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Hi

I am newly diagnosed with celiac. My endoscopy results show extensive damage. My doctor sent me home saying I need to be on gluten free diet and that I am going to face complications such as cancer and lupus if I don't smarten up. I came home crying not knowing what the hell was going on .

From what I have researched so far my self ( and thanks to information on this forum) that the cause of my chronic fatigue, low mood and severe anemia is my celiac.

From what I can precieve from how my doctor told me, I am ver scared of this prognosis. I don't know what to do and where to start.

I am feeling really down. I did read the newbie information (which I found really helpfull) but I don't k ow if I will be able to follow strict gluten free diet.

My doctor even webt on to say that I might not be able to have children let alone them being healthy. My husband and I have just bought a house and he is already planning the baby room. I don't know how to tell him what I wad told.

I will really appreciate some positive words because all I fell like foing right now is to roll into a ball and not get out of my bed ; (

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Hi, and welcome aboard.

I was diagnosed in 2000 with extensive damage to my villi. I had just turned 46 at the time, and was very ill.

Thirteen years later, I have healed. There are some things that can't be undone, such as poor tooth enamel, but like most of us, a near complete recovery is possible by strictly following the diet.

Fertility problems in untreated celiac disease are common, but once you have healed the chances of a successful pregnancy are no different than those without celiac disease. There is a higher than average risk that your child will develop celiac disease, as there is a genetic factor. But not everyone with the genes develops the disease.

After years of getting progressively sicker, my diagnosis was good news. I had an answer and could begin to recover.

If you have damage as described, expect that the healing process will take time. Factors include the extent of the damage, and age--older people take longer to heal. I felt better quickly, but noticeable symptoms continued for 3-4 months, with full recovery taking much longer.

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Welcome  :)

 

You can do this!!!

 

At first it can be a bit overwhelming, but you came to the right place.  I think the sooner you talk about this with your husband the better.  Will it help to write things down before talking to him?  

 

Celiac disease can cause infertility.  In fact a great book you may want to check out is Real Life with Celiac Disease by Melinda Dennis.  It talks about that if a women has unexplained fertility, she should automatically be tested for celiac, but unfortunately not all fertility specialists know that.  Some people could have saved thousands of dollars on IVF if only they would have been tested for celiac and cut gluten out of their diet.  

 

Is it overwhelming at first...yes, but it's nothing you can't handle.  Stick to naturally gluten free foods like fruits and veggies and lean meats.  Others will be along to offer suggestions, but just know you're not alone  :)

 

 

 

 

Hi

I am newly diagnosed with celiac. My endoscopy results show extensive damage. My doctor sent me home saying I need to be on gluten free diet and that I am going to face complications such as cancer and lupus if I don't smarten up. I came home crying not knowing what the hell was going on .

From what I have researched so far my self ( and thanks to information on this forum) that the cause of my chronic fatigue, low mood and severe anemia is my celiac.

From what I can precieve from how my doctor told me, I am ver scared of this prognosis. I don't know what to do and where to start.

I am feeling really down. I did read the newbie information (which I found really helpfull) but I don't k ow if I will be able to follow strict gluten free diet.

My doctor even webt on to say that I might not be able to have children let alone them being healthy. My husband and I have just bought a house and he is already planning the baby room. I don't know how to tell him what I wad told.
I will really appreciate some positive words because all I fell like foing right now is to roll into a ball and not get out of my bed ; (

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You have come to the right place! What your doctor told you is true - up to a point. You DO run the risk of all sorts of nasty "complications" like cancer and lupus and other autoimmune diseases IF you don't stick to a gluten-free diet. And you MAY suffer fertility problems and miscarriages IF you don't stick to the gluten-free diet.

 

But the good news is, if you DO stick to the gluten-free diet, chances are you won't develop other problems, and chances are you can pump out as many children as you want. :o  :lol:

 

I'm glad you read the newbie thread. It's a great place to start. You truly do need to be careful about cross-contamination. It can all seem overwhelming at first, but honestly, there will come a time when you won't even think about it. You will likely go through a period of withdrawal -  and it is a very real, physical withdrawal. You may get headaches and mood swings and constant hunger for a couple of weeks. Then it will settle down.

 

You may also have a few meltdowns at the grocery store. That's when you come here and cry on our shoulders. Between all of us here, we have MILES of shoulders and we're more than glad to comfort you. But there really are SO many foods that are gluten-free naturally - meats, fresh veggies, fresh fruit, rice, potatoes, sweet potatoes, even most potato chips and ice creams. And even though it's best not to go hog wild buying gluten-free substitutes at first, when it comes time for bread, there are some really good ones out there such as Udi's and CANYON BAKEHOUSE. Yeah, they're expensive, but that'll keep you from overdoing it - they are really fattening and have hardly any nutrition. But they make a nice treat when you just feel like having a sandwich.

 

So please, DO go COMPLETELY gluten-free, and please, lean on us here. We're all in the same boat, and those of us who have been at it for a while are living better lives than we ever have. We eat healthier, we feel better, and we are happier, with more energy and MUCH more positive outlooks than we had before.

 

You're going to be fine. Better than fine. And you will live a normal life with children and whatever else you want because you will have the good health with which to pursue these things. :)

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(Hugs) Welcome to the forum.

 

Your doctor was incredibly insensitive. It sounds like he was trying scare tactics on you so you would be more likely to go gluten-free.  It is true that continuing to eat gluten can cause inflammation that can trigger other autoimmune disorders but it is not a guarantee by a long shot. Same thing with infertility; it can cause problems but it doesn't happen in the majority of the cases - I had 3 kids in 5 years while living with untreated hypothyroidism and celiac disease... can't say I felt well doing it but I had no problems at all.   ;)

 

To better your health, you might want to get your nutrient levels tested. celiacs are often low in potassium, magnesium, calcium, A, B's, D, ferritin, iron, zinc, and copper. Thyroid problems are common so you might ask for a TSH free T4 and free T3 ttests, and TPO Ab. Get copies of all your labs so you can keep track of it.

 

Give yourself time to feel better too. It can takes months to years to heal up and feel well again. Patience is key with this disease.  Hang in there.

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Welcome to the Forum Hun,

 

It's a new day so roll yourself out of bed and start your new adventure of great health.  I'm going to assume that your Hubs is going gluten free with you, it will make it easier.  Read through the forum here.  Start getting your kitchen in shape.  Plan on eating in while you get the hang of eating gluten free.  Restaurants are cross-contamination havens and you need to heal right now.  This site has plenty of meal ideas so delve in.  It is wonderful that you have found out you have Celiac now and not go through countless years of poor health like so many of us here have.  And don't worry, you will be having babies in no time!! 

 

All the best.

 

Colleen

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Hi lvlearning

 

! I had 30 years of untreated symptoms.  During that time I had 5 children. Now, I am gluten free, I am feeling better and my nutrient levels have gone up.   One must follow 100% gluten free diet, but villi damage is reversible.  My Functional Medicine nurse says so, and besides I have proved it.

 

  I agree that checking your nutrient levels would be good.  When you know which nutrients are low,  you can make sure to get plenty of the by using quality supplements. You will need them to help you heal and nourish.

 

I hope to hear soon your improvements as you go gluten free.  Get well soon,

 

D

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Welcome to the Forum! This is by far the best resource I know. We're all here for you.

All you really need to tell your husband is that you have to be 100% gluten free to reverse the damage already done and stay healthy. That way you can avoid all the possible future complications, and just feel better in general. If you just moved into a new place, what better time to go through the kitchen and get rid of whatever you can't eat, as well as decide what dishes and such need to be replaced. If your husband isn't willing to go gluten-free with you (ask him to give it a shot. you never know), then designate a part of the counter for gluteny things and demand he keep it spotless. Crumbs are bad! (also, he must brush his teeth before kisses).

 

Yep, it's tough at first, but once you start feeling better you'll know it's worth it. And it might seem impossible to go 100% gluten-free, and yes, even the strictest of us run into problems on occasion, but the harder you try at the beginning, the faster you'll heal and you'll be a pro in no time.

 

Once you do have kids, you'll have all the energy you need for them. They have a higher risk of developing celiac themselves, but if they also eat gluten-free or are diagnosed at an early age, that avoids the health problems.

 

You can do this!! We're here for you.

Happy healing!

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Sounds like the doctor wanted to make sure you know that Celiac is serious and you really need to follow the diet.  Most of these risks go away if you are gluten-free.  The anemia, fatigue, etc should go away after a while gluten-free.  Once you are healed, your intestines will be able to absorb the iron, vit D, etc that you need and that will improve the anemia (which is one cause of the tiredness), moods, fertility,  etc.

 

 

http://www.cureceliacdisease.org/archives/faq/given-that-celiac-disease-is-associated-with-infertility-what-can-a-woman-with-celiac-disease-do-to-help-her-get-pregnant

 

http://www.cureceliacdisease.org/archives/faq/does-the-risk-of-intestinal-lymphoma-decrease-once-diagnosed-with-celiac-disease-and-on-a-gluten-free-diet-or-are-you-still-at-a-greater-risk

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Thank you so much everyone for your positive words, encouragement and all the information. I really panicked after hearing the black and white consequeses from my doctor. But your words give me a lot of hope.

I guess I needed cry and get this out of my system. I was able to talk to my hubby and we are both going gluten free.

And yes you guys are right. I need to look at this as a blessing in disguise because now I have a chance to decrease the chance of preventing all the complications.

This is going to be really hard but I feel I am at the right place where I can get the guidance from all of you.

I have packed up all the gluteny food in my house and will drop it off at the food bank. I am going to try my best to start with whole foods and limit the processed foods as much as possible.

This is a huge learning curve but I need to do this like you all did. I just hope I stay strong through this.

I am really thankfull to all of you guys and the information that is available here for people with celiac. Hopefully you guys will continue to help me as I move forward.

Thank you!

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Ohh sweetie!! You will stay strong!! It will be a learning curve! But believe me!! If you get accidentally Glutened you will know it and never want to go there again!! You can do it!! Your hubbs is on your side! So there is the both of you!! You can do it!! It isn't as hard as you think it is!! good luck!! Look for fresh foods not processed!! :) Good luck sweetie!! 

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Thanks w8in4dave for your kind words!

I am now gluten free for few days. I have stopped processed sugar (I do use smal amounts of honey), caffiene, dairy, corn, and soy (just to be caucious if I am intolerant to them. Will try to introduce these slowly after 2-3 months of healing) . But I have been experiencing awefull migrain headaches, and I feel really tired all the time. I am having intense mood swings that I am scared to be around people. I did not tjink the withdrawal symptoms could be so strong.

I am on a multivitamin and eat lots of salads and fruuts and legumes. But I still have some bloating. My other GI symptons have completely disappeared. Not sure if I should give up legumes but theyvare a realy good source of protein for me

Did anyone else experience similar symptons? How long these last? Is there a natural way to get rid of the headaches? I have tried amber neclace and lots of water but nothing helped. And I do mot want to take any NSAIDS?

Any comments or suggestions are welcome.

Thank you.

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You have come to the right place! What your doctor told you is true - up to a point. You DO run the risk of all sorts of nasty "complications" like cancer and lupus and other autoimmune diseases IF you don't stick to a gluten-free diet. And you MAY suffer fertility problems and miscarriages IF you don't stick to the gluten-free diet.

 

But the good news is, if you DO stick to the gluten-free diet, chances are you won't develop other problems, and chances are you can pump out as many children as you want. :o  :lol:

 

I'm glad you read the newbie thread. It's a great place to start. You truly do need to be careful about cross-contamination. It can all seem overwhelming at first, but honestly, there will come a time when you won't even think about it. You will likely go through a period of withdrawal -  and it is a very real, physical withdrawal. You may get headaches and mood swings and constant hunger for a couple of weeks. Then it will settle down.

 

You may also have a few meltdowns at the grocery store. That's when you come here and cry on our shoulders. Between all of us here, we have MILES of shoulders and we're more than glad to comfort you. But there really are SO many foods that are gluten-free naturally - meats, fresh veggies, fresh fruit, rice, potatoes, sweet potatoes, even most potato chips and ice creams. And even though it's best not to go hog wild buying gluten-free substitutes at first, when it comes time for bread, there are some really good ones out there such as Udi's and CANYON BAKEHOUSE. Yeah, they're expensive, but that'll keep you from overdoing it - they are really fattening and have hardly any nutrition. But they make a nice treat when you just feel like having a sandwich.

 

So please, DO go COMPLETELY gluten-free, and please, lean on us here. We're all in the same boat, and those of us who have been at it for a while are living better lives than we ever have. We eat healthier, we feel better, and we are happier, with more energy and MUCH more positive outlooks than we had before.

 

You're going to be fine. Better than fine. And you will live a normal life with children and whatever else you want because you will have the good health with which to pursue these things. :)

Hello my name is Anne

I too am new to this whole life of Gluten free. I wanted to say something that I have found to be completely true. Going to the grocery store ends up becoming a mental breakdown for me. I unfortunately have NOT turned my house over into gluten free and it's become so challenging that I have suffered nutrition. My levels went from 98 to a 8 in 6 weeks. My doctor still says this is way to high and the reason I am so tired is because of this. I have heard my levels should be below a 4 so I am continually trying. I basically was told that I had without a doubt celiac and to look it up and don't eat gluten. Then I was sent on my way. It's been since the end of July and I am still trying to figure this whole thing out. I commented on your post specially because of the grocery store comment. Today specially I went to the store and walked around on circles to finally putting some udis bread in my cart and left. I actually cried from frustration. I just resist the change and sometimes feel as if it isn't fair. I however know this is being stupidly selfish and I can conquer this just like I conquered breaking my neck and the possibilities of never walking again. I wanted to thank I for your reply to the poster. It not onky helped her. But it helped me too. Thanks

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I don't know what test that was, but to go that dramatically down in 6 weeks if it was a TTG test, is AMAZING! Here's a little secret your doctor apparently doesn't know. antibodies levels can keep rising for a while after you eliminate gluten.

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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