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

Don't Know If I Have Celiac Disease

lauralee

By lauralee
in Coping with Celiac Disease

Recommended Posts

lauralee Newbie
lauralee
Posted

I don't know if I have Celiac Disease or not. My gastroenterologist told me that from the blood tests they did that yes, I did have it even though the only symptom I was showing was unexplained anemia. She did an endoscopy and biopsies. When I went back for the followup in her office the next week (this past Thursday) she said that she the endoscopy and the biopsies were all fine. She said she doesn't know if I have Celiac Disease or not. Supposedly of the three tests they do, two of mine were positive and one was negative and one of my positives was just barely positive. So, she suggested I eat gluten-free for two months and then come back to check my blood again.

Basically...can I seek help and guidance here because I'm having a heck of a time deciphering indgredient lists, etc. I've tried to be gluten-free all week but there's a lot of things I still question if I can eat or not and I want to do this as carefully as I can so I can get as accurate results as possible when I go back for my followup.

Sorry to ramble...and thanks.

lauralee

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Lauralee--For heaven's sake, of course you're welcome here! Feel free to ask anything. Actually, since you have a positive blood test, you have it as far as I'm concerned. There's a ton of info on foods, personal care products and tips on how to avoid CC at home and away. Welcome :)

Guest Robbin
Guest Robbin
Posted

:) Welcome. You will get a lot of help and support on this forum. Nini has a "newbie" kit that will help you. I think you can pm her to get it. Also, you can check out the main website -on the list of choices there is a lot of information you can print out and read to make things easier. It is sometimes a comfort to know that you are not alone. We are all here to help each other. Take care,

Also, I agree with Patti, a positive blood test of any kind is a POSITIVE. Not sure what your doc is thinking.

queenofhearts Explorer
queenofhearts
Posted

This is SUCH a welcoming, comforting place, not to mention an incredible fount of information. I'm newly diagnosed myself & this forum has been a real lifesaver. I see a complete range of folks posting here, from the undiagnosed & curious to old hands sharing years worth of hard-won wisdom! Stick around; you'll be glad you did!

Leah

schuyler Apprentice
schuyler
Posted

Welcome!! As Leah said, everyone here is really nice, so don't be afraid to ask questions. There are plenty of people here who are in the process of getting a diagnosis, so you are not alone. Good luck with everything.

Danielle

jenvan Collaborator
jenvan
Posted

Of course you are welcome here! And, ck out these very helpful ingredient lists--big help for shopping: https://www.celiac.com/st_main.html?p_catid=12

Guest nini
Guest nini
Posted

absolutely you are welcome here, and just e-mail me at nisla@comcast.net for the newbie survival kit in the subject of the e-mail just put "request newbie survival kit" and I will e-mail it to you as soon as I can!

also, since you do have positive blood work (even low positive) you have this as far as I'm concerned too... Too many medical Dr.s are still reluctant to dx this unless they see full blown damage... they are therefore missing too many people in the earlier stages of this... you are lucky, you can start getting better sooner!

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

Celiac.com Sponsor (A8-M):


lauralee Newbie
lauralee
Posted
  • Author

Thanks everyone! You've made me feel welcome. And I will email you in a few mintues, Nini, requesting my newbie kit.

Am I the only person who has trouble deciphering the ingredient labels on foods? Unless it says at the bottom of the list in bold..."contains wheat" I sometimes have no idea what I can and can't have. I've got three books and alot of paperwork with lists on them but sometimes I still cannot identify certain names/ingredients. Can I eat Dannon fruit yogurt or do I have to get plain yogurt and add my own fruit? What about Country Crock mashed potatoes? Should be just potatoes, right? Not according to the ingredients list and I can't decipher all of the things listed.

Thanks,

lauralee

TCA Contributor
TCA
Posted
Thanks everyone! You've made me feel welcome. And I will email you in a few mintues, Nini, requesting my newbie kit.

Am I the only person who has trouble deciphering the ingredient labels on foods? Unless it says at the bottom of the list in bold..."contains wheat" I sometimes have no idea what I can and can't have. I've got three books and alot of paperwork with lists on them but sometimes I still cannot identify certain names/ingredients. Can I eat Dannon fruit yogurt or do I have to get plain yogurt and add my own fruit? What about Country Crock mashed potatoes? Should be just potatoes, right? Not according to the ingredients list and I can't decipher all of the things listed.

Thanks,

lauralee

Trust me, we all KNOW how overwhelming this is at first. The way I started out is that if it had more than just a few ingredients, then I stayed away from it. It was too hard to know. As I went along, I found more and more mainstream things that were really good. I probably spent more on specialty food in the beginning because I didn't trust mainstream stuff. I recommend starting a notebook with info in it. Then start going through your pantry. Call the 1-800 # ont he back of the packages and ask if the product is gluten-free or not. I divided the things I could use up and separated those from the rest of the foods. I also asked the companies to send me lists of their gluten-free foods when I called. This helped in shopping a LOT. I have a list of foods that I put together for my son. It has a lot of kid type foods on it, but it might be helpful. It also includes a list of companies that will always list gluten in the form of WHEAT, RYE, BARLEY AND OATS. I tend to stick with those brands, so I KNOW what I'm getting. Just PM me and with youre e-mai address and I'll be glad to send it to you. Nini's list is great too.

I hope you feel welcome already! Let us know if you have questions.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome aboard!

Going off gluten has had one--no, two-- tremendously positive effects for me (besides for the obvious health bnefits, I mean).

One is that I have become a much better cook (and I wasn't bad at all before, judging by my husband's waistline!). I decided that it was EASIER to stay home and cook what I wanted from scratch rather than go to a restaurant and special-order or stand for hours at the grocery reading ingredients.

The other is that I am saving a ton of money not eating out or buying prepared foods!

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
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.