Jump to content
  • 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

So New To This Celiac Thing


Bethe444

Recommended Posts

Bethe444 Newbie

I'm 41 years old and FINALLY had a diagnosis of Celiac Disease. For years the doc's said IBS and lactose intolerance. A few years ago my gliadin test were abnormal, but not my biopsy. Now, new tests Iga and Igg were positive. I also tested positive for B12 deficiency and anemia (malabsorption), and thyroid problems. I'm average in weight exept for the belly bloat. For the life of me I could never understand why so bloated, sick to my stomach, fatigue, irratibility, slightly depressed and weak. Now I know. However, this diet is so hard. I've been a carb addict my entire life -- now I know why I felt like I did for so long.

I'm still waiting for genetic tests to come back, but it is pretty evident that Celiac is the case. Today was not good. My husband and I ate Taco Bell. I thought a simple taco -- corn shell, cheese, beef and tomatoes would be okay. Little did I know that the beef had a ton of gluten in it. Later during the day I became very fatigued, really -- really moody (Like having a breakdown moody). I mowed the lawn and struggled like I had the flu, weak, and could barely do it. So here I am looking for support. I think I'm a pretty smart person, my husband was a Chef for many years and understands gluten free (thanks for the Taco Bell honey). So I thought I could handle this myself but I can't. I do not know anyone that has celiac. (I think my grandmother had it, and I think she died from it -- she had non-Hodgkins Lymphoma late in life, stomach issues and a HUGE gut, but small frame).

Anyhow, I'm just looking for a little support and any advise would be great too. I have found a few places like Meijer and Whole Foods that have a good variety of products. But what does a gluten tolerant person with a busy career and family life eat on the go? Ugghhh! I'll eventially get it! :D

Thanks for Reading. Hope to hear from someone.


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



Celiac.com Sponsor (A8-M):



rosyrear1 Newbie

I was diagnosed with celiac disease in January of this year. I have 5 young kids (7, 6, 4, 3 and 2) and I am married. When they told me what I have and what I had to do I almost laughed in the doctors face thinking ya right! I started reading anything I could find about celiac disease and even went to a nutritianist/dietician to try to get help. I work full time and don't get home to feed my family until around 8 at night so need the food to be fast. I found myself having to cook one thing for my kids and husband and try not to take any nibbles then try to find something that I could eat that I would like. By the way, I HATE rice! So, I would try to have potatoes and some blandly flavored chicken that I had made up before if my kids didn't eat it while I was at work. I think I may have made it 1 full week before deciding it was too hard. I was having temptation at work since they provide breakfast and lunch on a regular basis, I was having temptation at home because no one that doesn't have to go gluten free wants to go gluten free. I sit here wondering if I really have this problem because everything I read has people that are thin and getting thinner. I am very large, have always been very overweight and not losing any weight only gaining. I was actually thinking that if I eat the gluten and I stop absorbing nutrients maybe I will finally lose weight. I guess I wanted to write on here and see if anyone has any suggestions that may help me out with all of this. As of right now I have given up.

Roda Rising Star

I'm sorry that both of you are having a hard time. You will have a period of emotional adjustment. I work full time on night shift (12 hr shifts) and I do know how hard it can be to have to cook every night. Thankfully I already made majority of our meals at home. My husband will cook some also. The time it gets frustrating for me is when I get off from work in the morning, sleep about 3-4 hrs, and get up for the rest of the day when I'm off that night. The last thing I want to do is cook in my sleep deprived state. Before I would just order in a pizza or get take out. Sometimes my husband and boys still do that and I fend for myself. Most of the time I only cook one meal for all of us for supper, with the exception if we are having pasta. Then I cook two seperate pastas but we all eat the same sauce, meatballs etc. Breakfast is whatever anyone wants, and sometimes lunch is the same and sometimes not. Supper is the meal I don't compromise on. All my baking, cookies cakes, brownies etc are all made gluten free. If the rest of the family wants "gluten versions" of those things, they either buy it or eat it at other places. Most of what I liked to cook before has been easily converted to gluten free or already was. The family does not seem to mind at all.

Things you can prepare in a crock pot and start before work on low should be ready for supper. Keeping bonless chicken breasts or pork and frozen stirfry veggies on hand is good as a quick stirfry supper. Another thing I like to do is when I make soup I make extra and freeze it in individual serving containers for me later. I have been known to take a day and just cook and bake and freeze the extras. Pancakes, muffins and other baked goods freeze well. We like to have breakfast for supper and will have that as a meal and is fairly quick to whip up. To keep baking simple I have found I like the gluten free flours that you just substitute cup for cup for regular flour. Just remember, you may have to increase the liquids a little since gluten free flours in stuff can get a little thicker. Tom Sawyer and Better Batter are two kinds, but there are others.

As for quick things for on the go or for me and the kids at home I keep on hand a ready supply of fresh fruits and veggies like carrots, apples, cucumbers and bananas. I also keep a varity of canned fruit in the pantry along with peanut butter, jelly and marshmallow fluff. My fridge always has yogurt, cottage cheese, cheese sticks, and deli meat/cheese that the kids and I can grab as a quick lunch or snack. Rice cakes, cornthins, and nut thins (crackers) are good to keep on hand. Humus is also another quick thing you can either buy or make.

Your kids probably will come around and be more willing to try things. My boys are 8 and 4 and they see me eating things and want to try it. Sometimes they don't like it, but alot they do. We love to make psudo pizzas out of rice cakes. Just take a rice cake top it with mozzerela cheese and pepperoni and put in the microwave until melted. UMM GOOD!

Sorry this is so long, but I hope it helps!

PS. For those who hate or can't eat rice there are alot of other grains/psudo grains that are very nutritios and good. Quinoa, millet, and buckwheat are a few I have tried. I have a recipe for peruvian quinoa stew that is fabulous.

mushroom Proficient

A big welcome to you both.

First of all, take a big breath and let it out. It's really not that bad, just a bit overwhelming at first until you get the hang of it.

Next, Rosy, you are going to have to try to get your family to work with you on this. You can't be cooking two meals every night, you'll exhaust yourself. Set up some rules and make them follow them. If you set aside a shelf for yourself in the refrigerator, NOBODY is allowed to touch that food except you! Get yourself a separate toaster, frying pan, utensils, and again, a separate space for these things so they don't get contaminated. A separate part of the counter no one else is allowed to use. It will be hard with the little ones, but they can learn.

Next, while you get started your family is going to have to eat simple meals. Most meat, (don't buy anything pre-seasoned or pre-prepared in any way), fish, vegetables, fruit, rice (pity you can't eat it Rosy) is all gluten free. These will form the backbone of your meals. The family can season things up if they want after you have cooked them, or you can season them with gluten free seasonings.

But you will be surprised how many of the gluten free things your family will end up liking. Just don't tell them that it's gluten free. Many members here have families who prefer gluten free. Use the weekends to roast a couple of chickens or make a big stew or a large quantity of whatever your family eats, gluten free pasta sauce, e.g. And then you can have roast chicken on the weekend, chicken salad or something else during the week. The important thing is to keep it simple at first. You can cook separate pasta at first for them, and slip them some Tinkyada one night without telling them, see if they know the difference. But you have to get your husband to help you and support you in this. It is just TOO important for your health. It is not something you have an option about.

Rosy, there are a lot of overweight celiacs; I was one of them. Your body seems to go into conservation mode and store everything because it's not getting the nutrients it needs. When you go fully gluten free you will probably be really surprised at the weight you lose. It's eating the gluten that is making you gain. For others, of course, it is the reverse, the so-called "classic" celiac.

There are lots of people on where who are whizzes at planning out menus for the week who I am sure will chime in and help you out. Rissa Roo is one of them; check her out. Check the recipe thread on here, there are some great ideas and subjects.

Beth, eating on the go is the hardest part because so little takeway food is gluten free. Always keep gluten free food/snacks in your car, your purse, at work, because you are always going to find yourself hungry with nothing around you can eat. Others will post lists of safe foods for you, I'm sorry I don't know them. But always have something like a Lara Bar handy for emergencies, bring dinner leftovers for lunch at work.

I can see, Rosy, that you are constantly being surrounded with temptation that you will have to resist. But you must do it. Same advice as Beth, always have something with you that you can eat instead and be strong!

Good luck to you both, you CAN do this.

Amy Joe Rookie

I am also NEW, did my first grocery trip this week. I stuck to the outer isles first....fresh foods! Then wandered down the cereal and found 3 chex's that are gluten-free. Bought a couple gluten-free flour mixes and made my own bread, have it in the fridge and will last me a week. I found ALL corn soft taco shells in the dairy section and they make great small sandwich wraps!

I am day 4 being gluten-free. Last night was my first night in 5 years I went to bed TOTALLY drug free, I needed nothing! My tummy feels better with regards to a rock hard gas pouch.

I know it must be hard, working full time with a family. Mine is grown and gone and I am not working yet, still recovering from brain surgery. I just take the "Normal" menu, found the few replacement ingredients for me.

I think for me I have a very different view of this. Because of the brain surgery and what I went through before it.....to me this is dealable! If it will STOP the fatigue and helps my body heal, I'll get over this hurdle. All changes are hard at first. I used to work 60-70 hours per week, lived in a big house in a richer town.........it's all material when you come down to it! Your health is priceless!

You only have 1 life........it's not a rehearsal. This is it! My new motto!!!!

I was actually glad to get the Dx of Celiac and not some other weird rare disease that would need surgery or harsh drugs. Food! I can do this....I hope you can too!

Amy Joe

Wenmin Enthusiast

Here is a partial listing of Gluten Free Mainstream food products that was very helpful to me. It is quite outdated but was my "bible" when I was diagnosed back in July 2008. I still refer to it today in some cases. Please don't try to find "all" of these items at once, it will make you crazy. Instead, pick 2-3 items a week that you are craving and find those in a grocery store. In just a few weeks, you will be enjoying life and feeling a whole lot better!

homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Hope this helps!

heatherjane Contributor

If you haven't already, try to find a local support group in your area. I've been going to the one in my city, and the people there are really nice and very encouraging. Although this online forum has been a lifesaver for me, I think the best thing for me has been meeting people in person who've been dealing with this disease for decades longer than I have...gives me the strength to fight another day. Plus, my support group has monthly pot lucks. Everything there is safe (obviously), so I can eat with freedom and enjoy it. :)


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,949
    • Most Online (within 30 mins)
      7,748

    Stephanie94
    Newest Member
    Stephanie94
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.