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

Just Diagnosed


jess-gf

Recommended Posts

jess-gf Explorer

Hi,

I am 28 and for years I've always had stomach "issues" that I just chalked up to stress. This past year though it was getting steadily worse, and for the past couple of months I was having stomach pains and nausea every day, all day long.

Yesterday I had an endoscopy and biopsy and my GI specialist said that I have Celiac Disease. I'm starting my research on it and I am feeling completely overwhelmed. A few hours ago I went through my cupboard and cleaned out everything containing gluten... not much left! I love to drink tea and now that I know that some tea bags are sealed with wheat paste I don't even feel safe drinking that!

I am also concerned because I've been meat-free for about 10 years, but I am not sure I can continue to be and still be healthy with my diet so restricted and so many non-meat sources of protein having to be taken out.

I'm not really sure where to go or what to do or how to start. There's just so much to research and recipes to find... and the holidays! I am supposed to bring something for thanksgiving dinner next week and I haven't the foggiest on what to make, considering whatever I make might be the only food option I can eat there. Eeeeek!

When someone first learns that they have Celiac, what are the first things they should do? Do I need to start eating meat?


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi,

Welcome to our glorious club of gluten freedom fighters! Really, if I was you, I'd forget about doing the gluten-free diet until after Thanksgiving. Then start and go from there. As far as eating meat goes, I'd say yes, eat the meat. Celiacs have a hard enough time absorbing nutrients that some rich protein can be a help. I have been taking vit D pills for a couple years and the doc says I am still low on it.

Skylark Collaborator

Hi there. Don't panic.

For starters, you can fish your teabags out of the trash because the wheat paste thing is an urban legend. You do need to replace your cutting board, since it's hard to clean well, any wooden spoons, and perhaps your colander. If you have a vertical toaster you can't clean really well, you'll need to replace that as well.

You have not had many non-meat sources of protein taken out. Just the various fake meats and seitan. I've actually been moving away from meat myself and I've been gluten-free for years. You can still eat tofu, tempeh, eggs, nuts, seeds, beans, and dairy once you're sure you tolerate it. Now, if you end up sensitive to soy and/or dairy like some celiacs you might find it easier to add some meat to your diet. We also tend to be low on B12 so be sure you're taking some if you weren't already.

Start really simple at the store. Remember, most natural, whole foods are gluten free. Get some fruits, veggies, beans to cook, tofu, rice, eggs, and potatoes. Herbs and spices are fine, as long as you stay away from the seasoning mixes. If you have somewhere in town that carries Udi's bread, buy a loaf. It's really good. You WILL have to cook more than you might be accustomed to. I usually do pots of homemade bean soups on the weekend, or baked rice penne that I can cut up and freeze to take for lunch at work. I have a rice cooker too, and I almost always have some leftover rice around to eat with whatever I'm cooking.

For Thanksgiving, I assume you're skipping the turkey. I might volunteer to bring more than one thing, so that I enjoy the meal more. I often make garlic mashed potatoes or twice-baked potatoes, a cooked vegetable, and some baked apples with cinnamon. I could eat that happily enough with no other foods. Cornbread stuffing is another good thing to make, though I usually make mine with sausage and chicken broth.

Hope this helps, and ask as many questions as you need. Above all, don't panic. Lots and lots of foods are naturally gluten-free and you'll start remembering how many when you head for the produce aisle in the grocery store.

sahm-i-am Apprentice

Hi jess, and welcome! It can be so overwhelming - I remember when I was first told to go gluten-free after my endoscopy I was having a dinner party that night at my house! :blink: Don't expect to learn it all overnight. I am gluten-free for 7 months and I'm still learning. There are so many wonderful people on this site and you will learn more hear than from any doctor.

You don't have to eat meat to be a healthy Celiac. There are so many other ways to get protein in your diet without that. Sorry I can't offer specific advice, but I'm sure others will chime in with more knowledge than I have on that subject.

For Thanksgiving you could take a sweet potato dish to share or even pick up some rolls for the others. What about a fruit salad or veggie plate? But I would recommend making a plate of food at home for you to eat at their house. That is what I'm doing: I'm making my traditions that I love to eat and taking them with me to each family we are visiting. That way I can still have the foods I love and not feel deprived AND not worry about getting gluten in my diet.

Don't think about what you can't eat any more - think about what you can still eat! There are so many options! Good luck and have a great Thanksgiving.

jess-gf Explorer

Thanks for the responses so far!

My brain is telling me that I ought to eat meat since I do have problems with dairy (and soymilk gives me gas, all brands) and even goat milk can be troublesome. I also suspect I have been malnourished because, as my hair stylist noticed, I've lost about.. 20% or so of my hair in under a year.

But my heart is saying no :(

I am thinking about seeing a nutritionist/dietician that is affiliated with my GI specialist.. but I'm not sure if insurance will cover that and I also don't know if she will have time for an appt before the holidays.

starrytrekchic Apprentice

Hi! We're actually kind of similar. I was 29 last November when I found out about Celiac, after 11 years of stomach problems and a year of it getting steadily worse until it was a daily thing--and I'd been vegetarian since age 16. The first few weeks are difficult, especially trying to learn everything (you will make mistakes, but that's expected.)

I've had no problems being veggie and on the gluten-free diet. As far as I'm concerned, meat's just one less potential source of glutening that I have to worry about. Don't worry about your teabags, either--that's a myth. However, you will need to check your tea ingredients, including natural flavors. I was glutened by some Tazo green ginger tea a few weeks ago, because I never thought to check it.

Keep reading, keep educating yourself, and you'll be fine. As for Thanksgiving, try homemade mashed potatoes, a salad, pea salad, or dessert. You may need to go easy on the gluten-free replacements foods (like non-wheat flour bread) until you've healed some.

sb2178 Enthusiast

If you are fine eating nuts/seeds, tofu, eggs and beans, you do not need to add in meat.

I found, after having to cut out dairy and peanut butter, that I really needed to add back in meat/fish as a regular part of my diet. (Wasn't veg, just brought up that way and rarely cooked meat at home.) Just the beans and lentils weren't quite cutting it in terms of calories and I was sick of adding olive oil in generous amounts to everything. It was also easier to digest in the beginning when I was having problems with all sorts of things.

Make sure you consume some protein on TG, whether it's a couple of hardboiled eggs or hummus or lentil salad... Definitely take your own. I'm planning to travel on Tuesday and take with me:

safe oatmeal

cornbread

apple crisp topping

cookies or brownies

trail mix

pasta

At my aunt's, they'll very carefully prepare:

crudites

steamed veg

mashed potato with turnip

turkey

Other days:

shrimp risotto

mexican pizzas (corn tortillas, beans, salsa etc)

eggs or tuna

It's entirely possible that something will become contaminated, but I'm a person without a car so taking what I'm taking is about my max. I will buy a few things there, and the bread-y foods will be made the day before the turkey.

Your insurance should cover an RD consult; if not, consider paying for it. You might be able to find someone who will take installments or who has a sliding scale if you ask around. If you can't, we here may be able to throw assorted advice in your direction. Good resources are also on GIG website as well as here.


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



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

It is very overwhelming at first. I had a panic attack and ran out of the store leaving a full shopping cart behind and hyperventilated in my car the first time I shopped after diagnosis. I barely made it home from the dizziness and cried for like an hour.

In my opinion, you need to eat meat. Sorry! With dairy and soy out for you, and your body needing to heal going meatless will be very hard. Beans are going to be tough on your wounded digestive system right now and you will have a tough time getting enough protein. You will be slowing down your healing in my opinion and it's not worth it.

Eat a clean diet for the first couple of months so your body can heal. Don't go nuts eating gluten free sub foods.

If you can get one good bread, a good pasta and a sweet treat that will get you on the right path. You can venture out and try more things later.

Here are my suggestions.

Gluten Free Pantry Basic White Bread mix. Excellent taste, easy to make and doesn't fall apart. Actually makes a real sandwich!

Arrowhead Mills Gluten free all purpose baking mix for pancakes (1 cup mix, 1 cup almond milk, 1 egg, 1 tbsp oil for pancakes)

Tinkyada pasta

Betty Crocker chocolate chip cookies. MUST use real butter to make them taste good.

Here is a flourless cookie recipe that kept me going in the beginning.

1 cup peanut butter

1 cup sugar

1 tsp baking powder

1 egg

Mix and form into balls. Flatten balls of dough on cookie sheet. Bake 350 for 10 minutes until they just start to brown. Let them cool before eating or they fall apart.

Hope this helps!

For TG ask them not to put stuffing in the turkey.

Judy3 Contributor

It is very overwhelming at first. I had a panic attack and ran out of the store leaving a full shopping cart behind and hyperventilated in my car the first time I shopped after diagnosis. I barely made it home from the dizziness and cried for like an hour.

In my opinion, you need to eat meat. Sorry! With dairy and soy out for you, and your body needing to heal going meatless will be very hard. Beans are going to be tough on your wounded digestive system right now and you will have a tough time getting enough protein. You will be slowing down your healing in my opinion and it's not worth it.

Eat a clean diet for the first couple of months so your body can heal. Don't go nuts eating gluten free sub foods.

If you can get one good bread, a good pasta and a sweet treat that will get you on the right path. You can venture out and try more things later.

Here are my suggestions.

Gluten Free Pantry Basic White Bread mix. Excellent taste, easy to make and doesn't fall apart. Actually makes a real sandwich!

Arrowhead Mills Gluten free all purpose baking mix for pancakes (1 cup mix, 1 cup almond milk, 1 egg, 1 tbsp oil for pancakes)

Tinkyada pasta

Betty Crocker chocolate chip cookies. MUST use real butter to make them taste good.

Here is a flourless cookie recipe that kept me going in the beginning.

1 cup peanut butter

1 cup sugar

1 tsp baking powder

1 egg

Mix and form into balls. Flatten balls of dough on cookie sheet. Bake 350 for 10 minutes until they just start to brown. Let them cool before eating or they fall apart.

Hope this helps!

For TG ask them not to put stuffing in the turkey.

Thank you for this message and the cookie recipe. I'm new to this too and the first week I was like a soldier... I CAN DO ANYTHING lol but now that the newness and maybe fear has worn off a bit, I'm needing help to find things to eat.. I know the whole foods, we were eating those before celiac came along but replacing the pasta, cereal and bread has been interesting. Rice/corn pasta ACKKK Gluten free bread (found Udi's white sandwich bread last night (will take some getting used to it melts instead of chewing it. ewww can't have the whole grain one allergic to flax :() Ahh I will survive... Lost 4 more lbs this week though and I've been eating... is that why the 'stars' go gluten free to lose weight quickly? I've lost 25 lbs in a about 5 weeks. only been on gluten-free for 2 but it's still falling off even though I'm eating now. :unsure:

jess-gf Explorer

It is very overwhelming at first. I had a panic attack and ran out of the store leaving a full shopping cart behind and hyperventilated in my car the first time I shopped after diagnosis. I barely made it home from the dizziness and cried for like an hour.

In my opinion, you need to eat meat. Sorry! With dairy and soy out for you, and your body needing to heal going meatless will be very hard. Beans are going to be tough on your wounded digestive system right now and you will have a tough time getting enough protein. You will be slowing down your healing in my opinion and it's not worth it.

Eat a clean diet for the first couple of months so your body can heal. Don't go nuts eating gluten free sub foods.

If you can get one good bread, a good pasta and a sweet treat that will get you on the right path. You can venture out and try more things later.

Here are my suggestions.

Gluten Free Pantry Basic White Bread mix. Excellent taste, easy to make and doesn't fall apart. Actually makes a real sandwich!

Arrowhead Mills Gluten free all purpose baking mix for pancakes (1 cup mix, 1 cup almond milk, 1 egg, 1 tbsp oil for pancakes)

Tinkyada pasta

Betty Crocker chocolate chip cookies. MUST use real butter to make them taste good.

Here is a flourless cookie recipe that kept me going in the beginning.

1 cup peanut butter

1 cup sugar

1 tsp baking powder

1 egg

Mix and form into balls. Flatten balls of dough on cookie sheet. Bake 350 for 10 minutes until they just start to brown. Let them cool before eating or they fall apart.

Hope this helps!

For TG ask them not to put stuffing in the turkey.

Thanks SansSurfGirl! I have plans to go to Trader Joe's and maybe even Whole Foods (though they are more expensive than TJ's) today to stock up on some things. I have no clue what brands to buy and what will taste good. Last night all I could come up with to eat after the cabinet purge was some fresh broccoli and miso soup. For breakfast I had two eggs. I am eager to get gluten out of my life so that I can start feeling better!

jess-gf Explorer

Thank you for this message and the cookie recipe. I'm new to this too and the first week I was like a soldier... I CAN DO ANYTHING lol but now that the newness and maybe fear has worn off a bit, I'm needing help to find things to eat.. I know the whole foods, we were eating those before celiac came along but replacing the pasta, cereal and bread has been interesting. Rice/corn pasta ACKKK Gluten free bread (found Udi's white sandwich bread last night (will take some getting used to it melts instead of chewing it. ewww can't have the whole grain one allergic to flax :() Ahh I will survive... Lost 4 more lbs this week though and I've been eating... is that why the 'stars' go gluten free to lose weight quickly? I've lost 25 lbs in a about 5 weeks. only been on gluten-free for 2 but it's still falling off even though I'm eating now. :unsure:

I haven't lost any weight really - I've stayed about the same for years which can be a bummer when exercising and nothing really happens. But I haven't had problems with D - if anything it's C.

Is there a celiac food review source somewhere, I wonder?

starrytrekchic Apprentice

Thanks for the responses so far!

My brain is telling me that I ought to eat meat since I do have problems with dairy (and soymilk gives me gas, all brands) and even goat milk can be troublesome. I also suspect I have been malnourished because, as my hair stylist noticed, I've lost about.. 20% or so of my hair in under a year.

But my heart is saying no :(

I am thinking about seeing a nutritionist/dietician that is affiliated with my GI specialist.. but I'm not sure if insurance will cover that and I also don't know if she will have time for an appt before the holidays.

Don't let anyone talk you into something you don't want to do! Most people far overestimate the amount of protein needed. Unless you're eating nothing but carbs all day, I wouldn't even worry about the protein--you can get plenty from peanut butter, eggs, nuts, etc. The dairy problems are likely secondary lactose intolerance--something that will clear up a few months gluten free, once your intestines have healed more.

Give yourself a few months on the diet. Your body will let you know if you're missing anything and need to adjust your diet further by then.

Skylark Collaborator

I haven't lost any weight really - I've stayed about the same for years which can be a bummer when exercising and nothing really happens. But I haven't had problems with D - if anything it's C.

Is there a celiac food review source somewhere, I wonder?

You're on it! Try this thread. It's funny and has a lot of people's opinions. Also use the search function about various brands. Google also pulls up threads from here pretty well.

jess-gf Explorer

Well I spend about 4 hours between Trader Joe's and Whole Foods today :P I much prefer TJ's - the store has a better layout, doesn't feel as crowded, and it's sooo much cheaper! Plus TJ's has so many gluten-free options. Things that are gluten-free have little "G" icons that are easy to see - awesome! Plus they printed out their list of gluten-free foods as well. The only reason I went over to WF was because they didn't have quite as much selection of flour alternatives.. but that's about it. I got a jar of their peanut butter to try and make those peanut butter cookies SandSurfGirl suggested. I also got their pumpkin butter which I have read that most celiacs can eat - though the label does say that it's processed in a facility that also does wheat :/ Not sure about that one.

I'm still a bit stumped with what to bring for TG. I'm going to test out this recipe and see if it's good or not: Open Original Shared Link

cap6 Enthusiast

Take it slow. And everyone is right. Your body will slowly heal and start to tell you what you need. You can only make so many changes at a time or it is completely overwhelming. I find (to my dismay??) that I now crave fruit and veggies rather than sweets & junk stuff (something wrong with that picture. lol) Given a choice I would rather munch on carrots & hummus than chips with the rest of the gang. I think that it is just my body finally healing and starting to smile again.

Sandsurgirl - you made me laugh! My first shopping trip I put my head down on the cart and cried! We can laugh about it now - I think!!!!! Really.... the shopping does get easier and easier.

jess-gf Explorer

I felt like crying, but I think I just whimpered! Luckily my boyfriend was with me at the time and he is very supportive. He just wants me to feel better.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.