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My Family
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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.

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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.

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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.

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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.

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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.

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Easier to pop a pill than to change eating habits.

Yup, the "fix me" mind set.

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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.

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

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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