Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 To Vent!

siouxsie

Recommended Posts

siouxsie Rookie
siouxsie
Posted

I'm celiac disease, Dx last Dec. My 2 children have genetic disposition, my hubby had weak pos. on blood work...won't do further testing or go gluten-free, not even gluten restricted, my m-i-l is under going testing, thinks she has IBS or reaction to diabetes medicine, was severly painfully bloated after eating 2 bagels in one day...she usually doesn't eat bagel b/c they constipate her. My mother figures I inherited celiac disease from her side of family but doesn't talk of having herself tested b/c she doesn't want to have to give somewthing else up (she's diabetic), also she mistakes the obesity in her family to mean they are all well nourished and couldn't possibly have a malabsorbtion disease. I'm surrounded by ostriches w/ their heads in the sand!!! I can't blame them...if I han't end up in er w/ such severe malnutrition issues, I probably would still have my head in the sand. I just don't know how to handle them all. I want them to all wake up but I can't seem to get their heads out of the sand. Most frustrating is the lack of support I'm getting fr. family about keeping children gluten-free. Sure, let me feed the children gluten until they end up in the er like I did...I'm sure no real damage will be suffered before than (ha! ha! ha!)O.K. sure, genetic disposition doesn't = celiac disease but if gluten is not in diet or atleast reduced, I think I'm keeping my kids from ever suffering excrutiating pain and loss of nutrients. I'm constantly praying for more specifics about this disease...I think the adults would react better if there were more black and white answers. We all have a few similiar symptoms and many different sympotms at the same time. SInce I'm the one who had been diagnosed and now gathers more information, I see their symptoms listed on websites or hear it from other people w/ celiac disease. Even the pedi GI said all first degree relatives should be tested but only the children of people w/ celiac disease are tested. I made him repeat that to my parents when I had the kids tested. How does anyone else handle their families and have you been able to get them tested and have them start living gluten-free? I have no sympathy or tolerance for any of their complaints until they do something about it. Thanks for listening.

----Suzanne

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

Hang in there Suzanne. I know how you feel. My family is oblivious to wanting to get testing, even when they have obvious (at least to me!) symptoms. I have 4 brothers and 2 sisters and only my older sister tried to get tested, but her doctor keeps giving her the run around and ordering hte wrong tests. Her 14 year old son has seriously stunted growth (he is the same size as my small for his age 9 year old!) and according to his testing he isn't Celiac, but they only ran one part of the 4 or 5 part blood test to come to that conclusion and that was three years ago. I think it warrants more testing.

My husband won't get tested, even though two of my 3 children have different genes than I do that cause gluten intolerance. I figure if they didn't get those specific genes from me, then wouldn't they have gotten them from my husband?! He says he doesn't have symptoms (which he does, but they are mild), doesn't eat much wheat anyhow, and doesn't want to have to give up foods he likes either. When I bring up the fact that if he doesn't get diagnosed, then his family won't even know that it runs along their side, too, he responds by saying they would never get tested or change their diets anyhow. So what, maybe that's true, but shouldn't that be their decision. This is not a case of what you don't know won't hurt you. This will hurt, eventually.

And I am an overweight Celiac. I was not able to lose any of the 60 lbs. I put on during my pregnancies, until going gluten free and in the past 6 months I have lost 15 lbs without even trying! I am looking forward to losing the next 40+ lbs. :D I know that my body was malnourished and that was why it would hang on to the fat, and I was sick, but not to the point of having severe diarrhea and losing tons of weight that way. Personally, once I found out about Celiac I was not going to just sit around and wait to get deathly ill. I needed to know if gluten was my problem and as soon as I confirmed my suspicians for me and my children, we all went gluten free and feel tons better!

I am of the opinion that if the kids have the genetic propensity to develop celiac disease, then it is wise to have them avoid gluten. Feeding gluten to someone who has the genes is like telling a person who has a family history of heart disease to eat all of the fatty, cholesterol laden foods they want until they have their first heart attack, and then go on a diet. Why wait till you are sick to get healthy, when you have the knowledge to keep yourself from getting sick in the first place. You don't know if you will develop heart disease any more than you know if you will get celiac disease, but why risk it! My kids blood tested inconclusive twice, stool tested positive, and gene tested positive. Their GI doctor doesn't consider them Celiac, but was willing to monitor them on the diet. And you should see how much they are improving on the diet. Growing by leaps and bounds when they were all previously small for their ages, and not so many stomachaches and diarrhea! They are so much healthier now, and their doctors all thought they were healthy before!

Everytime one of our relatives complains I bring up the subject of them getting tested. And when I was at my sister-in-laws house the other day I couldn't help but notice that they buy Pepto Bismol by the case! Not to mention that they are all supposedly lactose intolerant... I was discussing it with a sister-in-law from Colorado at a family reunion (for my husband's side) last week and she asked me what the point of being tested is, if the symptoms aren't bothering you. I brought up the subject of the higher risk of intestinal cancer, as well as, developing other diseases, like diabetes, lupus, thyroid disease, etc. And said that if her children had the genetic posibility of getting severely ill, wouldn't she want to know. It certainly made her stop and think. Of course none of them will consider testing if my husband doesn't start the ball rolling, since they all think it was my "bad" genes that caused it...

God bless,

Mariann

gf4life Enthusiast
gf4life
Posted

Oops... for some reason it posted twice, so I deleted the second message content, but can't remove it completely. Sorry...

YankeeDB Contributor
YankeeDB
Posted

Perhaps give them articles written by doctors that describe their symptoms in connection with celiac disease, and then leave them alone--no one likes being nagged or told what to do. You can't control others. Just take care of yourself and your kids and gently (GENTLY!) encourage your family to get tested. Just my $.02. Good luck!

tarnalberry Community Regular
tarnalberry
Posted

I like the "articles and information then leave them alone" option for your family, but I might talk to your husband a bit more. Not so much telling him he has to get tested or any of that, but that you are very worried about the long term effects of him eating gluten when he's already tested to be sensitive to it. Telling him that you don't want to raise your children alone after he develops colon cancer, or that you don't want to have to be taking him to the hospital all the time when the kids need their parents may be more effective than telling him that he's hurting himself. (You're talking about how you feel, which is slightly different.)

You might also consider sitting down and asking him some questions so you can understand where he's coming from. Ask him what he thinks the test means, what he thinks that means about his body, what he thinks about the diet, and what makes wheat so important to him. It is conceivable that he finds eating wheat more important than his health and his family (ok... barely, in some messed up way, but not totally impossible in the grand scheme of the universe, I suppose), and he may respond better if he feels you're trying to understand his perspective.

chasefamily Rookie
chasefamily
Posted

Hello everybody. I am so glad that i have found this site it has been so informative for me and aslo a great support for me too, I used to think that I was going crazy and that it was all in my head that even though I was sick all the time the doctors could never really figure out what was the cause of all of my health problems. I really hope that the endoscope will finially bring out the truth and I will staart to get healthier. I too am overweight and have no luck loosing, it seems when ever I would try to diet I would just seem to get more tired. I look forward to chating with each and every one of you, because I feel we are all in this together and need eachothers support just to get through these tough times. Well thats all for now I just wanted to say thanks.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    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

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...