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

Frustrated By My Sisters


Treen Bean

Recommended Posts

Treen Bean Apprentice

I have been gluten free for 2 years. Before I got sick, my older sister became ill with severe Celiac-like symptoms. She went on a gluten free diet, gained the weight back, stopped having symptoms, and basically returned to normal. She then began incorporating gluten back into her diet. Now, she just eats low gluten. When she starts having symptoms again, she cuts out gluten for a few weeks, then eats it again when she begins to feel better.

I began having symptoms and have been gluten free ever since. I've never felt better. However, I still get sick even from the slightest amount of CC.

From everything I've read, my sister, though seemingly able to eat gluten, is probably still causing severe internal damage. I have expressed my concerns to her many times. She always says, "Well, I guess I'm just not as strong as you. I can't stay on a gluten free diet. It's too hard. Besides I don't ALWAYS get sick, and I don't eat THAT much gluten." I get so frustrated. Doesn't she care about her health. She is very skinny and always struggling to gain weight even though she eats like a trucker. She also has bad skin and under eye circles. Even more devastating to me is watching the struggles she and her husband are going through trying to conceive. I know one of the possible side effects of undiagnosed Celiac's is infertility. I just wish she would listen to me.

To make matters even worse, my little sister has started to show Celiac-like symptoms. She also refuses to go gluten free. She insists she doesn't like the way gluten-free food tastes and it's too difficult of a diet to follow. I love my sisters so much. I am terrified they will develop an awful disease brought on by undiagnosed/untreated Celiac's Disease.

Any ideas of how to better communicate my concerns with them would be greatly appreciated. I am just so worried about them.


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



Celiac.com Sponsor (A8-M):



Amyleigh0007 Enthusiast

Maybe you could bake them some yummy gluten free goodies or invite them over for a delicious gluten free meal that you have prepared. That way they could see that gluten free can be tasty. Print informational material from the internet and give it to them. I also suffered from infertility due to un-dx gluten issues. It took me 5 years to get pregnant with my daughter. There are 7 1/2 years between my two children because I could not get pregnant for a second time and I am convinced it was my gluten intolerance. My body was really messed up. I hope your sisters see the light soon.

Gemini Experienced
I have been gluten free for 2 years. Before I got sick, my older sister became ill with severe Celiac-like symptoms. She went on a gluten free diet, gained the weight back, stopped having symptoms, and basically returned to normal. She then began incorporating gluten back into her diet. Now, she just eats low gluten. When she starts having symptoms again, she cuts out gluten for a few weeks, then eats it again when she begins to feel better.

I began having symptoms and have been gluten free ever since. I've never felt better. However, I still get sick even from the slightest amount of CC.

From everything I've read, my sister, though seemingly able to eat gluten, is probably still causing severe internal damage. I have expressed my concerns to her many times. She always says, "Well, I guess I'm just not as strong as you. I can't stay on a gluten free diet. It's too hard. Besides I don't ALWAYS get sick, and I don't eat THAT much gluten." I get so frustrated. Doesn't she care about her health. She is very skinny and always struggling to gain weight even though she eats like a trucker. She also has bad skin and under eye circles. Even more devastating to me is watching the struggles she and her husband are going through trying to conceive. I know one of the possible side effects of undiagnosed Celiac's is infertility. I just wish she would listen to me.

To make matters even worse, my little sister has started to show Celiac-like symptoms. She also refuses to go gluten free. She insists she doesn't like the way gluten-free food tastes and it's too difficult of a diet to follow. I love my sisters so much. I am terrified they will develop an awful disease brought on by undiagnosed/untreated Celiac's Disease.

Any ideas of how to better communicate my concerns with them would be greatly appreciated. I am just so worried about them.

I know exactly how you feel because I have 2 sisters myself who are strong possible Celiacs/GS also. My younger sister sort of gets it and has tried following the gluten-free diet because her teen daughter definitely has a problem with gluten. Her daughter is better at it than my sister and she's only 14! The problem my sister has is she is basically a lazy person and when the going gets a little tough, she caves and cheats. Then her symptoms flare up to the point where she recently went to a rheumatologist and is now showing thyroid antibodies, indicating Hashimoto's thyroid disease and possibly Lupus.

The older sister has bad asthma, which I strongly suspect is triggered by food, but she prefers to take loads of medication because it's easier. I was pleasantly surprised when she recently told me she was doing a trial gluten-free diet but, again, she is kind of lazy like my other sister and isn't into food prep or all the other things that are necessary to get this diet correct. That's the biggest hurdle, I find.....you have to be a motivated person and one that was extremely sick from celiac disease, like I was. When you cannot leave the house and work and are fading away to nothing, weight-wise, it's very easy to follow a gluten-free diet. My sisters have different symptoms and are not as sick as I was. They have also not been tested, as far as I know.

I would disagree about the diet being too hard to follow or that the food doesn't taste good. I am eating as well as I was before I was diagnosed and I have very high standards when it comes to food. Yes, you have to put way more effort into eating and food prep but a good Celiac eats better than most of the American population and the benefit is I am on no cholesterol, blood pressure or other meds they force on people because my diet is so good. Like I said, it takes a motivated person and we are not all motivated, are we? :P

I know it's very hard to see it in family members and have to bite your tongue most of the time. Almost my whole family have symptoms (it's on both sides!) and many have serious autoimmune problems but gluten wins out every time. I can sort of understand it because I used to smoke a little bit and we all know how the world treats smokers. There is a difference though.....there is NO substitute for cigarettes at all but there is plenty of great tasting gluten-free food and mixes out there so it's a no brainer as far as I am concerned. gluten-free brownies are better than gluten filled brownies.....you get the picture! Like myself, you will have to learn to let them make their own bad choices and say nothing or they will avoid you like my family sometimes does with me. My mother won't even talk to me about health issues anymore and she is the picture postcard of a Celiac. I just gave up! :(

ang1e0251 Contributor

I feel your pain. I too have closed ear sister. She more than likely has some of it going on but even when she describes a yucky symptom to me, no reaction to "it could be celiac". She's really in denial. But I long ago stopped trying to help her with issues. She will listen but, you know, Angie couldn't possibly know anything, she's a tree hugger type. OK, She's never actually said that to me but I sure get that vibe. She doesn't mind that I eat that way but she won't even entertain the idea. I just have to sit by and let her make her own health choices. It's a very hard thing to do but you can drive them away if they think all you do is lecture them. Just love your sisters, be the great example you have already shown yourself to be, and welcome them without crtitsism if they turn to you. :)

Mtndog Collaborator

I'm sorry Treen Bean- it's so difficult to watch loved ones suffer when they know what would make them feel better. It's also hard knowing what could potentially happen to them if they continue on that path. :(

I agree with much of what people have suggested here- show your older sister the evidence about untreated celiac and fertility.

I think it really comes down to quality of life (when the big arguments like cancer, infertility don't work). Next time she's sick and can't do something, ask her if she really wants to live this way? She's probably scared and in denial. maybe her husband can help (like a gluten intervention?).

Keep us posted.

Treen Bean Apprentice

Thanks for all of your words and advice. As of now, neither of my sisters have listened to me. I am going to continue loving them and being patient. My one passive aggressive form of action, is baking/cooking them delicious gluten free treats/meals. They both LOVE my cooking and beg me to cook for them. In fact, my older sister requested my gluten free Frosted Banana Spice cupcakes for her birthday "cake". They both claim to "feel so good" after they eat my cooking. It's no wonder, huh?! Maybe one day they will come around. I will continue to hope and pray for that day.

Juliebove Rising Star

Sometimes you just can't get through to people. I have a relative with food allergies (not life threatening) who continues to eat the allergens, avoiding them seemingly only when it suits her. She is always baffled as to why she is sick all the time and insists it can't be the food.


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor
In fact, my older sister requested my gluten free Frosted Banana Spice cupcakes for her birthday "cake".

Could you post a recipe? Those cupcakes sound delicious.

  • 2 weeks later...
Prudence Rookie

I found this post to be really interesting. I was recently diagnosed, and I am still amazed with how many symptoms this illness encompasses. I can spot down the line all the symptoms that not only have applied to me, but also my sister and mother. My eldest sister was diagnosed with IBS, and Bi-polar disorder. Neither diagnosis has ever sat well with me. It just didnt seem correct. She never had the high "mania" needed for a bi-polar diagnosis. Anyway, she has been having trouble conceiving, though the doctors can not find anything physically that would prevent a pregnancy. I sent her a email, and copied my mother. I listed all the symptoms that they've had for years, and attached websites on Celiac for them to reference to. Seeing how we are related, and I have it, you'd think they'd listen. Neither did. Its so frustrating. I completely understand where you are coming from. I feel so much better staying gluten-free, and I just know that it would be the same for them. They refuse to even be tested. What else can you do?

debmidge Rising Star

My husband's sister is the same way. She has already said that she'd kill

herself first before going on a gluten free diet like her brother. She admits

that she probably has celiac but says she'll never stop eating wheat

pasta (she goes out to eat all the time), and she has a lot of celiac

symptoms

1) Indigestion/bloating/gas

2) Dental/bone problems

3) can't gain weight

4) frequent bowel movements without eating fiber, etc.

5) "fainting" spells (I am thinking gluten seizures)

6) arthritis and joint pain

7) vision problems (unknown if there's a connection)

8) brain fog

9) attention issues (unknown if there's a connection)

It's like the old expression "You can lead a horse to water, but you can't

make him drink."

Treen Bean Apprentice
Could you post a recipe? Those cupcakes sound delicious.

Okay here is the recipe:

Open Original Shared Link

I used a simple cream cheese icing. They are amazing and so moist.

Enjoy!

  • 3 months later...
Treen Bean Apprentice

I have an update on my sisters. My older sister and her husband have gone completely gluten free and have maintained the diet for 2 months now! They are both feeling great. My sister has started gaining some much needed weight and her husband has lost 15 pounds! I am so proud of them for finally taking a proactive approach to their health! Now, if my little sister would get on board the gluten free train! Thanks again for all of your comments and advice.

ang1e0251 Contributor

I'm so happy for you!! What a weight off your shoulders. If they've gone this long on the diet, they will probably stick with it. And you never know about little sister, with you two double teaming her, she might just cave and get with it!

JNBunnie1 Community Regular
I have an update on my sisters. My older sister and her husband have gone completely gluten free and have maintained the diet for 2 months now! They are both feeling great. My sister has started gaining some much needed weight and her husband has lost 15 pounds! I am so proud of them for finally taking a proactive approach to their health! Now, if my little sister would get on board the gluten free train! Thanks again for all of your comments and advice.

Whoohoo!!!

Maybe next time they say gluten-free food doesn't taste good, you can remind them of the cupcakes!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748

    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.