I'm waiting to get a biopsy, have questions about cancers.

[Nino]

Hello Everyone!

   I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done.

   The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious.

    Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good.

    She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.

[ravenwoodglass]

Welcome. The biopsies they are taking are going to be of your small intestine lining. Having celiac destroys your villi. Those are microscopic hair like things that help you absorb nutrients. They grow back once you have been gluten free for a bit. While celiac can make us have a stronger tendency to certain cancers and other autoimmune issues that doesn't happen to everyone.  I was undiagnosed for over 40 years and never developed any cancers, thankfully.  From what I have read after 5 years or so on the diet your chances of developing a celiac related cancer go down to about that of folks that don't have celiac.

Do read the Newbie 101 thread at the top of the Coping section. It has a lot of info for you on what you need to do to keep yourself safe.

Do keep eating gluten until all celiac related testing is over. If you have positive blood work chances are you do have celiac. In some instances the biopsies can come back a false negative so do go on the diet strictly after celiac related testing is done for at least 6 months then recheck to see if your anitibodies have gone down.

I hope you heal quickly and feel free to ask any questions needed. You have found a great place for info and support.

[Ennis-TX]

5 hours ago, Nino said:

Hello Everyone!

   I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done.

   The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious.

    Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good.

    She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.

It is quite rare and those that do get it are most often much later in their lives. If you had lymphoma you would be having really bad night sweats, swollen glands, etc. Pretty sure it would have shone up in screenings already also. Your bigger concerns would be with further damage to your intestines, and other diseases developing. Mine was ignored til my 20s and I had developed Ulcerative colitis, and a TON of food intolerance and allergies issues....like allergies to corn, whey, lactose intolerance, soy, peanuts, and various other intolerance issues. I even get rolling ones that come and go. It effected my immunue system where it would attack my brain and neverous system when exposed causing brain damage and nerve damage (this is a rare reaction called gluten ataxia). I thought I was going insane and running a bucket list as my mind was breaking. Most of the damage and insanity stopped on a gluten free diet for the past 5 years with many intolerance issues going away.

I hear you on the lymphoma thing, I was having bad night sweats, fevers, and all kinds of other issues which seemd to have been related to either my UC or a infection I got.

Since you are new I might suggest looking at the newbie 101 section....there is a HUGE learning curve to this disease as gluten residue smaller then germs can set you off....and you can not kill gluten with bleach as it is a protein like blood.  SO there is also a clean out phase of cleaning out your house/kitchen to make it safe, and a whole phase of finding safe foods/ingredients you trust.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

[Nino]

6 hours ago, Ennis_TX said:

It is quite rare and those that do get it are most often much later in their lives. If you had lymphoma you would be having really bad night sweats, swollen glands, etc. Pretty sure it would have shone up in screenings already also. Your bigger concerns would be with further damage to your intestines, and other diseases developing. Mine was ignored til my 20s and I had developed Ulcerative colitis, and a TON of food intolerance and allergies issues....like allergies to corn, whey, lactose intolerance, soy, peanuts, and various other intolerance issues. I even get rolling ones that come and go. It effected my immunue system where it would attack my brain and neverous system when exposed causing brain damage and nerve damage (this is a rare reaction called gluten ataxia). I thought I was going insane and running a bucket list as my mind was breaking. Most of the damage and insanity stopped on a gluten free diet for the past 5 years with many intolerance issues going away.

I hear you on the lymphoma thing, I was having bad night sweats, fevers, and all kinds of other issues which seemd to have been related to either my UC or a infection I got.

Since you are new I might suggest looking at the newbie 101 section....there is a HUGE learning curve to this disease as gluten residue smaller then germs can set you off....and you can not kill gluten with bleach as it is a protein like blood.  SO there is also a clean out phase of cleaning out your house/kitchen to make it safe, and a whole phase of finding safe foods/ingredients you trust.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

Thank you for replying!

I'm sorry you didn't get diagnosed until later on, going through all of that must have been terrible.  I'm lucky that it's getting caught so early for me, at least I think it is. I haven't had health issues in these past years, never even getting sick. The only other thing was getting my tonsils removed when I was young (they were incredibly scarred) and was fine after that.

Then in 2016 I had my gallbladder problems around my 19th birthday (in April), had my gallbladder removed in November of that year. I was fine afterwards! Just some occasional abdominal pain and weight loss. My friend also had her gallbladder removed and she too lost weight, so I assumed it was normal. The abdominal pain was thought to be IBS at the worst. Learning I have Celiac Disease is a big surprise, but it also explains quite a bit.

I have been reading up on Celiac Disease and I'm glad I've found this forum. I didn't know that you couldn't kill gluten with bleach, so thanks for the heads up!

I don't want to cause further damage to my body and even if it is hard, I'd like to stop taking gluten now. However, I know it's needed to keep taking it until I get my biopsy done. I don't like the thought of putting more and more poison into my system.

[Victoria1234]

Your doc tells you that you have celiac and then in the same breath tells you it causes cancer? Omg! Really sorry your doc has a really poor method of conveying information. 

[Nino]

1 hour ago, Victoria1234 said:

Your doc tells you that you have celiac and then in the same breath tells you it causes cancer? Omg! Really sorry your doc has a really poor method of conveying information. 

Yeah she did! She also made it out to be that it wasn't as bad as IBS. She said my symptoms would go away if I stopped having gluten, but with IBS I'd have it for life. She really did not convey it very well, I miss my old doctor already.

[Ennis-TX]

2 hours ago, Nino said:

Yeah she did! She also made it out to be that it wasn't as bad as IBS. She said my symptoms would go away if I stopped having gluten, but with IBS I'd have it for life. She really did not convey it very well, I miss my old doctor already.

While the symtoms will go away on a gluten free diet....the disease is life time no gluten and once you clean out you become more sensitive to it. SO while you finishing off testing you might as well enjoy what you can of your family gluten foods cause soon you will have to dump them for life. >.<  God I miss monkey bread, and a good ole monte cristo (I found how to make the monte gluten-free...but a $15-20 3 layer deep fried gluten free sandwich is no longer appetizing at that price) >.< I perfected a lot of recreations for cravings and become a gluten free chef and started a bakery because of this disease lol. I think the whole cancer thing was to scare you it is serious.....and it can cause that. But I think it was a shock and awe tactic to get you to change your diet and not blow it off.....we do the same thing on the forums to scare those people that try to blow off cheating. It is best for you to assume you will get it if you do not stop gluten that way you stay on the wagon.

[Nino]

8 minutes ago, Ennis_TX said:

While the symtoms will go away on a gluten free diet....the disease is life time no gluten and once you clean out you become more sensitive to it. SO while you finishing off testing you might as well enjoy what you can of your family gluten foods cause soon you will have to dump them for life. >.<  God I miss monkey bread, and a good ole monte cristo (I found how to make the monte gluten-free...but a $15-20 3 layer deep fried gluten free sandwich is no longer appetizing at that price) >.< I perfected a lot of recreations for cravings and become a gluten free chef and started a bakery because of this disease lol. I think the whole cancer thing was to scare you it is serious.....and it can cause that. But I think it was a shock and awe tactic to get you to change your diet and not blow it off.....we do the same thing on the forums to scare those people that try to blow off cheating. It is best for you to assume you will get it if you do not stop gluten that way you stay on the wagon.

That's amazing that you started a gluten-free bakery! I have one by my house and walk my dog by it everyday. I know the disease is serious, and would get off gluten now if I could! I've never had much of a sweet tooth, but most of my diet has been gluten centered. That will be a big and tough change. I worry about getting the proper nutrients after quitting it. I hope I'll be able to see a dietician who knows about this disease. I also really need to learn how to be a better cook!

[Ennis-TX]

5 minutes ago, Nino said:

That's amazing that you started a gluten-free bakery! I have one by my house and walk my dog by it everyday. I know the disease is serious, and would get off gluten now if I could! I've never had much of a sweet tooth, but most of my diet has been gluten centered. That will be a big and tough change. I worry about getting the proper nutrients after quitting it. I hope I'll be able to see a dietician who knows about this disease. I also really need to learn how to be a better cook!

I quickly found omelettes to be one of my staples, fats, protein, veggies, and I put some coconut flour in to thicken it up along with one of my keto baked good or breads. I do not do carbs personally but a ketogenic diet. So omelette and a grain free nut flour based toast, roll, or muffin with nut butter or avocado on it. Getting a microwave omelette maker when I had a shared house made it easy to cook without contamination issues. I got my own mixing bowl different color, a hand blender and would blend my eggs, milk, coconut flour, nutritional yeast up and pour it in the maker sprinkling in my filling and cooking it up then topping in stuff like homemade salsa, taco sauce, or seasoning of choice so I could change the cuisine flavor every day. Makes starting off quite easy, I  also got my own crockpot/ricecooker/steamer combo pot and with a liner for good measure I would make big ole crock pots of soups in it with fresh veggies etc....transfer the whole thing to the fridge and eat off it for days.

Sirously first thing to invest in when changing, Microwave cook ware, crockpot, serving spoon, spatula, hand blender, mixing bowel and a roll of butcher/freezer paper for laying out for a clean prep surface (also makes clean up a breeze as you just toss the paper)

[Nino]

1 minute ago, Ennis_TX said:

I quickly found omelettes to be one of my staples, fats, protein, veggies, and I put some coconut flour in to thicken it up along with one of my keto baked good or breads. I do not do carbs personally but a ketogenic diet. So omelette and a grain free nut flour based toast, roll, or muffin with nut butter or avocado on it. Getting a microwave omelette maker when I had a shared house made it easy to cook without contamination issues. I got my own mixing bowl different color, a hand blender and would blend my eggs, milk, coconut flour, nutritional yeast up and pour it in the maker sprinkling in my filling and cooking it up then topping in stuff like homemade salsa, taco sauce, or seasoning of choice so I could change the cuisine flavor every day. Makes starting off quite easy, I  also got my own crockpot/ricecooker/steamer combo pot and with a liner for good measure I would make big ole crock pots of soups in it with fresh veggies etc....transfer the whole thing to the fridge and eat off it for days.

Sirously first thing to invest in when changing, Microwave cook ware, crockpot, serving spoon, spatula, hand blender, mixing bowel and a roll of butcher/freezer paper for laying out for a clean prep surface (also makes clean up a breeze as you just toss the paper)

Thank you for all of the tips, I really appreciate it! I've read that even non-glutenous grains (even ones who haven't been cross-contaminated) can be harmful to someone with Celiac's Disease. Is that true? Or is it just a case by case bases?

[cyclinglady]

You just need to worry about gluten found in wheat, rye and barley.   Oats are naturally gluten free, but are often contaminated in the field, transport, or factory.  Look for “gluten free” oats.   Some celiacs react to even gluten free oats, but that is not common.  It is one reason, experts recommend avoiding oats for a few months before adding them into your diet.  

You might have some intolerances to other foods like corn, lactose (dairy) and soy due to a damaged gut.  Some of those intolerances will resolve and some will not.  Best to keep a food journal to help identify them.  

[Awol cast iron stomach]

6 hours ago, Nino said:

 

 

6 hours ago, Nino said:

symptoms would go away if I stopped having gluten, but with IBS I'd have it for life. She really did not convey it very well, I miss my old doctor already.

Hmm celiac is for life too and symptoms often last longer than gluten just clearing the gi tract- many of us can all atest to that. With gi issues it's kind of would you rather be shot or stabbed (umm neither ) As Ennis shared a delayed diagnosis often just adds more gi issues to the celiac party. 

As for symptoms leaving the system when you stop eating gluten -often not. I had two Dr tell my daughter and I this recently (as she is going through issues currently) I had to bite my tongue really hard tell them I got worse after my challenge with additional intolerances and ataxia etc. I kept it short and calm and grabbed the documents I needed to get her to the next specialist -gi.

i had to say to my daughter you know the damage lasts longer than the food from viewing me the past 14 months she said "yea mom" . I said they don't know sweetie unless they are celiac/ NCGS themselves or live with one or are a celiac specialist, they just really don't know and don't want to know. 

I hope my daughter's gi as yours is talented and wise so that you and she are limited from some of our experiences.

3 hours ago, Ennis_TX said:

But I think it was a shock and awe tactic to get you to change your diet and not blow it off.....

Agreed. We have quite a few gi issues in my family over generations. Stomach , colon cancers, celiac, NCGS, removed gall bladders, appendixs.  it is my cousin, myself, and my children revealing the celiac piece. In our family / generations most cancers showed up on blood work testing . one lucky member had it show up on blood work when she had no symptoms the cancer was confined, isolated and removed. She has been well since. Ironically I was sent for colonoscopies early but kept trying to convey my issues relate to the immune system 

I was diagnosed IBS 20 plus years before my diagnosis 2016/2017. I struggled to get them to test my kids while gluten was still in my home . They missed that window and now my daughter is having issues since she was "clear " to eat gluten outside the home.

I am glad you found us and your Dr at least ran the panel perhaps she herself has a learning curve regarding celiac as well. For all I know my kids maybe our pediatricians first celiac/ NCGS family. Or we maybe the first celiac/ NCGS family or the first not to "fit" in the box.

good luck to you

[Nino]

1 hour ago, cyclinglady said:

You just need to worry about gluten found in wheat, rye and barley.   Oats are naturally gluten free, but are often contaminated in the field, transport, or factory.  Look for “gluten free” oats.   Some celiacs react to even gluten free oats, but that is not common.  It is one reason, experts recommend avoiding oats for a few months before adding them into your diet.  

You might have some intolerances to other foods like corn, lactose (dairy) and soy due to a damaged gut.  Some of those intolerances will resolve and some will not.  Best to keep a food journal to help identify them.  

Thank you very much! I hope my case was just caught in the earlier stages (if there is any) and I'll hopefully be tolerant with those other foods you mentioned. Keeping a food journal sounds like a great idea! I'll keep it in mind.

[Nino]

51 minutes ago, Awol cast iron stomach said:

 

Hmm celiac is for life too and symptoms often last longer than gluten just clearing the gi tract- many of us can all atest to that. With gi issues it's kind of would you rather be shot or stabbed (umm neither ) As Ennis shared a delayed diagnosis often just adds more gi issues to the celiac party. 

As for symptoms leaving the system when you stop eating gluten -often not. I had two Dr tell my daughter and I this recently (as she is going through issues currently) I had to bite my tongue really hard tell them I got worse after my challenge with additional intolerances and ataxia etc. I kept it short and calm and grabbed the documents I needed to get her to the next specialist -gi.

i had to say to my daughter you know the damage lasts longer than the food from viewing me the past 14 months she said "yea mom" . I said they don't know sweetie unless they are celiac/ NCGS themselves or live with one or are a celiac specialist, they just really don't know and don't want to know. 

I hope my daughter's gi as yours is talented and wise so that you and she are limited from some of our experiences.

Agreed. We have quite a few gi issues in my family over generations. Stomach , colon cancers, celiac, NCGS, removed gall bladders, appendixs.  it is my cousin, myself, and my children revealing the celiac piece. In our family / generations most cancers showed up on blood work testing . one lucky member had it show up on blood work when she had no symptoms the cancer was confined, isolated and removed. She has been well since. Ironically I was sent for colonoscopies early but kept trying to convey my issues relate to the immune system 

I was diagnosed IBS 20 plus years before my diagnosis 2016/2017. I struggled to get them to test my kids while gluten was still in my home . They missed that window and now my daughter is having issues since she was "clear " to eat gluten outside the home.

I am glad you found us and your Dr at least ran the panel perhaps she herself has a learning curve regarding celiac as well. For all I know my kids maybe our pediatricians first celiac/ NCGS family. Or we maybe the first celiac/ NCGS family or the first not to "fit" in the box.

good luck to you

I'm sorry to hear about your experience, I hope your daughter and I recover to be very healthy! My current doctor was not the one who issued the testing, that was my old one who recently retired. It seems my new one isn't as experienced, or that she didn't have enough time to tell me all of the details.

It seems that many of people who have had more complications due to Celiac Disease had not been diagnosed quickly. Maybe testing is getting better so that doesn't happen again. I feel awful for everyone who has had to suffer more! Before I was diagnosed via blood work, I didn't even know such a disease existed! We all have to rely on doctor's knowledge and testing, because most of us don't even know that there is something wrong with us. Like I did! I wish there was more awareness on the subject, I plan on looking into spreading it one day.

[plumbago]

Quote

It seems that many of people who have had more complications due to Celiac Disease had not been diagnosed quickly. Maybe testing is getting better so that doesn't happen again.

Sometimes I wonder if there isn't an age bias, meaning that doctors associate celiac disease with younger patients and are far more skeptical of the possibility of adults, especially middle aged and elderly adults, having the condition. And they are therefore less likely to order tests for it. I know of entire clinics that have not ordered one celiac test.

[Nino]

On 1/7/2018 at 8:59 AM, plumbago said:

Sometimes I wonder if there isn't an age bias, meaning that doctors associate celiac disease with younger patients and are far more skeptical of the possibility of adults, especially middle aged and elderly adults, having the condition. And they are therefore less likely to order tests for it. I know of entire clinics that have not ordered one celiac test.

Wow! I suppose that is a possibility, no wonder so many people have suffered so long without a diagnostic! It seems I'll be getting my biopsy on Friday due to someone cancelling. I'm quite nervous now, everything hasn't really sunk in too deep yet! I feel a lot better due to everyone's kind words though.