Forum Replies Created
Struggling with Celiac? 41 Ways to Live a Better Life.
Cali Celiac February 14, 2019 at 3:14 pm #17595
Just saw this, nice to here from someone in Sacto. I’ve been GF for almost 2 1/2 years now and I’m also dairy free. CD is in general a not very well understood disease so it’s nice to have someone who understands without a lot of explanation the sort of issues you might be dealing with. It’s challenging to find truly safe GF items with so many GF bandwagon products on the market now. I try to stick to certified GF and do a lot of online research before adding any new products to my diet. Sadly, in spite of all that my Blood count levels are down and I’m anemic again. Switching oatmeal brands and dropping Kind products. Never ending!
I have found 5 restaurants that I trust: PF Changs in Roseville (I don’t trust them all); Pushkins (love the bakery); Red Baron (limited items, but safe); Pizza Rock (best GF pizza); Eriks Cafe Roseville (recently suspect they glutened me, so they’re a maybe). I have 1 friend who is allergic to wheat, but don’t personally know any others with CD.
You didn’t mention kids so I assume none? Mine are adults (more or less) and not living with me. Gotta go tie down my patio furniture now, wind is trying to blow them away. Thanks for reaching out.
CheersCali Celiac January 25, 2019 at 7:26 pm #17530
Dude, that’s a clear case of discrimination. If the job is worth it escalate to her boss and threaten legal action if you want to play hardball.
Then again, sounds like you are working for an asshole, so maybe better to find a different job. The food industry is not a good field for Celiac patients.Cali Celiac September 16, 2018 at 6:02 pm #17378
People can be so cruel. I work at a large production facility were company sponsored meals and potlucks are the norm. I usually don’t participate because it’s more trouble than it’s worth. I did recently take a class that was catered and the caterer prepared me a GF turkey wrap. It didn’t have gluten, unfortunately the sauce on it must have been dairy because it upset my stomach. Figures.
CD is not understood in America and most people who think they understand it don’t. If you told them you had benign skin cancer, benign, you’d get sympathy and good wishes. Tell them you have CD and you get “oh, that’s the wheat thing, right?” Many don’t even believe it’s a real disease because the water has become so muddied by the fad GF dieters and irresponsible marketing by food companies. I have tried to educate my coworkers about CD, but half the time I wind up alienating them or boring them. I don’t count on anyone except me for my food now, the risk isn’t worth it.Cali Celiac September 16, 2018 at 5:49 pm #17377
Greetings and sympathies,
CD is not fun! The symptoms and related medical issues are so many and varied it’s hard to make predictions. You have been diagnosed at a relatively young age, so I would guess that your prognosis is pretty good. I was diagnosed at age 57 after having symptoms all my life so my intestines are probably a mess. I have been GF for 2 years and I have improved significantly, but many symptoms persist and I still suffer from malabsorbtion (I take a lot of supplements). For me it took at least 6 months GF before I noticed a significant improvement (hopefully less for you given your circumstance), but I wasn’t taking all the supplements right away and that could be a factor.
Here’s my personal experience: My peripheral neuropathy (numbness in hands and feet) and ataxia have not improved, in fact have gotten worse (numbness traveling up my arms and legs now, dropping things a lot, stumbling and did a face dive at a public event recently). The depression and anxiety have improved, but mentally I’m still on a roller coaster with my moods swinging up and down and my short term memory is practically non-existent. The good news is the gut pain, bloating and gas have improved a lot. The migraines have also improved, as well as my energy levels and cognitive abilities.
You will have to stick to a strict GF diet and will most likely discover you have other foods that you have trouble digesting. They won’t make you sick like gluten, but they will have some adverse effects and slow down your recovery. Most frequent culprits seem to be dairy, corn and other grains, but I’ve read about many others. I personally have problems with dairy, legumes and eggs. I can eat just a little of these, but even then they tend to bloat me up with gas and intestinal swelling. I would suggest after being GF for a few months to try some elimination diets to see what other foods you might need to avoid. Good Luck.
CheersCali Celiac January 10, 2018 at 9:58 am #17041
Thanks for responding Lee. I was feeling overwhelmed by depression and the soap opera that is my life. I am scheduled to see a mental health counselor Jan. 22 (first appt. I could get with my health care provider, Kaiser). I have resisted going on meds for depression because my symptoms seem to vary so much over time and I just don’t like feeling “drugged”, but may have to reconsider that. I have been doing better since that post, but Christmas was difficult. My brother is out of prison after 9 1/2 years (white collar crime) and moved in with my mother this summer which infuriated my stepfather. He became abusive so we had to move my mother and brother from her home on a farm to an apartment. Circumstances have dramatically changed the holiday traditions at both mine and my mother’s house in the last 2 years making for a rather somber Christmas. I’m relieved to get past the holiday season.
Looking forward to a new year and a trying to start a new chapter in my life, hopefully find a new job. I’m lonely and would like to find someone to love, but finding myself suddenly single after 35 years and with CD I’m not sure how how to proceed. Thanks for the support.Cali Celiac September 24, 2017 at 4:14 pm #16849
Steph, sounds awesome! Glad you had a great time. I always find time in the wilderness inspiring and uplifting, even better when shared with friends. Food for us will always be challenge.
My camping trip was a bit of an adventure. My favorite campground was closed for the first time in 20 years due to so much snow and rain this season so drove through intermittent thundershowers to Silver lake. Ate a quick snack for lunch and was just finishing putting up my tent when it began to hail marble sized hail. That changed to small hail which came down until the ground and trees were covered and it looked like it had snowed. I wanted to take pics, but I was trapped in my tent with the camera gear in the car. Then it rained. And rained, and rained like crazy. After watching the rain pour down for a while I realized I hadn’t built a trench around my tent and sure enough there was a small river flowing out from under my tent at the door. 30 minutes of trenching and hydrology work later I made it back into the tent drenched, hungry and exhausted. It rained another hour, about 4 hours total. I changed clothes and fell asleep, waking after 6:00 pm, the rain finally done and realizing I still needed to finish setting up camp and fix dinner. I grilled up a steak, washed it down with a GF beer and celebrated my adventure with a shot of fine tequila by the fire.
Thankfully, the rest of the trip was rain free, spent enjoying the mountain views, the eagles overhead and the gentle breezes whispering through the pine trees. The time alone there allows me to clear my mind of the clutter of life, unwind and reflect in ways I can’t at home.
I just registered on Instagram and I’m planning on posting some pics of my camping trip and Yosemite trip. I have some great shots of the falls. I will post a link here when I get my stuff together.
SlainteCali Celiac September 24, 2017 at 3:42 pm #16848
Had a colonoscopy last year=clean. The blood is more black and tarry. So far have had four episodes, but spaced out over several months. I’ve lost 35 pounds the last year and my weight continues to gradually decline, but I’ve also been GF the last year so, who knows. My intestines are still swollen and bloated all the time so trying to focus on reducing grains and increasing vegies and fruits in my diet (already dairy free) and trying to keep my spirits up and not let the Foggy Brain Blues overtake me!
Thanks Lee.Cali Celiac September 24, 2017 at 3:12 pm #16847
“…a lot of medical professionals … are pretty much clue-less about celiac dz.” Indeed!. Sadly, that’s been my experience. My HMO nutritionist main qualification in her mind, which she couldn’t wait to share, was that her and her husband had been on a GF diet for almost a year. She was clueless and no help at all. I could share more sordid stories, but I know you’ve seen plenty. Thanks again for your support. Have a Grand Day!
RonCali Celiac September 21, 2017 at 3:28 pm #16833
Thanks Lee. I couldn’t find anything on them. I think I’ll just stick to my current resources.
I’ve noticed that you respond to a lot of peoples posts here and I think that’s commendable. Sometimes someone who is really needing a little support can post and nobody responds. I know how much it has meant to me in the past to know I’m not alone and to correspond with somebody who understands and I’m sure plenty of others appreciate it as well. Thanks again. Slainte!
Cali CeliacCali Celiac September 17, 2017 at 5:09 pm #16804
Do you know who created it and how the list is compiled? I don’t trust anything until I have some confirmation when it comes to gluten and food. There is a lot of food that claims to be gluten free, but isn’t certified and I won’t touch it. Since I already shop with my phone out to look up products it sounds like a great app, just need to know that the food is not just ‘GF’, but Celiac cafe.Cali Celiac August 14, 2017 at 9:46 am #16696
FYI-You can take the stove on a plane, but it must be drained of fuel and aired out so it doesn’t smell like gas. You can buy fuel at most destinations. REI s your best bet for meals ready to go. I usually pack a lot of crackers, cheese, beef jerky, nuts, energy bars, etc. when doing a meal without using the stove. I’m leaving to go camping on Weds. at Woods lake, 8,000 feet, small lake, small camp, out of the way, quiet, beautiful. Can’t wait to escape the heat and the hectic lifestyle for a few days.Cali Celiac May 23, 2017 at 7:56 pm #16272
I would really love to do something like that. I grew up in the Fresno area (in Sacto area now) and have always loved the mountains. There is nothing like the high sierras. I would be interested in hearing how your trip goes, both the mountain experience and how the GF part goes. BTW, where are you going backpacking? I went to Yosemite last Thursday and Friday. It was awesome, the falls are cooking. Even Ribbon falls and Staircase falls are flowing great. Bridal veil and Yosemite are flowing more than I’ve ever seen.
Would you be interested in sharing contact info? I have tried to find a support group or something like that for Celiacs here, but have had no luck. Seems like we have some things in common. If your interested the Dude can help us connect.
CheersCali Celiac May 15, 2017 at 11:15 am #16261
This is probalby too late, but just in case here goes:
You’re not weird. I have the same issues. Here’s my take on it. I work a compressed work week which means I work 3 or 4 12 hour days in a row then have 3 or 4 off. By the end of my work week I’m so depleted that I sleep at least half of my first day off. We are suffering from malabsorbtion so we can’t get enough calories and nutrients from the food we eat to keep up with our metabolism. I found taking B12 helped with my energy levels . I’m also taking B6, iron and a multivitamin. As your intestines heal your ability to absorb should improve and with it your energy levels. Yes, stress can aggravate your symptoms.
CheersCali Celiac May 15, 2017 at 10:56 am #16259
If you have a dehydrator you can make your own backpacking food like what they sell only you control the ingredients. You can also dehydrate in the oven. There are recipes and how to’s on dehydrating food online if you want to go that route. Be careful with freeze dried backpacking meals-they put all kinds of stuff in them for protein and filler so read labels thoroughly.
Nuts and dried fruit are easy and a good source of protein and sugar respectively. GF energy bars like Kind bars are good between meal snacks. Real bacon bits are great for improving the taste and protein content of other foods (once opened they will keep for a couple days at room temp just fine). No dairy makes it harder, since cheese and butter are good items. You can premix GF oatmeal for breakfast and then just add water and boil. (I add cinnamon, brown sugar, salt and sometimes chopped pecans). GF instant soup mixes and instant mashed potatoes are light, filling, easy and quick to make. Drink lots of water and if you are going to be at higher elevations drink even more because you will aspirate more with the thinner, drier air. Along with beef jerky you can also have salami, beef stick and summer sausage.
Writing this has me missing the high country, alpine meadows, towering trees, granite cliffs, blue skies, wildlife and virtually no people or technology, but I don’t think I’m up to a backpacking trip yet. I’ve only been GF for 9 months and I’m just starting to see some improvement with my symptoms. I’m going to Yosemite for a couple days later this week which I’m really looking forward to (the falls are awesome this year), but I’m missing the wilderness experience. I hope you have a great time.
Cali Celiac May 3, 2017 at 8:54 pm #16230
- This reply was modified 3 years, 3 months ago by Cali Celiac.
I have found the depression, along with anxiety and cognitive issues to be especially problematic. Hard to maintain a good attitude and make smart decisions when your heads messed up, but it gets better. Don’t recommend you go food shopping when in a heavy brain fog-long story short I glutened myself really bad that way.Cali Celiac April 2, 2017 at 6:53 pm #15972
Keep hitting him with more facts about Celiacs and personal stories like those found at this website. Sounds like he’s in denial and needs a reality check. Sometimes people refuse to believe uncomfortable truths, but eventually most people learn to accept and adapt. Stay strong and remember the gluten eating is temporary (10 weeks seems excessive to me, but I’m not a doctor).
CheersCali Celiac April 2, 2017 at 6:45 pm #15971
These links are not related to the original commenters problem and probably belong in a different thread. That being said I will continue the discussion. There is a roaring debate about Roundup, GMO’s and wheat, but if you are a Celiac you should already be wheat free. Does Roundup cause Celiacs? No definitive proof to date, but Celiacs disease has definitely been around since before Roundup and GMO’s and it’s been proven to be hereditary, which would tend to rule it out. Could it cause increased sensitivity? Maybe, but not proven yet. And what about the thousands of other chemicals like BPA we have put into our environment? Maybe they are causing increased rates. Or maybe increased awareness has lead to the sharp increase in Celiacs. More science is needed to understand the relationship of Roundup, GMO’s and other chemicals as they relate to Celiacs and other diseases. A chart showing increased rates of celiacs corresponding to increased usage of Roundup doesn’t prove a direct correlation, let alone the mechanism for how that would happen. I think avoiding any chemicals whenever possible is prudent and Monsanto is the poster child for corporate malfeasance and disregard for human health and should not be trusted. America has the most chemically altered and abused food in the world, thanks largely to the fact that the FDA’s main purpose for existing is to help food manufacturers sell more products, not to protect consumers.
Stay critical of chemicals, write your congressperson and spread knowledge where appropriate, but when someone writes about a personal issue with Celiacs and their spouse they are seeking solace and advice. Don’t tell them Roundup caused their disease, it’s not helpful and downplays their problem.
CheersCali Celiac April 2, 2017 at 5:44 pm #15970
I glutened myself really bad in late January (2 Gluten waffles each on 3 out of 4 days) and last week was the first week since that my energy levels were close to normal (whatever normal is). The worst of the physical symptoms got better after a month, but the fatigue and brain fog were more persistent. Maybe an extreme case, but it raised the question how to shop right when your heads in a fog.Cali Celiac January 16, 2017 at 10:38 am #15776
I was DX last summer and I’m pretty new to this, but here’s a list of web sites, besides this one (which I’ve found to be very supportive) that I found helpful: http://www.beyondceliac.org/; https://celiac.org/ (they have a good list of symptoms and related medical info); https://simplygluten-free.com/; http://glutenfreeeasily.com/. For medical info I’ve also used http://www.webmd.com and http://www.mayoclinic.org. I found GF shopping difficult at first, trying to figure out if something is truly safe or not, but You can goggle any food product (Ex: is Almost Love Gf oatmeal gluten free) and usually multiple websites will pop up with info. Be sure to check any meds, including over the counter, vitamins and supplements for gluten. This is harder than food items because drug manufacturers are not required to put inactive ingredients on their labels (although some do) so you may have to do web research, ask your pharmacists or contact the manufacturer. Hope this is helpful and good luck!Cali Celiac January 11, 2017 at 4:03 pm #15770
Absolutely do not drink Pabst Blue Ribbon or any other beer except gluten free. All non gluten free beers use malt which contains gluten. There are a few beers (Omission is the most popular) that use enzymes that supposedly break down the gluten, but so far I haven’t found any celiacs who have tried it without reacting. Greens and Glutenberg are the best I’ve found. Bud makes one called Redbridge and there’s Bards (didn’t like it). If you like Bud you may like the Redbridge. I also drink New Grist which is a pilsner (its also a lot cheaper than Greens or Glutenberg) and I just bought a new on called Unita, but I haven’t tried it yet. Good Luck!