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

My Family
0

8 posts in this topic

I haven't been diagnosted just yet, but I have suggested to my mom that she and one of my little sisters get tested.

I have 3 sisters and the one that I am suggesting that she have tested has migraines to the point of vomiting and has recently been experiencing bloating after eating bread. Which is just crazy considering the fact that she is a fan of bread.

My mother is willing to have my sister tested but said not to worry about her. She has managed this long. My mother was told she had IBS about 8 years ago.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Mnicole - convincing family is tough. I've been trying to get my mom to get tested. She was diagnosed with IBS over 20 years ago, has MS and Fibromyalgia...tons and tons of symptoms but she hasn't agreed yet. Every time we talk I share the positive changes I'm finding and every so often I suggest she think about it. She's stubborn but the apple doesn't fall far from the tree so I'll keep trying! Focus on the positive with your mom. Maybe you can convince her.

0

Share this post


Link to post
Share on other sites

Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

0

Share this post


Link to post
Share on other sites

Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

I know for me, I am having a hard time coming to grips with it all. I accepted the IBS diagnosis without blinking because all I had was stomach issues. There were some days it was so bad that I felt like I used an entire package of tp and spent my day in the bathroom, and other times where I would go a week or more without any problem at all, some days I would have the OPPOSITE problem: Constipation.

But that was all. so I could accept it. I learned to deal with my tricky stomach and stopped being shy about public bathrooms. Its just the way life was. I barely even gave it much thought because no one told me to restrict my diet. I had my gall bladder removed, so I did watch the heavy, greasy stuff but otherwise the dr basically shrugged his shoulders and wiped his hands clean of me. And I trusted him.

Now, its more than GI stuff, its headaches, sinus infections, cramps, joint aches, chills, fever and irritibility. But still, I am having a hard time accepting celiac disease as a diagnosis only because its become so widespread in the last few years, I am afraid of accepting it in case its just the "new and cool" diagnosis. I am being told to restrict my diet...that means a lot of change for this bread lover...

Its all pscholigical. I WILL accept it and I WILL do what I need to but its so severe to me, its hard to just...come to grips with. I also am having a very hard time getting my parents and in laws to understand. My husband is awesome, he gets it, as do my kids, but everyone else looks at me like I am crazy and "buying in" to the newest and coolest diagnosis...

its hard.

0

Share this post


Link to post
Share on other sites

Oh my.. why do people accept all those other diagnosis like IBS, Fibro etc etc but not celiac/gluten intolerance? Such a mystery. There is a PHD thesis in this. Why are other diagnosis acceptable but another not? Pure psychology and perhaps some history, agricultural/economic PR.. I'm not sure exactly.

Easier to pop a pill than to change eating habits.

0

Share this post


Link to post
Share on other sites




Easier to pop a pill than to change eating habits.

Yup, the "fix me" mind set.

0

Share this post


Link to post
Share on other sites

It took me over two years to convince my mom to get tested but she finally did, and guess what? She has celiac disease. I knew it all along, and I suspect that she knew too and didn't want to test until she was really ready to cope with the diagnosis. I, myself put off testing for almost a year after my youngest was diagnosed. I knew he had gotten it from me and I wasn't ready to give up my favorite foods just yet. Plus, I was so focused on him and his health that I didn't want it to be all about me (too).

My kids and I did a family tree to see how many of our blood relatives need to be tested, and the number was a staggering 56! (My mother has 12 brothers and sisters and they all have children). Out of those 56 only me, my two children, my mom, and my brother (negative!!) have been tested. All others have refused.

I remind them constantly on Facebook and our family website. I send articles and little tidbits about yummy gluten-free foods but it doesn't work. My cousin, who is more like a sister to me, just flat out refuses to test her kids. It's infuriates me because her youngest is sick a lot with celiac disease like symptoms and I worry about them. But what more can I do? I just get frustrated and then...let it go.

0

Share this post


Link to post
Share on other sites

My mother just showed me her vitiligo. Crazy that she will not get tested.

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
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,154
    • Most Online
      1,763

    Newest Member
    calla84
    Joined