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vvicin02

Recently Diagnosed with celiac disease Hard Time Dealing with Diet

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Hi, I am a male 60 years old and I recently went in for a check up and told the Doctor that a few years back my Ferritin levels were low and that I have on occasion been feeling bloated after eating with bad belching and some nausea in the middle of the night while sleeping - but not that often. He took some test and found my ferritin was 17 ( it was 7 at one time). He took an anti tissue transglutaminase test (iGa) and it came back abnormal at 190 which explains my low iron (lack of absorption). He said I had celiac disease and needed to change my Diet and go see a Gastroenterologists. My question is how are many of you are dealing with this diet and finding it discouraging. I love food and I have lived off sweets and pasta and all sorts of food my whole life. This is a real change for me. It sort of brings me down. Since my symptoms are not bad, it is hard to say that I really need this diet, but the numbers don't lie. Something is impacting my iron and iGa but it is hard and I know the long term impact could be bad if not treated. Any advice on to live with this?

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Hi, welcome to the forum! :)

There is a sticky thread at the top of the :Coping with" section called newbie 101.  It has advice on how to get started on the gluten-free diet and things to watch out for.  You are correct that the damage can be bad if celiac is left untreated.  But you may not realize all the symptoms you are having.  People can get used to feeling bad and not realize it can get better.

There are a lot of gluten-free alternative foods out there now.  Bread, cookies, cakes, donuts etc.  Plus quite a few restaurants that make gluten-free food also.  It's much easier to be gluten-free now than it was 10 years ago.

The best way to start eating gluten-free is to not go for all the processed gluten-free baked goods though.  Instead stick with meat and veggies, eggs, nuts, some fruit.  If you need sweetness try some stevia.  It's best to avoid carbs and sugar for a few months at least.  Celiac damage can cause gut damage and whacky gut flora.   That can cause bloating and pain when you eat carbs and sugars.

The gluten-free diet for a celiac does not include wheat, rye, and barley.  But some of us react to oats also.  Often people have trouble with dairy at the beginning of the gluten-free diet.  But that may resolve after a few months.  Celiac damages the gut lining villi that produce an enzyme that digests dairy.

The gluten-free diet can be a big change.  But if you stick with mostly whole foods you will have a better, healthier diet than 90% of the people out there.

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If you're going to go to a gastroenterologist for the endoscopy/biopsies do not stop eating gluten yet. After testing is done and your celiac diagnosis is confirmed here are some suggestions to get you started with the diet:

If you're currently on a meat, potato, and veggies diet then relax because this is gonna be easy. If not you might want to switch to a meat, veggies, and potatoes diet at least for a while.

So here's what I found out regarding food:

Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread:
  - Canyon bakehouse without question is the most realistic tasting bread. They have white, fake rye, multigrain and bagels (the bagels are fantastic).
  - Schar baguettes are decent.
  - Katz makes an English muffin that, after toasted, reminds me of a real one provided it has stuff on it like butter. I think that's the brand.
  - Etalia has a good boule if you prefer artisan bread. (Colorado)

Pizza crust:
    - Schar makes a good thick and chewy crust.
    - Udis makes a good thin and crispy crust.
    - Etalia makes a great New York crust. (Colorado)

Pasta:
    - Barilla makes the best pasta. Tastes like normal pasta. Spaghetti cooks the best.
    
Flour:
    - Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    - Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops.

Cookies:
    - Goodie Girl mint slims - fantastic girl scout mint cookie equivalent
    - Kinnikinnik makes a decent Oreo equivalent.
    - Kinnikinnik makes a good nilla wafer
    - Mi Del makes a great ginger snap.

Cake:
    - Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time exactly right. It is a very small window of time. Too long and it's too dry.
    - Udi's blueberry muffins after 8 seconds in the microwave are addicting
    - Katz chocolate donut holes are fabulous

Frozen meals:
    - Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Restaurants (not from personal experience, just from research)
    - Chinese – PF Changs. Employees are supposedly trained in gluten free.
    - Burgers – In N Out. The only thing here that is not gluten free are the buns so it is very easy for them to do gluten free. They are also trained in it. They are only out west. Road Trip!
    - Outback steakhouse. Employees are supposedly trained in gluten free. How good they are depends on where you live.

 

If you are willing to cook from scratch it's fairly easy to make a good gluten free equivalent to your favorite foods.

 

 

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Thank you tessa25. It is really appreciated. I checked into some of those products and it looks promising. 

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I was shocked when I got my diagnosis.  Anemia was my main symptom too. My GI suggested testing for celiac disease when I went for a routine colonoscopy (yep, over 50 years old).  I had no GI issues.  Two months after my diagnosis, I fractured my back (2 vertebrae) doing nothing!  Turns out celiac disease caused far more problems than I realized.  So, make sure you get routine follow-up care:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

I strongly recommend getting the endoscopy if you can (stay on gluten or talk about reintroducing it two weeks prior to the procedure).  It sets a good benchmark for follow-up testing, rules out other concurrent issues (e.g. SIBO, H. Pylori, cancer, etc.), and helps to eliminate doubt about your diagnosis.  

I have been gluten free for five years and my hubby for 17.  It is doable.  It just takes time!  You can get great advice here.  

 

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Thank you cyclinglady. My Doctor called me last night about meeting with a Dietitian (I think my insurance will not cover that). Although I have low ferritin (17) I am not anemic. He told me to stay off Gluten and still meet with the Gastroenterologists and see what he says.  I suppose if he wants to do more testing that is an option. I think he feels that my numbers are pretty strong indicator of celiac disease. Whatever the case this is a real change for me and my diet plan.

Last night I did not take tessa85's advice and had a baked potatoe (carb) with pork chops. The carbs did not sit well with me. I think carbs need to take a back seat for awhile. 

I really appreciate all your feedback. It has been helpful.

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Posted (edited)

Carbs do not sit well with me either, but that is because I have diabetes and my glucose meter is not happy when I consume too many carbs.  But carbs do not impact my celiac disease, gluten does.  However, a damaged gut will have trouble processing ANYTHING.  Our gut becomes “leaky” due to too much Zonulin leading to other various food intolerances that may or may not resolve with healing.  Watch this video about celiac disease, leaky gut and Zonulin which was discover by Dr. Fasano’s team.  He is a PED GI specializing in celiac disease.  One of the world’s leading experts in the field.

https://m.youtube.com/watch?v=wha30RSxE6w

When glutened, I go to easy-to-digest foods like soups and stews that I eat for breakfast, lunch and dinner.  It takes me a few weeks to be able to go back to my original gluten-free diet.  Sadly, I become temporarily lactose intolerance again but that soon resolves.  

 Celiac disease is autoimmune like lupus or rheumatoid arthritis except the trigger is known—gluten.  Once triggered the body starts attacking.  The duration varies from person to person.

You can skip the dietitian if you are willing to research the diet on the internet or head to your library.  

There is a grieving process.  I gave away all my baking pans. I used to even bake my own hamburger buns.  But I have learned to adapt and so will you.  Stick to naturally gluten-free foods as much as you can.  Give yourself time to forget what real bread tastes like and then start trying Tessa’s suggestions.  They will taste so good then!  

Edited by cyclinglady

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Grief is natural and something we have to get through and it was a few years for me. First i just stopped seeing fast food joints. To me they were empty lots. I stopped watching tv with commercials. Thank you Roku, Netflix, Amazon and HBO. Those helped. Dietitian didnt give me anything i didnt know. Read some Celiac and Nutrition books.  Things got easier when the hubby agreed the house should be gluten free. No cross contamination and no temptation. Love my crock pot and rice cooker ( going to buy an instant pot next). Hate to cook. Love fresh fruit. Steam veggies in glass bowls in microwave. Boil up dozen eggs always on hand. Found gluten free crackers and popcorn on Amazon. Just search gluten free. Key is to make a bunch of food then freeze it in meal sizes. Always having food cooked or fresh on hand helps cravings. And find favorite snacks to look forward to. All said and done the gluten-free non processed food diet has reversed my heat disease and lowered my diabeties risk. All bad numbers are normal and being 50 that is great.

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Thank you pikakegirl I really appreciate you sharing your experience. I am lucky my wife enjoys cooking and baking and baked me some awesome Gluten free chocolate chip and walnut cookies - very good. I am starting to adjust but part of me is not believing this is really happening. It is difficult to deal with and find it hard to tell anyone. For example, I play softball and after the game it is traditional for hot dogs or pizza and beer after the game. I cannot tell my teammates what has happened to me because I am a little embarrassed and fear that no one will take my situation seriously. I have to avoid eating and just drink water. I know it is a life change and part of me wants to believe that when I meet the Gastroenterologists next month he will tell me that my situation is not that bad. I know that is silly. Numbers don't lie. My anti-tissue at 190 and Ferritin at 17 indicates that something is not right. I need to look at this as a way to improve my overall health and longer quality life. My Dad died from multiple myeloma at 89 this past January and when the Doctors talk about iGa numbers I get a little nervous. Anyway - I want to thank everyone for sharing their thoughts. The youtube video was very helpful.

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@vvicin02— normal protocol is to remain on gluten until all testing is complete, even the endoscopy (so many primary care physicians do not know this).   I do not know your health provider (some health plans take up to a year to obtain an endoscopy (e.g. Canada) or  your financial issues), but you will need to be back on gluten a good solid two to four weeks prior to an endoscopy otherwise the GI  might see a healed healthy small intestine.  I say might because we all heal at different rates.  I put off my endoscopy for seven weeks due to work issues.  I took the time to bid a fond farewell to my favorite foods.   Just keep in mind the possibility of become sicker going back on gluten is very real.  Some people can not even complete the full two weeks or so.  

 

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    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
    • Yeah their shreds raw are nasty but melted in recipes they are decent, they make 2 different shreds a cutting board super stretchy version and a plain, they also sell that mac and cheese sauce by itself for use in other recipes. https://store.veganessentials.com/daiya-deluxe-cheeze-sauces-p5079.aspx The company makes a decent cream cheese and cheese cake also if you can stomach the xantham gum.

      I am going to copy and paste something from another thread thread and link you a list of alternatives. " Violife...makes vegan Feta...I have been dying to try their cheeses and hear good reviews. They also make other cheeses.
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      Kite Hill makes great Ricotta, the truffle cheese from them....yeah you will eat the whole thing in one sitting stuff is addictive,  decent cream cheese if you can stomach xantham gum (only one they have that has it).
      
      Miyoko Creamery makes great mozzarella and even a smoked version I hear they make great cream cheese and wheels also but I have not gotten any. Leaf Cuisines makes the best smoked gouda, and a strong garlic and herb cheese

      Tree line Scallion is glorious, and their garlic and herb is milder then Leaf cuisines but decent flavor...the peppered is meh.

      Daiya Blocks flavor wise are better then the shreds, the jalapeno Havarti is one my my dads favorites and he loves their cheddar...again xantham gum so not for me. Their cream cheese is decent but noticeable artificial. Their shreds come in 2 formulations a high melt version (cutting block) and standard I they taste better cooked into recieps over raw.
      Daiya recently started offering cheese sauces...like the stuff they used to sell with their mac&cheese but just the sauce.

      Lissanatti makes the best "raw" shreds for cheddar and mozz.

      Parma makes great Parmesan sub...the better then bacon one is SUPER addicting.

      I heard good reviews on so delicious cheese....but corn makes makes me not even able to do a chew and spit taste without an allergic reaction.

      I recently found a creamery you can contact about getting cheeses...I found their sauce on a site and got it.....great Alfredo sauce.
      http://www.parmelacreamery.com/
      https://www.luckyvitamin.com/m-28232-parmela-creamery
        Dairy Free cheese products  NOTE CHECK FOR GLUTEN FREE ON THEM
      https://store.veganessentials.com/cheese-alternatives-c6.aspx

      Other gluten free options for everything else  
    • Dairy is dairy on a elimination diet, your trying to void all the proteins, lactose, whey, casein, and the enzymes, hormones, pus, etc that could be setting off issues. I would even say wait at first on the dairy free alts. IF anything go with the fewest ingredients ones without starches or gums like the plain kite hills, tree line, leaf cuisines and miyoko. And completely sideline the crazy ones like daiya, or the blends of more then 2-4 ingredients.
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