Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Need Help For My Brother


Jerri Ward

Recommended Posts

Jerri Ward Apprentice

My Brother was diagnosed with Celiac in Oct. 2005 and I was diagnosed in Nov. 2005. We have no idea where we got it from, because no one in our family has it. When he had his biopsy done his dr. told him that they did not even have to take a biopsy. That is how much damage he has. He had been having diarrhea for over 2 years and had not done anything about it. All his dr. told him was that he had Celiac Disease and that he had to be on a gluten-free diet for the rest of his life. When I was diagnosed, I had blood tests which were positive and a biopsy which was positive. My dr. set me up an appt. with a dieticien. When I told my brother about it he told me that wasn't necessary. He said that all that we could eat was fresh vegetables and meat that was grilled without anything on it. Well I went to see the dieticien and learned that there are alot more options. I also immediately started checking out the boards here. I have been gluten-free since then except one time that I had to have surgery and I got sick after surgery and had to eat a saltine cracker to stop the throwing up. Well my brother is a different story. He did not do any research about Celiac and the consequences of continuing to gluten your body. Therefore he has been continuing to gluten his body since his diagnosis. It is not continual, but it is enough that it is making him sick. He did not tell me so, but last month my mother and I went to his house because he and my sil and my 2 nieces were having a birthday party for her. My sil said that she was worried about him because he is tired all of the time. She said that he has to come home during the day to lay down and take a nap. I told her that is because of the Celiac. I wanted to go into more detail, but could'nt because my brother was in the next room. He is eating all of the time and has put on a whole lot of weight. He has never been over weight. I am assuming it is related to the Celiac. I am very concerned for him. He has pneumonia right now and if he is not better by Mon., his dr. is going to put him in the hospital. He owns his own business and does not have any insurance. I want to talk to my sil about the dangers of what he is doing to his body by continuing to gluten his body hoping that she can talk to him. I know that there are those of you who have had it longer than I have and are more experienced with it and the dangers of it. I was wondering if some of you would be so kind as to post some of the dangers as to what my brother is doing so that I can print them off and share them with my sil so that she can try and get through to my brother. My niece Alyssa who is 10 is always saying to me Daddy cheated again today, Aunt Jerri, is Daddy going to die? She is really scared. I don't want to lie to her, but he looks really bad.

Thank you for you help.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sherylj Rookie

I want to talk to my sil about the dangers of what he is doing to his body by continuing to gluten his body hoping that she can talk to him. I know that there are those of you who have had it longer than I have and are more experienced with it and the dangers of it. I was wondering if some of you would be so kind as to post some of the dangers as to what my brother is doing so that I can print them off and share them with my sil so that she can try and get through to my brother. My niece Alyssa who is 10 is always saying to me Daddy cheated again today, Aunt Jerri, is Daddy going to die? She is really scared. I don't want to lie to her, but he looks really bad.

Thank you for you help.

Jerri Ward Apprentice
I want to talk to my sil about the dangers of what he is doing to his body by continuing to gluten his body hoping that she can talk to him. I know that there are those of you who have had it longer than I have and are more experienced with it and the dangers of it. I was wondering if some of you would be so kind as to post some of the dangers as to what my brother is doing so that I can print them off and share them with my sil so that she can try and get through to my brother. My niece Alyssa who is 10 is always saying to me Daddy cheated again today, Aunt Jerri, is Daddy going to die? She is really scared. I don't want to lie to her, but he looks really bad.

Thank you for you help.

It sounds as if your brother is in big time denial. And I totally understand your concerns. I don't have any concrete advice. Adults make their own decisions. Is he being supported by other family members. Cleansing the house of the pastas and breads is one of the first steps or does he gluten on MacD and Burger King?? I feel for you..and wish you the best. I am sure someone will have better suggestions..Hang in there..Keep us posted.

My brother cheats everywhere. The night they had a birthday party for my mother, he had a rather large piece of chocolate cake that was loaded with alot of vanilla icing. He asked me if I was going to have a piece. I told him no thanks. I had been gluten-free too long. My youngest niece told me "oh come on Aunt Jerri it is just one time". I told her that these just one times are continuing to damage the gut. He does McDonalds, KFC, Erics Grill and many other places that I don't even know about including the food that his wife cooks at home. He has no support system, because he never did any research and she has done no research. That is why I would like to educate them, but he would not hear it from me. I would have to go the my sil. Now that he has pneumonia as is very sick, I am very worried with his immune possible being weakened that it could get very bad..

ravenwoodglass Mentor

I am so sorry you are going through this. The best advice I can give you is to either print out some info from here or get her to sit with you by the computer and read. Another good site is the Celiac Sprue Association web site. They have the diet broken down into initial healing and after healing. The best thing your SIL can do is to just make the whole house gluten-free. That way at least they will know that when he is eating at home he is not getting gluten. He is killing himself.

NoGluGirl Contributor
My Brother was diagnosed with Celiac in Oct. 2005 and I was diagnosed in Nov. 2005. We have no idea where we got it from, because no one in our family has it. When he had his biopsy done his dr. told him that they did not even have to take a biopsy. That is how much damage he has. He had been having diarrhea for over 2 years and had not done anything about it. All his dr. told him was that he had Celiac Disease and that he had to be on a gluten-free diet for the rest of his life. When I was diagnosed, I had blood tests which were positive and a biopsy which was positive. My dr. set me up an appt. with a dieticien. When I told my brother about it he told me that wasn't necessary. He said that all that we could eat was fresh vegetables and meat that was grilled without anything on it. Well I went to see the dieticien and learned that there are alot more options. I also immediately started checking out the boards here. I have been gluten-free since then except one time that I had to have surgery and I got sick after surgery and had to eat a saltine cracker to stop the throwing up. Well my brother is a different story. He did not do any research about Celiac and the consequences of continuing to gluten your body. Therefore he has been continuing to gluten his body since his diagnosis. It is not continual, but it is enough that it is making him sick. He did not tell me so, but last month my mother and I went to his house because he and my sil and my 2 nieces were having a birthday party for her. My sil said that she was worried about him because he is tired all of the time. She said that he has to come home during the day to lay down and take a nap. I told her that is because of the Celiac. I wanted to go into more detail, but could'nt because my brother was in the next room. He is eating all of the time and has put on a whole lot of weight. He has never been over weight. I am assuming it is related to the Celiac. I am very concerned for him. He has pneumonia right now and if he is not better by Mon., his dr. is going to put him in the hospital. He owns his own business and does not have any insurance. I want to talk to my sil about the dangers of what he is doing to his body by continuing to gluten his body hoping that she can talk to him. I know that there are those of you who have had it longer than I have and are more experienced with it and the dangers of it. I was wondering if some of you would be so kind as to post some of the dangers as to what my brother is doing so that I can print them off and share them with my sil so that she can try and get through to my brother. My niece Alyssa who is 10 is always saying to me Daddy cheated again today, Aunt Jerri, is Daddy going to die? She is really scared. I don't want to lie to her, but he looks really bad.

Thank you for you help.

Dear Jerri Ward,

I understand what you mean. My mother and brother probably have this as well. They won't listen to me. My brother refused to give up his pastries! I told him, they are not worth getting sick over! I am gluten intolerant, and could be Celiac. My brother and mother have diarrhea all the time.

It sucks. You cannot save people from themselves, which I have unfortunately learned the hard way.

Sincerely,

NoGluGirl

darlindeb25 Collaborator

NoGluGirl is correct Jerri, unforunately, we can not make another take care of themselves. Until your brother wants to go totally gluten free, you can't make him. Some people get upset with me when I say this, but living gluten free is a lifestyle choice we all must make and until he makes that choice, he will be sick and of course, shortening his lifespan. He doesn't even realize how lucky he is to have a sister who is so willing to help him out. I remember a family dinner a while back, my dad had finally been diagnosed celiac, my sister and I had been gluten-free for some time and my brother looked at all 3 of us and said, "All you need is a good dose of barley soup and I am just the guy to make it for you!" He has no respect whatsoever for this life change we have had to make. He thinks we are nuts and I am sure, he probably should be gluten-free too.

All you can do is to keep talking to him, try to make him understand.

Nancym Enthusiast

Too bad your SIL isn't taking it more seriously. She *could* be providing him with gluten-free food so he wouldn't be so tempted, or even take the whole family gluten-free. *sigh*


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

To me it sounds like they have such an extreme idea of what the diet entails ("you can only eat veg and grilled meat without anything") that it puts them off even trying. It might help if you can give your sil a list of normal mainstream products that are gluten free so that they start to realize that it's possible to be gluten free and still eat pretty "normal", and to even eat snacks and junk food if one is so inclined. :) I'm not in the US but there are board members who have lists.

Pauliina

NoGluGirl Contributor

Dear Jerri,

I would be more than happy to provide a list to print out for your bro. There are some things we can eat that I never thought we could have! You just have to try and focus on what you can eat, not what you can't. It can be difficult. Like, I cried the other day when my Dad brought home Chinese, because it is my favorite. No one understands what this is like but the people on here! My family treats me like a paranoid freak. Even so, if they want to destroy their body, then fine. But, I will not allow them to make me sick anymore! Here is a list of safe foods and products:

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip

Philadelphia Cream Cheese

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)

Snack Foods:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Dora The Explorer Cinnamon Starts

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are safe)

Idahoan Instant Potatoes

Dinty Moore Beef Stew

Hormel Chili

Hormel Beef Au Jus Entree

Hormel Pork Au Jus Entree

Hormel Spam

Hormel Turkey Spam (oven-roasted or smoked)

Also:

Soaps - Soft Soap, Dove

Cascade, Dawn for dishes

Colgate Toothpaste

Crest Whitening Expressions Toothpastes

Glide Floss

Dove Shampoos and Conditioners will clearly list gluten containing products

I hope this helps!

Sincerely,

NoGluGirl

Generic Apprentice

I have watched my dad litterally destroy his health, because he refuses to get tested for celiac. He has developed on top of the chronic diarrhea, Misosytis, polymialgia, diabetes and rheumatoid arthrtis. Plus gawd only knows what, that hasn't been diagnosed.

He refuses to give up his miller beer and his junk food. He is allergic to rice so he refuses to eat most gluten free foods due to it. LOL he claims it gives him diarrhea! Well so does everything else he eats, so I don't think he would know the difference.

I'm going to try and get him to try the red bridge beer, but I'm sure the cost will be too much for him.

My grandmother developed stomach cancer, looking back I'm 100% sure she was celiac also. Her mom was diagnosed at 82y/o w/ celiac.

It may not neccassarily shorten your life, but it sure can make it miserable. Both my grandma and my great grandma died with senile dementia, which I'm sure was due to gluten damage.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,904
    • Most Online (within 30 mins)
      7,748

    AnneSN
    Newest Member
    AnneSN
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.