Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Extended Family -- What If They Refuse To Adjust?
0

30 posts in this topic

I am sure all of you will get this one. On Christmas day, I have to have dinner with in laws. My husband is celiac and we are at his sister's house, whom I think has undiagnosed celiac and refuses to get tested, anyway, she's peeling potates and at the same time eating Italian bread with butter; getting bread crumbs in the butter dish and there are bread crumbs strewn all over the table and where she's peeling potatoes. She says she's so hungry and had to eat something. That's when we arrived. Our eyes were popped open in shock and dismay! The crumbs are in the area of the peeled and sliced potatoes! So my husband, carefully says, my food can't be near those crumbs and they are on the potatoes. She replies angrily: Well they'll cook off when they are in the pot!

I think family members are the worst to get to understand what is and is not acceptable. We've always presented to her in a nice way how gluten cannot be around the gluten-free foods and no mixing and matching of utensils, etc. She seems to think that the gluten will go away by magic. I think friends understand and want to comply better than family. When we tell her the "rules" she feels we are being bossy and she gets her back up (she's really not accepting of cricitism in any form as she has no humility, but that's got nothing to do with celiac). She's his only sister and only relative so there's no getting out of going there for Christmas. We would have gotten there sooner & I would have peeled, but a pipe in our kitchen burst and it took up all of our time that morning. I cringe to think of all the times we weren't at her house and what the heck she did to the gluten-free food...

0

Share this post


Link to post
Share on other sites


Ads by Google:

Donna, I feel your pain. My four year old was just diagnosed with celiac disease through Enteroloab with the gene and stool test. Not only do I have the extended family not willing to admit the diagnosis, they feed her gluten and casein products just to spite me. My daughter comes home and the last time it took seven laxatives to make her go to the bathroom. (and days of sitting on the potty with severe cramps) If that is not enough, the pediatritian who is good friends with my ex and has misdiagnosed my childs breakouts as eczema since the time she was born, refuses to admit his mistake. The two hang together and do dinners while my daughter suffers in pain. Talk about being flushed down the toilet. I don't think it is possible to get any more frusterated. BUT I AM NOT GIVING UP.

Cheryl

0

Share this post


Link to post
Share on other sites

Cheryl

If they are doing that on purpose to spite you they are sick people.

0

Share this post


Link to post
Share on other sites

Hi, guys. It's Donna again. I started this post in a fit of frustration one day. I must admit that I have truly enjoyed the bantering back and forth on the topic. While I am not always feeling well enough to answer, I have checked in regularly.

I had a much better Christmas this year. I suppose after seeing what can happen with one meal that is cross-contaminated (August 16...weeks of gastro symptoms, 3 hospital visits, another round of specialists, and now more neurological damage to recover from), my family at long last suggested that I might be safer to bring my own food than to trust their ability to feed me. When I voiced my concern over possibly angering my hosts (like that should be a problem), I was told not to worry about that...they had rather never see me go through this again. My daughter even went to the grandparents and was not fed biscuits and gravy. She has had only mild symptoms since returning home. Maybe, just maybe, they are finally convinced that she won't ever get as sick as I am if she learns to take care of her diet.

You know, those of you who have doctors who don't believe it are in the extreme, but my endocrinologist and neurologist are somewhat frustrated that many primary care doctors and gastro docs don't believe it is "celiac" until the damage is already done. When they see the symptoms building over several years, why wait for the biopsy to show that you are damaged and miserable. Humm...several family members with celiac, you have vomiting, diarrhea, and bloody stools...why on earth would you wait for a biopsy to become positive before you considered celiac and a gluten free diet??????? If the diet doesn't help, you have at least eliminated the most likely cause and can realistically look for others.

By the way, to the one with the ex and the pediatrician: I would be seeking a doctor who would pay attention to me and those lab results. Find someone who will be supportive. Doctors are not usually like family members that you cannot control.

I'll just bet that there are some folks on this site who might make a suggestion for a physician in your area.

Donna

0

Share this post


Link to post
Share on other sites

By the way, if your four year old has a significant new breakout, consider taking him to a dermatologist to check for DH. Just make sure they know what you want to check before you get there since they often have to have either special equipment or have a special lab pickup for it. You shouldn't hurt anybody's feelings by taking a child with a skin rash to a dermatologist! The DH breakouts "itch" intensely. I put that in quotes because it is not a traditional itch like a mosquito bite, but more of a prickly needles attacking you from under your skin itch. I have had both a DH outbreak and poison ivy at the same time. Believe me, I'd take the poison ivy any day if given a choice.

Donna

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined