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Diagnosed Last Night


AWebb85

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AWebb85 Newbie

Hey everyone, I'm Aaron. I am 25 and live in Glendale AZ. I am new to the Celiac Family. Today was difficult looking in my fridge and pantry and realizing I can't eat almost anything in either. Happy to have a place where I can connect with similar people.


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Dixiebell Contributor

Welcome to the forum! It is hard to start with but it will be second nature soon. Ask any questions you need. there are some very smart people here.

Emilushka Contributor

Hi! I'm also a relatively new member of the group. I got my results back on 9/10, and I've been gluten-free ever since. Almost a whole month.

My fiance eats gluten still. My strategy has been to separate our food out in the kitchen so that his food will not get crumbs on my food and I will have my own areas to maintain and stock. This means that I can easily see what I can and cannot eat, or what can and cannot go into something I am cooking. I find this really helpful.

If you're living with others who eat gluten, make sure you're not sharing nonstick pans, nonstick utensils, or wooden utensils. It's wise to invest in a rice cooker, your own toaster oven, and a good cast iron skillet (that will forever be gluten free).

My biggest recommendation: learn to cook WELL. If you can keep making tasty foods you like to eat, it'll feel like you're giving up a lot less. My sad days are when I think of what I can't have. My happy days are when I realize I just made something delicious that incidentally had no gluten - and it makes my body feel great to have the good stuff.

lucia Enthusiast

It's true what they say - the diet will fall into place for you after awhile. I went through the exact same process that you describe - going through my cupboards and ending up discouraged. I'd encourage you to take a look at the recipe section on the site and also maybe to search for "ideas for breakfast," "ideas for lunch," etc. It's helpful to draw on other people's experience when planning meals. Honestly, after a few months, I think the hardest thing about the gluten-free diet is eating outside of the house, but that's a whole other hurdle for you. Welcome!

AWebb85 Newbie

Thanks for the kind words and information. I am starting to see just how many gluten free options there really are out there. My fiance is being very considerate and is going to try to only eat gluten free, at least at home. I am feeling a lot better about the whole idea and am excited to finally start feeling better!

  • 2 weeks later...
Foxx Newbie

Thanks for the kind words and information. I am starting to see just how many gluten free options there really are out there. My fiance is being very considerate and is going to try to only eat gluten free, at least at home. I am feeling a lot better about the whole idea and am excited to finally start feeling better!

Welcome and, I am new here as well.

Wal-Mart has a list (on their site) that details all of the Gluten Free products they carry. Watch your mouthwash as well - Equate (by Wal-Mart) are processed on a line shared by gluten-based products; cross contamination is definitely a serous problem. Be sure to call the Mfg and ask for a product specialist.

Good Luck and keep your head up

  • 2 weeks later...
Rocknroll Celiac Newbie

Hey everyone, I'm Aaron. I am 25 and live in Glendale AZ. I am new to the Celiac Family. Today was difficult looking in my fridge and pantry and realizing I can't eat almost anything in either. Happy to have a place where I can connect with similar people.

Yo man, i found out i was celiac when i was 25 as well. It's pretty tough at the start, especially having to explain to people who are offering to have you over for dinner that you're allergic to basically everything. If you know how to cook, it starts becoming pretty cool to throw your own dinners and thanksgivings and things. What's really interesting is how much you'll find out that you have to cook ALL THE TIME. It's kind of time consuming, makes you wonder what life used to be like before fast foods!


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  • 5 weeks later...
dwillia75 Newbie

Hi and welcome! I was diagnosed when I was 50 after years and years of seeing specialists, having surgeries, and taking a LOT of medications. I never dreamed that the dreaded colonoscopy and endoscopy would have a benefit like this. I was in total shock (didn't know what gluten was) and had much to learn. Thanks to the Internet and some good books, I adjusted pretty easily. I almost immediately felt like a new and improved person once I quit eating gluten-foods. The health aspect outweighs my cravings for foods that I'll never eat again. Yes, I miss an occasional doughnut or biscuit, but Chebe, Open Original Shared Link and AllergyGrocer.com offer good gluten-free bread/pasta/homemade soup alternatives. I am going to take, after the holidays, a gluten-free cooking class at Viking Cooking School. I realize that I'm eating more fresh fruits and vegetables and not many gluten-free processed foods. They cost too much!

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    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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