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Getting Started On Gf Diet


dmckeithen

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dmckeithen Newbie

I have recently been diagnosed with Celiac Disease. I tried to do the diet and lasted only one month...got off of it and just can't make myself get back on. My only symptoms are anemia and bloating....just thoroughly depressed at the thought of having to do this the rest of my life. Does anyone have any suggestions to help me get back on track, change my thinking, perk up my sorry attitude? Even when I was trying, I found I had inadvertently eaten gluten....it's in EVERYTHING! (or so it seems). I don't mean to be so negative...but I am so very depressed about this. Any advice?


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Canadian Karen Community Regular

Please re-consider your thoughts on the gluten-free diet.

I have had diarrhea, gas, bloating, anemia, hypothyroidism, for years now. I was first diagnosed with celiac in my early 20's (I am now 41). After a year on the diet, with no change, the dr changed his diagnosis to Crohn's. The symptoms have never gone away..... I have been living half my life with this. Finally, 1 1/2 years ago, the blood test and biopsy confirmed, indeed it was Celiac Disease. But to this day, I still have not gotten rid of the symptoms, after 1 1/2 years on the diet. The dr. at my last visit brought up the possibility of "Refractory Celiac Disease". This terrified me. It scared me enough to do much more research than I had previously done. I have since learned that three things I continued to have had gluten in them -- also, I was sharing the same toaster as the rest of my family, utensils, pots, pans, etc. etc., indicating strong liklihood of cross-contamination. So now I am looking at it as though there is still a chance that I was continuing to be contaminated, and I am starting from scratch again. Of course, the alternative is accepting that it is refractory, and if you do any research on this, the prognosis is not good. That should be enough to scare you back into the gluten-free diet. It really is difficult, I admit that. I am a working mother, four young children, I am the only one celiac. Life gets crazy and hectic sometimes, and the possibility of slips are highly likely..... but just giving up and not even bothering is just going to cause you much more difficulty down the road.

Hugs to you, and I hope you look up refractory and learn what this disease can do to you.....

Karen

tarnalberry Community Regular

The diet isn't bad - once you get used to it. You've learned to cook WITH gluten for years and years, and if you rely on packaged products, learning to cook without it will certainly take longer than a few weeks. It's breaking a habit - and with all the tastiness in the gluten-filled products, it's a tough habit to break! :-)

Sticking with whole, unprocessed foods, and doing your own cooking makes it easier (not to mention healthier), and - depending on your cooking skills, which improve over time anyway - doesn't have to take much more time.

Don't forget that being depressed, and any tiredness that you may feel from the anemia, can also be connected to celiac, and sticking on the gluten-free diet for a while may help those symptoms as well. I know it's hard starting off... It looks like the whole world gets closed off to you, but with an effort, you start to realize how many things there are out there that you really can have. And there are some things you might never have tried before going gluten-free that you'll become aware of. (For me, it was rice cakes, millet (toasted, yum!), and quinoa.)

Pegster Apprentice

I was also very depressed when I got my diagnosis. I wasn't super sick- very minor symptoms. I was diagnosed by a dermatologist, not a GI doctor. But my dermatologist told me the gluten wasn't only causing annoying blisters to my elbows, but destroying my intestine in the process! It is a very difficult lifestyle change, but it is necessary for your health. If you keep visiting this site, you'll discover you're not alone. It takes hard work, a lot of research, and understanding from others. Good Luck!!!!

judy04 Rookie

Dear dmckeithen,

Please don't get off this diet! When I first started on this diet I was depressed,

frustated, confused, and mad at the world and everyone in it. Then I researched,

and found out what could happen if I didn't stay on it. I have seen too many

people with cancer, as a nurse, and I said to myself, I can do this, all i have

to do is learn this diet, which I have, thanks to this board, and other research.

I started to keep a journal, kept foods very simple. If I had an accident then

I could trace it back to find the offender. I learned that I also could not tolerate

dairy or tomatoes. I ate mostly chicken, mashed potatoes, rice, applesauce,

bananas, herb tea. For breakfast I usually have herbal tea, banana, scrambled egg

whites, or Van's Waffles. I bought a few gluten-free crackers with Progresso chicken

and wild rice soup, peanut butter and crackers, steamed rice with chicken

and celery and green beans. In the evening my husband usually grills a

steak, pork chops or chicken and we have baked potatoes. At night we

have strawberries, blueberries, with soy milk and my husband will have

Cool Whip. What I am trying to say is keep it simple. I have been able tonight

to have a delicious spaghetti dinner with meatballs and i didn't get sick.

It took me 6mos to get here but I did it and I'm glad I did...and you can too!

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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