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

Newly Diagnosed And Having A Really Hard Time With The Idea Of "never" And "forever"

Rachel-Austin88

Recommended Posts

Rachel-Austin88 Newbie
Rachel-Austin88
Posted

Hi, my name is Rachel, im 25 and I was just diagnosed with Celiac on Friday. When she called me into her office to give me my blood test results i knew that something was wrong. I guess i will start with some back ground first. I have always had stomach problems my whole life but i always just dealt with it. I had my gall bladder removed at 17 and i have my first child at 18. And the stomach pain, diarrhea ect just never got better. It always came in waves, then when away. I thought it was because i was lactose intolerant so i cut out dairy about 6 months ago but that didnt help either. For the past two months i have been constantly tired, even if i got 10-12 hours of sleep. and the worst part is in the past year i gains about 65 pounds. I knew this massive unexplained weight gain was unhealthy, but nothing would make me loose weight, i just gained. I believe that i developed a small case of depresson due to the weight gain and lack of motivation to do anything or go anywhere. Anyway, my entire eating habit has always revolved around pastas bread and baking. I love to cook. EVERYTHING. I know that i should look at this as a new opportunity to try and learn new things, but its hard for me. This weekend i have been living off of water and baked chicken and some rice and lettuce. I dont know where to start with thinking about grocery shopping, i dont know what is and isnt safe to eat. i know that i need to be suspicious of eating out anywhere, but im basically suspicious of eating anything i make also. i dont know what spices are safe, i dont know what foods are safe, i dont know where hidden gluten is. Im starting to feel a little better, (the stomach cramping is gone but im still totally exhausted) and i dont want to accidentally eat something. ANY help or guidance, tips on where to start, anything i would really appreciate. Thank you!!  

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Here is a good place to start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

This notion of hidden gluten is fueled by Internet rumors. In the US & Canada, wheat must be clearly labelled in the ingredients.

You don't have to be perfect the first few days. It can take a few months to figure it all out. Is your doctor sending you to a GI doc for an endoscopy? If so, don't stop eating gluten until after the procedure.

notme Experienced
notme
Posted

welcome to the best club you never wanted to join  :/

 

you said it yourself, foodie :)  it *is* a good opportunity to learn new things to cook.  i felt the same way:  i was always looking for new restaurants/ new recipes/ things to make.  i had just gotten pretty good at making 'gluten' bread and i was pretty proud of myself, then, BOOM that was the end of that!  it takes some getting used to, but trust me, once you get the hang of it, cooking and eating will be second nature.  like a "new" normal.  plus, you will feel so much better soon you will never want to feel bad again.  i know, the always and forever sure suck, but now you will have more and better forever.  good luck and ask questions.  mostly everybody around here is pretty helpful.

 

ps - check the cooking/baking board 'what's for dinner' chat.  pretty good dinner ideas/free entertainment lolz

Rachel-Austin88 Newbie
Rachel-Austin88
Posted
  • Author

Here is a good place to start:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

This notion of hidden gluten is fueled by Internet rumors. In the US & Canada, wheat must be clearly labelled in the ingredients.

You don't have to be perfect the first few days. It can take a few months to figure it all out. Is your doctor sending you to a GI doc for an endoscopy? If so, don't stop eating gluten until after the procedure.

My pcp said my blood test were off the chart on 4 of the ways they tested so she said that there is no need to send me to a GI, that she has no doubts or second thoughts about positively diagnosing me with celiac. The frustrating part is she didnt really tell me to go from here, she just told me that i need to stay away from gluten. 

cyclinglady Grand Master
cyclinglady
Posted

My pcp said my blood test were off the chart on 4 of the ways they tested so she said that there is no need to send me to a GI, that she has no doubts or second thoughts about positively diagnosing me with celiac. The frustrating part is she didnt really tell me to go from here, she just told me that i need to stay away from gluten. 

Welcome.  Believe me, this is the best site for support.  I've been glued to it for the past few weeks, gleaning information and helping others (which really helps me!)   Continue to read up the "101" posting Kareng recommended.   You don't have to live on chicken, rice and lettuce!  Just focus on whole foods.  I made tri-tip (seasoned just with salt and pepper since I'm allergic to garlic), sweet potatoes, green beans and a nice salad.  Dressing was olive oil and balsamic vinegar.  Had strawberries for dessert and then some peanut butter cookies that I made.  I bake all my gluten-free items and it's easy since I've been making gluten-free food for my hubby for the past 12 years.  You just need to get over the shock and take a little time to grieve, but it it won't last long because you'll start to feel better and it's so worth it!  

GFinDC Veteran
GFinDC
Posted

..she just told me that i need to stay away from gluten. 

 

No problem, just cross to sidewalk on the opposite side of the street when you see gluten coming! :)

 

Many doctors are pretty clueless when it comes to nutrition issues and especially eating gluten-free for a celiac.  If you went to a celiac center you'd probably get better advice and be referred to a nutritionist.  Unfortunately many nutritionists are not up to speed on gluten-free eating either, unless they work with celiacs regularly, like at a celiac center.

 

You need to avoid consuming an wheat, rye, barley and oats for at least few months.  Some people recommend avoiding oats for 6 months to a year.  There are about 10 percent of celiacs who also react to oats, and most oats are cross-contaminated (cc).  The easy and simple way to avoid the things you need to avoid is to cook whole foods from scratch.  Take food with you when you go out, fruit or nuts etc, or  a cooler.  After a while you will learn how to deal with eating gluten-free and what works for your body.  All of us are a little bit individual when it comes to what works for us.  The first months are often kind of rough as your body is healing and adjusting to not having villi damage and gluten.

 

Unexplained weight gain can be a symptom of thyroid issues, (hypothyroidism).  Thyroid issues and celiac often go together.  There is also another auto-immune disease called Hashimoto's Thyroiditis that causes damage to the thyroid.  If you have throat swelling and or pain it may be that.  Your doctor can test for it by looking for elevated TPO antibodies.

 

Gall bladder issues are also somewhat common with celiac disease.

 

If you are busy, then cooking a lot of food on the weekend is a good idea. Freeze some and eat it during the week.  Don't forget to check vitamin pills for gluten-free status, and meds.

 

Many grocery stores have a gluten-free section these days or the mark gluten-free items with a special tag, often green.  gluten-free breads / baked items are often kept in a freezer section.  There are celiac support groups in many areas.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?

https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?

https://www.celiac.com/forums/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?

https://www.celiac.com/forums/topic/75238-what-are-you-cooking-tonight/

Dessert thread

https://www.celiac.com/forums/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes

https://www.celiac.com/forums/topic/56641-easy-yummy-bread-in-minutes/

Gemini Experienced
Gemini
Posted

Please go and buy this book to read.......Open Original Shared Link  It is important that you learn the diet correctly and learn about the disease itself.  Only then will you realize that it's not the end of the world and there is plenty for you to eat.  But this book earned high marks from many actual celiacs so it's worth it.  Doctors know nothing about nutrition or the gluten-free diet so there is a certain amount of learning you need to do on your own.  We are always here to answer questions too.  :)

 

Everyone has given good advice but I disagree with some minor details....I had no villi left when diagnosed.  My gut was completely trashed. I did eat some processed, gluten-free foods and did fine with them.  Try to stick with dedicated facilites, if you can but if you are craving a cookie or a brownie, your healing will not be set back if you eat some.  I don't even think you need to avoid dairy at first, just gluten.  Many people can tolerate dairy just fine, others cannot.  I think it best to isolate one food group at a time, unless your symptoms persist for too long.  I did fine for 2 years after going gluten-free and then realized I had a problem with dairy, on return of symptoms.  I can tolerate small amounts but not a lot.  If you take away too much food from people when it may not be necessary, then they will resent the diet and be angry.  People are different and what some cannot tolerate, may not be the same for everyone.  You are already having trouble adjusting a bit, which happens to many, and I don't want to see you go off the deep end here!  You love to cook...that is half the battle with Celiac.  Knowing that, with time and learning, you will be eating awesome food in no time.  We can also help you with cravings and what the best gluten-free products are available.  There is some excellent bread out there and making your own is very do-able!

 

Hang in there!  

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,431
    • Most Online (within 30 mins)
      7,748
    Dave162
    Newest Member
    Dave162
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.