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 Today...

KarenW

Recommended Posts

KarenW Newbie
KarenW
Posted

I just heard from the doctor today that my blood work came back positive for Celiac disease. I will be getting a packet in the mail with lots of information including a script for a bone scan and an appointment with a dietitian. I have been reading through the site and I'm feeling a little overwhelmed. I see many things that I can relate to. I am not underweight however , just the opposite and I am worried. I see that many people on the site talk about well needed weight gain and being hungry all the time. I certainly don't want to gain weight. I am also overwhelmed by the restrictions. Is there a complete (or extensive) list somewhere of things to avoid, beyond the obvious. Are there levels of Celiac disease? I do have the bloating, joint pain, dry skin, insomnia, periodic stomach pain with vomiting, bowel trouble, ridges in my nails, anemia. It seems like a lot as I am writing it, but there is a part of me that feels I am taking a lot of little things and making a big deal out of it since I am also in my 50's and some things are just expected with age. Has anyone else been conflicted? Thanks.

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

Celiac.com Sponsor (A8-M):


farmwife67 Explorer
farmwife67
Posted

I just heard from the doctor today that my blood work came back positive for Celiac disease. I will be getting a packet in the mail with lots of information including a script for a bone scan and an appointment with a dietitian. I have been reading through the site and I'm feeling a little overwhelmed. I see many things that I can relate to. I am not underweight however , just the opposite and I am worried. I see that many people on the site talk about well needed weight gain and being hungry all the time. I certainly don't want to gain weight. I am also overwhelmed by the restrictions. Is there a complete (or extensive) list somewhere of things to avoid, beyond the obvious. Are there levels of Celiac disease? I do have the bloating, joint pain, dry skin, insomnia, periodic stomach pain with vomiting, bowel trouble, ridges in my nails, anemia. It seems like a lot as I am writing it, but there is a part of me that feels I am taking a lot of little things and making a big deal out of it since I am also in my 50's and some things are just expected with age. Has anyone else been conflicted? Thanks.

There are not levels of celiac disease, you either have it or you don't. (just like you can't be a little pregnant you either are or you aren't) You must completely omit wheat, oats, barley, and rye. There are many places to get help, keep asking questions here, it really isn't a bad diet. You just have to be cautious when eating out. If your whole house can go gluten free that helps too, because then there is no risk of cross contamination. It seems overwhelming, but it really isn't that bad, unless you are going away, then you just have to plan ahead. It is worth feeling better! Keep searching the web and this site and you will be very happy. I would like to recommend Udi's bread. It is the only bread that really tastes like bread and doesn't fall apart. You can get it at many places and your local health food store may be able to order it so you don't pay shipping charges. Trust me and many others here it is the only answer to store bought bread. I guess there are good recipes for bread, but I don't have time for that. Good luck and it will be worth the effort!!!!

sandy-sas Rookie
sandy-sas
Posted

There are not levels of celiac disease, you either have it or you don't. (just like you can't be a little pregnant you either are or you aren't) You must completely omit wheat, oats, barley, and rye.

Not everyone has to eliminate oats do they? My husband eats them all the time with no problem. I buy the gluten free oats. My husbands gastro doctor said he could eat regular oats as long as he didn't react to them.

Sandy

Jestgar Rising Star
Jestgar
Posted

gluten-free oats are fine if you have no reaction to them.

The diet gets easier with practice. It is completely overwhelming at first, but as you get used to knowing which things you can, and can't eat, it all becomes a habit.

For the first few months don't worry about how much you eat. Stick to healthy foods, and eat when you're hungry. Your body is deficient in a lot of nutrients and it is trying to recover them. After going gluten-free I lost about 30 pounds without changing anything else.

There are no levels - it is yes or no.

KarenW Newbie
KarenW
Posted
  • Author

Thank you all for replying. I am looking forward to learning and getting heathier.

nyctexangal Rookie
nyctexangal
Posted

I have lost 7 pounds since going gluten free in 3 months. So if you are overweight- you're body will love being gluten free and will work for you, not against you. But yes, VERY important to get on all the right supplements. Hang in there, I know it's overwhelming!

bluebonnet Explorer
bluebonnet
Posted

rewind 3 1/2 months ago when i first went gluten free and i lost 10 lbs in 1 month and steadily since. as of last weekend i am taking the gluten challenge and feeling it. like you, i am not an underweight celiac ... i had about 30 lbs i wanted to finally be rid of. BUT since eating gluten for a week i have not lost anything (actually put on 1 lb and my waist ballooned 2" to 3" ). bloating and D & C extremes. i'm trying to eat my gluten in healthier forms such as kashi over a donut so i don't think i'm gaining from that. it just seems like my body doesn't drop the weight like others. strange.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

I just heard from the doctor today that my blood work came back positive for Celiac disease. I will be getting a packet in the mail with lots of information including a script for a bone scan and an appointment with a dietitian. I have been reading through the site and I'm feeling a little overwhelmed. I see many things that I can relate to. I am not underweight however , just the opposite and I am worried. I see that many people on the site talk about well needed weight gain and being hungry all the time. I certainly don't want to gain weight. I am also overwhelmed by the restrictions. Is there a complete (or extensive) list somewhere of things to avoid, beyond the obvious. Are there levels of Celiac disease? I do have the bloating, joint pain, dry skin, insomnia, periodic stomach pain with vomiting, bowel trouble, ridges in my nails, anemia. It seems like a lot as I am writing it, but there is a part of me that feels I am taking a lot of little things and making a big deal out of it since I am also in my 50's and some things are just expected with age. Has anyone else been conflicted? Thanks.

There is no such thing as levels of celiac. You have it, and will feel SO much better on a gluten-free diet. Don't worry about weight gain. Some celiacs are underweight, but others are overweight because they are malnourished and their body keeps telling them to eat. I had no weight changes at all when I switched diets.

Instead of getting overwhelmed, start simple and cook a lot. Eat fruits and veggies, salads with oil and vinegar (anything but malt vinegar is fine), rice, potatoes, and fresh meats with simple flavorings like onions or garlic. Plain, unprocessed cheese is great if you're not casein-sensitive. The produce department is the best place to find naturally gluten-free food. For breakfast, get gluten-free cereal like Rice Chex, Cream of Rice or grits, or make eggs and gluten-free toast or homemade hash browns.

Our host site, Celiac.com has links to diet lists right on the front page.

Salax Contributor
Salax
Posted

B) Congratulations on your new adventure!

I am not sure if you have health issues that got you to this point, but the journey here was the toughest for most of us. So if that is your situation, your not alone.

This site is the best site for us, the information is great and the people are awesome. We can and are your support group through this new adventure.

In regards to oats, gluten free oats are ok. Regular oats can be contaminated with wheat as generally they are grown and processes in the plant on the same lines. Which is why we usually avoid oats unless they are specifically labeled gluten free. No sure who asked that question. ;)

I too am an overweight celiac and the weight since the diet has started to slowly fall off. But a word of caution, processed gluten free foods usually (in most cases) have a higher calorie count. So beware. If you stick to meats, veggies, fruits, rice, corn and potatoes (if you can eat those as well), and some dairy after a bit (moderation of course)..you

jenngolightly Contributor
jenngolightly
Posted

Hi there. I wasn't underweight, either. Unfortunately, when I started the diet I looked for replacements to all of my gluten food and ended up gaining more weight! There are lots of prepackaged gluten-free junk foods that have lots of calories and can prevent you from losing weight. Cookies, chips, cereal, cinnamon rolls, muffins, bagels, pasta... What I had to learn was to stop buying that junk (and it's so much more expensive than the gluten counterparts), and start eating healthy food. Shop the perimeter of the grocery store - fruits and veggies, meats, and dairy aisles. There are also cereals as another poster mentioned. You don't have to live at Whole Foods, many foods are available at your local market. But you will find that it's more expensive in the long run. A loaf of Udi's is $4.50 - and it's much smaller than a loaf of regular bread. But well worth it.

I don't know about you, but I wasn't a cook before I was diagnosed. That made it hard to eat well. All of a sudden I had to learn to use my stove and oven for real food, not just warming up frozen dinners or making hamburger helper. I think that's another reason I gained weight - I was still trying to find quick alternatives to eating out and that meant junk food and lots of carbs.

Moral: Gluten-free doesn't mean low-calories!

Skylark Collaborator
Skylark
Posted

As far as oats, the scientific consensus is that while most celiacs can eat uncontaminated oats safely, a few cannot. Across studies, some people have dropped out of oat studies because they felt unwell, and one had a biopsy-proven reaction. There are also immunological measures that suggest minor reactions in some people. What's recommended in the literature now is that celiacs eating oats be followed with blood tests to be sure they can tolerate them.

Here's a link to two abstracts of recent reviews.

Open Original Shared Link

Open Original Shared Link

gf-soph Apprentice
gf-soph
Posted

My grandmother is 85, she too thought that a lot of her problems were age related. She went gluten free as she know about my gluten intolerance and noticed that she felt sick after eating more whole grains. She survived bowel cancer in her 40s that nearly killed her, has osteoporosis and anxiety and didn't enjoy food much.

A few weeks later she feels *years* younger, is free of the stomach pain that she had for years, and is happier than I have ever known her. She enjoys her food again, sleeps better, has lost weight, and is far less anxious. Not everyone has such a quick or obvious reaction to going gluten free, but it goes to show that 50s certainly isn't too late to benefit :)

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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,548
    • Most Online (within 30 mins)
      7,748
    KandiWoods
    Newest Member
    KandiWoods
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.