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

Help For A Newbie


lbonnell

Recommended Posts

lbonnell Newbie

Hello, I have been watching for some time and decided I need help! I have had some kind of autoimmune problem for many years. Every test came out negative. I recently (because of this site) asked a Doc to do a celiac test which presented as "neg" (in his words, don't have the details). I have gone gluten-free on and off and feel great. When I eat gluten, I blow up like a balloon, my abdomen swells to about three times its size. My throat burns, I itch and become very "foggy". I am seeing a new Doc very soon and would like to know what to ask her. If I do not have celiac, I am sure I have at least an allergy. I struggle with gluten free, I know I need to expand my foods. I get bored eating the same things and end up going back to bread. Any help is appreciated! I am 42 years old and am trying to be the healthiest person I can be.

Thanks!

Lisa


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Welcome Lisa.......there are many Lisa's here.

If you are going to a new doctor soon, I would suggest that you stay on a gluten diet. Providing that you are going to be tested, by way of blood test. If you eliminate gluten from you diet now, you will not have an accurate test. What testing have you had done?

If you have already have the testing done. Try being totally gluten free and see how you feel. It may take some time to feel better. I have been gluten free (as best) for about a year and a half, and I still have some ups and downs.

If you have been reading here, there is more to be gluten free than staying away from breads and pastas. Gluten is in a great deal of things.... lotions, creams, lipsticks, toothpaste (?), shampoo.....

If you do have Celiac Disease, you have it for life. A gluten free lifestyle is the cure.

If you are tired of eating the same thing, this site has the most wonderful recipes. Please search this site and there are boundless options for wonderful dining, gluten free and delicious.

lbonnell Newbie

Thanks for your response! I actually had a Dr. appt today. She was WONDERFUL! She is testing (blood) tomorrow. She did day that I need to remain gluten free, regardless of the test because it may not show anything. She also recommended a support group. I was very pleased, all other Dr.s dismissed me. I went out and bought some gluten-free flours. I wanted to ask if Guar Gum is the same as Xantham (sp?) gum to use in recipies.

Thanks Again

Lisa

breann6 Contributor

good for you, and good for your doctor. sounds like your feeling better off gluten from your first post so thats telling you something. hopefully you continue on getting better and expanding your diets. i love how i eat more fresh fruits and veggies....im feeling better all the time and i'm only at a bit over a month....drink lots of water during the beginning too. Try and cut back on the processed foods at first too and see if that helps, it helped me a lot...

take care!

Breann :)

oh and welcome to the board!!

CarlaB Enthusiast

Lisa, welcome!

If you feel better gluten-free, then stay gluten-free, as your doc said. I also feel better gluten-free, but testing does not show I have a problem with it.

There are some pretty good breads out there .... EnerG and Kinnikinnick. They get better the longer you've been away from "real" bread!! :P They are also better toasted or microwaved.

Tinkyada makes great pasta.

If your health problems go away gluten-free, then stay gluten-free. If you still have some problems but feel better gluten-free, then stay gluten-free and keep looking for what else is wrong .... some of us who are non-celiac gluten intolerant have other health issues that may or may not be causing the food sensitivities ... some just feel better off gluten and have no other problems.

Rebecca47 Contributor

Hi Lisa, If you think its apropriate I would also suggest that you have a bone density test. If you haven't alreay asked her about it. My doctor had one done on myself , because of all the years of not absorbing calcium and vitamin D etc. :) It gets better seems like it takes forever.

GFBetsy Rookie

Guar gum does the same thing as xanthan gum, and I understand that it can be substituted teaspoon for teaspoon in recipes.


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



Celiac.com Sponsor (A8-M):



clhsc Apprentice

Where can you find Tinkyada pasta? Can you order it online?

breann6 Contributor
Where can you find Tinkyada pasta? Can you order it online?

i get it at Whole Foods, or at Nutrition Depot- you can also buy it online. there is typically a small selection of gluten free pasta's in our Natural Foods section at Kroger or Publix but they aren't as good as Tinkyada pasta in my opinion.

~breann :)

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. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

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

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

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

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,359
    • Most Online (within 30 mins)
      7,748

    Halbori pricillia
    Newest Member
    Halbori pricillia
    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

    • SilkieFairy
      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      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
      @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
      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
      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.  
×
×
  • 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.