family a comforting and happy holiday in his absence.

Share this post


Link to post
Share on other sites

My prayers are with you Nancy--the holiday is approaching and I know it will be a rough one--bless you and your family.

Now, DancesWithWolves--it doesnt matter if you are gluten sensitive, gluten intolerant, or celiac--the end result is the same--you must go gluten free. I do feel that if a person finds out they are gluten insensitive and do nothing about it, then eventually they will be celiac. Symptoms never get better without being gluten free. You cant give up most either--you have to give up all gluten. This isn't a halfway disease. Its not a diet--its a lifestyle. Our villi are really remarkable--they can be flattened but will come back with gluten free. Malabsorption problems may last forever and I feel that all celiacs should take vitamins, but if you dont take care of you, no one will. Please join us on this celiac rollercoaster. Deb

Share this post


Link to post
Share on other sites

DanceswithWolves,

I was diagnosed 7 months ago. My mother is 55 years old. She was diagnosed with lupus about 15 years ago. She has lost her hair, her hearing, has cataracts, has 1/2 a stomach left, has vomiting and D every single day, doesn't eat, she has sores all over her body (?DH), she weighs 37 kgs (81.4 pounds) at 5 ft 4.

Now let me assure you - she looks like a zombie, the brain fog is unbelievable. Her quality of life is a joke.

She was never tested for Celiac but looking at all the above, I have no doubt she has it. Lupus is an auto-immune disease and can be caused by untreated Celiac.

My sister is now showing symptoms too. All the symptoms she had prior to actually getting lupus are the same symptoms I had 7 months ago.

So when they told me I had a problem with gluten, I looked at my mother, and made my choice. There is no way I want to end up like her.

So can you die from it - yes you can die from the complications of continuing to eat gluten.

Nancy, what a touching message and so true. God bless you and your family.

Yvonne

Share this post


Link to post
Share on other sites

Why don't you try getting the gene test like Kati suggested. My husband has been sick for months and we kept getting the run around from doctors even after he had a positive biopsy. They felt it couldn't be right because he had negative bloodwork. He went on the diet anyway and felt results in a couple of weeks. He is not by any means better but he can feel small improvements each week. He ended up doing the Entrolabs test just so we would know if he had the gene or not since the doctors weren't satisfied with the biopsy being enough, and the diet working (and now if he gets something w/ gluten he's sick w/in 15 minutes). He also did the stool test part and ended up having the Celiac gene DQ2 and a gluten sensitive gene DQ1. He also had positive antigliadin IgA and was Casein intolerant also. Shane followed the diet before this test but after getting the results he new what he had to do to be healthy even if the doctors weren't convinced. (He has lost 53 pds. since July) If we sat back waiting on his doctors to tell him what to eat he'd be in worse shape. You should at least try the diet if you know you are getting sick from eating things with gluten you don't have anything to loose except feeling sick.

Good Luck hope you get some answers soon.

Jennifer

Share this post


Link to post
Share on other sites
I had a pizza at work and I sware within an hour after eating it my nose started to run and my eyes teared up. I bet ya it's the dough.

<{POST_SNAPBACK}>

Or it could be the dairy (cheese). Guessing isn't going to do you much good. You could try an elimination diet.

And yes, I can say from personal experience, once you eliminate the foods that are bothering you and heal the gut, you will be able to gain weight.

Share this post


Link to post
Share on other sites
Guest DanceswithWolves

Or it could be the dairy (cheese). Guessing isn't going to do you much good. You could try an elimination diet.

I guess I can try an elimination diet again. I am so frustrated in the morning because I haven't a clue on what to eat in the morning. I am so hungry in the morning, and simply eating fruit or gluten-free pancakes will not cut it.

Any suggestions?

Share this post


Link to post
Share on other sites

Try protein in the morning. I either eat a turkey or regular sausage patty by Wellshire farms and some fruit. Protein does a better job of keeping your tummy full than refined carbs.

Share this post


Link to post
Share on other sites

Some breakfast suggestions might be,

Hard boil some eggs and keep them handy.

Bacon or ham and eggs, Hormel is Gluten free.

Carnation Instant Breakfast, Avoid the chocolate malt but the regular chocolate is fine.

A fruit smoothie.

Hot buckwheat or rice cereal. Hot Quiona cereal.

A banana dipped in Nestle chocolate syrup and rolled in crushed nuts

A baggie with raisens or currants (sun maid are gluten-free), mixed nuts, Nestle Peanut Butter and/or Chocolate chips and some gluten free pretzels.

Omelet with veggies, Hormel pepperoni, and cheese

I Think there may also be a specific post with lunch suggestions, many might work for breakfast too. I'm glad to hear you are going to give the diet a try. I know others will be on to give you more suggestions. Best Wishes

Share this post


Link to post
Share on other sites
I guess I can try an elimination diet again. I am so frustrated in the morning because I haven't a clue on what to eat in the morning. I am so hungry in the morning, and simply eating fruit or gluten-free pancakes will not cut it.

Any suggestions?

<{POST_SNAPBACK}>

There are a lot of things you can eat. I had to get past the idea of "breakfast foods." I often have some chicken salad for breakfast. I always have some source of protein. If you're eating nothing but carbs - particularly sugary carbs - you are going to be starving.

In addition to the other suggestions... how 'bout a breakfast burrito with gluten-free wrap? gluten-free cereal with rice milk and a side of sausage or bacon?

Share this post


Link to post
Share on other sites

Nancy - I'm so sorry about your Father but I'm thankful you shared his story with us. It helps to put things into perspective. At this point, I'm hoping that if all I have is celiac disease I will grateful it's not something worse.

Have a lovely holiday season. :wub:

Share this post


Link to post
Share on other sites

Stop thinking so much in the box about breakfast, you know what works well? Leftovers from previous nights dinners. :D Just cause its breakfast does not mean you HAVE to eat eggs, bacon, and ceral. Stake is good too :D

Share this post


Link to post
Share on other sites
At first, some people might not get too worried about the possibility of it taking 10 years off your life.  Because it's the last 10.  (Ha Ha.  Old joke...) 

My dad died when he was 61.  When you're in your 20's, 30's or even 40's, that doesn't seem too bad.  But let me tell you about when he died.  Not how old he was.  But what was happening in his life. 

After struggling through depression, stomach problems, brain fog and exhaustion for most of his life, after going through the death of his wife from breast cancer, after witnessing his only child escape an abusive relationship, after finding and marrying his second wife who became the best friend he ever could have wished for, after seeing his daughter marry and have two beautiful children, after finding out he had ADD and coming out of some of the brain fog he had been struggling with for years, after having the light turned on in his brain to such a point where he had notebooks upon notebooks of brilliant inventions, after planning a beautiful retirement where he and his wife could spend their days camping and fishing, and traveling and just being together doing all the things they loved, he was diagnosed with stomach cancer.  Six months later he was dead. 

My father died the day after Christmas last year.  Actually it wasn't the day after Christmas.  It was 12:03 am, December 26th.  He hung on until after Christmas was over so that we wouldn't have to say for the rest of our lives that he died on Christmas. 

My daughter was two and a half.  My son was 11 months old. 

My dad wasn't perfect.  He wasn't terribly healthy.  But he did everything he could to beat the cancer.  He did everything he could to stay.  And I've never been more proud. 

You know, at this point, I have no idea if he had celiac disease, because I don't know if I have it.  But it doesn't really matter for the point I'm wanting to make. 

Someday, if you haven't already, you're going to find the woman who will be your wife, and you'll have kids and grandkids.  And in the end you'll want to live for THEM.  To see them do things and experience things, and give advice and support to them. 

Someday, you will look back on all of this fighting with doctors, and being unsure, and feeling sick and trying to figure it all out and you will be glad for all of it, because no matter what it ends up being, you're doing all you can to discover your path to better health so that you know when the time comes that you did all you could to be as healthy as you could be so that you could stay here in this life as long as possible. 

Because, for the world you may be nobody, but for somebody you will be the world. 

Nancy

<{POST_SNAPBACK}>

I just want to say WHAT A BEAUTIFUL STORY! Well, maybe not story, but everything you said is so true and meaningful!!!!!!!!

Also, I noticed in your signiture you said you've had problems since mono. THAT'S VERY INTERESTING because I have even asked my doctors if all of this has anything to do with mono because that's when mine got A LOT worse as well, and when I have a total flare up, THAT'S WHAT I FEEL LIKE I HAVE AGAIN, MONO! So, I just wanted to add that.

Also, what exactly do your blood tests mean? Were they positive?

-Danielle

Share this post


Link to post
Share on other sites

Nancy- thanks also for sharing. neither of my parents has Celiac...but my dad's family is most suspicous as the carrier (not that both couldn't be...) ...his grandmother dying of intestinal cancer. i only learned that recently. my dad said he just remembered how painful of a death she had... he has plenty of other digestive issues, but no Celiac.

Dances- how about a peanut butter smoothie for breakfast? peanut butter is one of my best belly fillers. i agree with vydor too...breakfast can be just about anything. how about getting some kinnikinnick gluten-free english muffins than making egg/cheese/sausage breakfast sandwiches out of them? the muffins are big, so it would be a hearty sandwich. can you keep snacks with you? i eat an apple and peanut butter as my morning snack. people at work make fun of me b/c i eat 3 x while at work, and they all eat only once :)

Share this post


Link to post
Share on other sites

I eat scrambled eggs and drink low acid OJ every morning. Fills me up more than gluten free waffles or cereal ever did. Now that I'm used to doing the eggs, breakfast isn't a problem. I know what you mean, though, I used to skip it after I went gluten-free because I had no idea what to eat!

Share this post


Link to post
Share on other sites
So, I'm just wondering what will be the end result if I keep suffering from too much gluten? Can the villi get damaged beyond repair? If I am only gluten-intolerant and do not have celiac disease, can I drop dead from this or will I just continue to be skinney?

If you have celiac disease and continue to eat gluten, the damage done to the intestine would be gradual and would eventually lead to complications later on in life. The complications that I've read about include, intestinal cancer, osteoporosis, seizures, brain complaications, infertility, various vitamin deficieny disorders, and refractory celiac disease. If you get refractory celiac disease, the damage done to the villi in the intestine is not reversible and your chances for getting intestinal cancer increase dramatically. However, this form of celiac disease is very rare. So, don't worry :)

Can IBS cause these symptoms?

Yes, IBS can cause some of the celiac disease symptoms. I have been diagnosed with IBS induced by celiac disease, this means that having celiac disease caused my intestines to go crazy! and all food that I ate made me sick. This eventually went away after I was on the gluten free diet for over 1 year. I believe that there is such a thing as IBS, but I think it is caused or triggered by something, like celiac disease in my case. I also think the IBS symptoms will go away once the "other" problem is fixed.

After the allergist, I'm going gluten-free, but I wonder if it's possible to put any weight on?
You can definatley put weight on on the gluten-free diet! You can eat foods that are very high in protein like red meat, eggs, fish, chicken ect. I have a really good chili recipe that would be great for gaining weight if you are interested.

Share this post


Link to post
Share on other sites
Guest CD_Surviver
I have a really good chili recipe that would be great for gaining weight if you are interested.

<{POST_SNAPBACK}>

I would like this recipe i love chili but it is hard to find it gluten free. :D

Lauren

Share this post


Link to post
Share on other sites
I would like this recipe i love chili but it is hard to find it gluten free.

Sure! :D

Chili

2 cans Heinz beans in tomato sauce

2 cans Heinz Chili style Kidney beans, rinse beans before putting them in.

1 can Hunts-Wesson tomato sauce

1 large can tomatoes

1 small box Imagine Tomato soup (if you can’t find this, just add extra tomato sauce)

Extra lean hamburger

Veggies (e.g green/red pepper, green/yellow onion, corn, garlic)

2-4 Tablespoons Chili powder, McCormick or Club house

Cook hamburger and veggies together until done. I recommend coking the meat for awhile first and then adding the veggies. Add everything in a big pot and heat.

Share this post


Link to post
Share on other sites
Stop thinking so much in the box...

<{POST_SNAPBACK}>

That is the whole key to this diet and lifestyle. There are all kinds of great things to eat if are willing to stick your head out of the box and look.

Things like cancer are the least of my concerns and not why I adopted the gluten-free lifestyle. I spent 36 years being a brain fogged zombie. There is just no way I ever want to experience that ever again. I do not fear death or hell because I have experienced brain fog. A life of brain fog is a fate worse than death and the man downstairs could never come up with something as awful as brain fog.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      0  
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • May 04, 2019 Until May 05, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
×
×
  • Create New...