A Celiac's Quality of Life: Passages

CDC/regional health agencies need to take a more proactive/preventive care in testing everyone for Cediac/gluten allergies.  What a failed health organization.  How many people with Cediac/Gluten allergies committed violence, suicide, just plain homeless.  We must protect those just growing up without the knowledge we all suffered threw without knowing. 

I was asked how long I had to be on this gluten-free diet.  My answer....The rest of my life!!  I had a heart doctor tell me that I taught him something about medicine since there are so many that I can not use because they either have gluten in them or the companies cannot or will not tell what is in the meds.  I ended up writing my own cookbook because a lot of recipes, while gluten-free,  do not fit my other food problems.  I do not sell my cookbook, but share it with others just getting started.  There is so much stupid out there associated with gluten-free diets.  One has to be very careful...especially things like pre-sprouted grain or some of the lesser known grains.  I always end up with a long discussion with someone getting started.  I suggest fresh foods.  But, meat from grain fed animals can cause problems for some people. I can understand a person's frustration having to get started on a gluten-free diet.  I have created a couple of pages of helps I usually share with newbies.  After 18 years of doing this gluten-free thingee, people are accustomed to me arriving at fancy banquets with my cooler, or asking for strange things such as don't use iodized salt, please; or don't put any cheese, tomatoes or cucumbers on my salad, please!  But that's not a salad!!  To me it is!!!  I understand the dread in starting out.  I have several tried and true homemade breads I now use and I have adapted many of my favorite recipes to gluten-free successfully with my husband's help.  One of my favorites is calorie loaded....Biscuits and Chocolate Gravy Yum!  I did not mean to write a book, but I just wanted to say I understand the frustration of many. BTW I was diagnosed at 60 yrs old.

I was diagnosed at age 65 (two years ago)after a lifetime of wondering why I hurt after I ate, bloated and no energy! I also have lactose intolerance and hypothroidism. I take Tirosol-sol  for my hypothroidism , yet the medicine is quite expensive. I cannot take many anitbiotics that are pills as most have gluten binders.  I have many food allergies and have only gained 2 pounds in the two years I have been struggling to eat clean.  I only weigh 94 pounds. My problem has been trying to find a toothpaste that does not have ingredients I cannot have.  My mouth gets ulcer sores, which are also on my tongue along with a red throat.  I have tried Crest and Colgate products, many other supposedly gluten-free but many have carrageenan which is not good.  I say everyday to myself 'I am blessed that I am here'.  Many people do not understand it and wonder why I don't go to their houses to eat.  I tell them to look up your website to learn about it.  I thank your site for all the information I can amass!

I am a complete newbie to Celiac. I was tested positive a couple months ago and told that with my higher levels of certain antibodies I most likely am Celiac. I am still waiting to see a Gastroenterologist for possibly an upper endoscopy to be officially diagnosed. I am 35yr old mother of 4, and have been on a journey for a decade at this point with one doctor or another either saying maybe I just needed to be more physically active,( that just wipes me out like no other ), maybe I had thyroid problems, every single time a ew doctor would have me tested it was always negative. No one could explain why my hair is falling out, why I’m constantly anemic, why I have condromelasia, (that may be spelled wrong, my cartilage in my body is already deteriorating), which happens when I was having a dance party in the livingroom with my kids and as a result of my deteriorating joints the tendon in my hip tore clean off the bone. That’s how I found that little nugget out. I was diagnosed with that 4 yrs ago now. I have been diagnosed with depression and anxiety. Along with my constant exhaustion, I sometimes am the only one in my house sick and I will be sick for weeks at a time and then it takes me another week or more to just recover from that. I would get extreme lethargy after eating meals. At times so bad my eyes would be involuntarily closing on me as my body was forcing itself to sleep. Finally I had gotten a new doctor who looked at my background asked me a series of questions NO ONE as previously asked and said she feels strongly I may have Celiac. Well we did the blood work and here we are. Finally, yet it is such a bittersweet thing. I finally know what is wrong with my body, however I have now been put in a box that the rest of the world is not on board with yet. My husband is trying his hardest to be supportive. But I must say this feels like an impossible task to accomplish with four children in tow who touch everything and try as I might, I just simply can’t get upset with them for not understanding how serious this is. They can’t see, touch it. It’s hard for me to understand let alone my children. I won’t lie and say sometimes I feel like I am floundering and just want to give up.

3 minutes ago, Guest Mandy said:

I am a complete newbie to Celiac. I was tested positive a couple months ago and told that with my higher levels of certain antibodies I most likely am Celiac. I am still waiting to see a Gastroenterologist for possibly an upper endoscopy to be officially diagnosed. I am 35yr old mother of 4, and have been on a journey for a decade at this point with one doctor or another either saying maybe I just needed to be more physically active,( that just wipes me out like no other ), maybe I had thyroid problems, every single time a ew doctor would have me tested it was always negative. No one could explain why my hair is falling out, why I’m constantly anemic, why I have condromelasia, (that may be spelled wrong, my cartilage in my body is already deteriorating), which happens when I was having a dance party in the livingroom with my kids and as a result of my deteriorating joints the tendon in my hip tore clean off the bone. That’s how I found that little nugget out. I was diagnosed with that 4 yrs ago now. I have been diagnosed with depression and anxiety. Along with my constant exhaustion, I sometimes am the only one in my house sick and I will be sick for weeks at a time and then it takes me another week or more to just recover from that. I would get extreme lethargy after eating meals. At times so bad my eyes would be involuntarily closing on me as my body was forcing itself to sleep. Finally I had gotten a new doctor who looked at my background asked me a series of questions NO ONE as previously asked and said she feels strongly I may have Celiac. Well we did the blood work and here we are. Finally, yet it is such a bittersweet thing. I finally know what is wrong with my body, however I have now been put in a box that the rest of the world is not on board with yet. My husband is trying his hardest to be supportive. But I must say this feels like an impossible task to accomplish with four children in tow who touch everything and try as I might, I just simply can’t get upset with them for not understanding how serious this is. They can’t see, touch it. It’s hard for me to understand let alone my children. I won’t lie and say sometimes I feel like I am floundering and just want to give up.

Hi Mandy

It is often quite a journey, as you have already discovered, to get to a diagnosis.   Your new doctor should be congratulated.   I'm so sorry you have had to go through so much but hopefully now you know that the problem is gluten, you can start to make changes that will really improve your health.  It can feel very overwhelming at first but just take one day at a time, you'll get there - as will your family.

Don't hesitate to start up a new thread if you have any particular questions.  There's lots of really good information on this website, and this in particularly is a good place to start (see link below).

Welcome to the forum!

Cristiana

Pam,

The best way to protect yourself from accidental gluten exposure and cross contamination in the home is for the rest of your family to commit to gluten free eating, at least when not dining out. The second best option would be to keep gluten free food items sequestered in a separate part of the kitchen or the house and make them off limits to others in the household. Make sure you are not using the same toaster as the rest of the family and make sure you do not use the same utensils that others are using to stir, serve or slice their gluten food until they have been thoroughly washed. And wash counter tops well.

Please hear this because it's important! You must not start eating gluten free until after your endoscopy/biopsy. If you do, you will invalidate the test. You must be on regular amounts of gluten for at least two weeks before that test.