Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Not Diagnosed For Celiac Yet.

Nonna2

Recommended Posts

Nonna2 Newbie
Nonna2
Posted

My family doctor thinks I may have celiac disease. On and off I would have bouts with D and then it would go away, then episodes became closer and closer. I am having a blood test this week and a colonscopy and endoscopy in the beginning of July. Since I am suspected of this I have started to change my diet and the severe stomach cramps and D have been relieved somewhat, although the b movement is still not normal. I keep checking things to make sure they are ok to have, but did not check Coffeemate until today and it has soy in it. Does anyone have a problem with that too, trying to get a grip on the does and don'ts until my test. And how long before you return to normal if it fact I do have celiac disease.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Welcome, Nonna! Since you are scheduled for an endoscopy in early July, you need to keep eating gluten until that is done so while you may want to educate yourself, don't go gluten-free just yet or you're liable to have negative results even though you may indeed have celiac. I actually went gluten-free the day of my endoscopy as it was clear to me that I had celiac.

A number of people on the forum have problems with soy.

We are all different so it's impossible to tell you how long it may take you to feel better. Some people notice improvement very quickly and others take much longer. I wish I had an answer for you.

Link to comment
Share on other sites
tom Contributor
tom
Posted

Coffeemate also has a milk protein derivative - yes, insane for a "non-dairy" product HA! - called sodium caseinate. So, anyone thinking they're dairy-free w/ coffeemate is wrong, it's just lactose-free.

I'd be bothered by both the soy & the casein.

Link to comment
Share on other sites
mushroom Proficient
mushroom
Posted

Yes, if you are going to go for an endoscopy I echo Sylvia, DO NOT stop eating gluten yet. In the absence of gluten the body starts to heal and your test could well come up negative by then. Use this time to learn what you will have to do once you have had the endoscopy. Start cleaning out your pantry, etc., but keep eating gluten.

Link to comment
Share on other sites
TiaMichi2 Apprentice
TiaMichi2
Posted

Yes, if you are going to go for an endoscopy I echo Sylvia, DO NOT stop eating gluten yet. In the absence of gluten the body starts to heal and your test could well come up negative by then. Use this time to learn what you will have to do once you have had the endoscopy. Start cleaning out your pantry, etc., but keep eating gluten.

Right there with Silvia stay on the Gluten, until you get your "golden seal" aka endoscopy. I am sensitive not only to gluten, but soy, dairy, eggs (but can tolerate egg white a bit, weird I know), xanthan gum also gives me the same reaction as gluten. It was kind of trial and error for me. Teach yourself how to read labels, and even though it says gluten-free, read the disclosure estatement as to where and how food is processed, to be aware fo CC.

It can be overwhelming at first, but you will learn, to me if I am not sure of what I read on the label it does not go in my mouth,or on my body until I research and am positively sure.

One positive thing, you will be eating really healthy :)

-Miriam

Link to comment
Share on other sites
Nonna2 Newbie
Nonna2
  • Author
Posted

Yes, if you are going to go for an endoscopy I echo Sylvia, DO NOT stop eating gluten yet. In the absence of gluten the body starts to heal and your test could well come up negative by then. Use this time to learn what you will have to do once you have had the endoscopy. Start cleaning out your pantry, etc., but keep eating gluten.

Welcome, Nonna! Since you are scheduled for an endoscopy in early July, you need to keep eating gluten until that is done so while you may want to educate yourself, don't go gluten-free just yet or you're liable to have negative results even though you may indeed have celiac. I actually went gluten-free the day of my endoscopy as it was clear to me that I had celiac.

A number of people on the forum have problems with soy.

We are all different so it's impossible to tell you how long it may take you to feel better. Some people notice improvement very quickly and others take much longer. I wish I had an answer for you.

Thanks for your input, although I am feeling a bit better without the gluten and finding it hard to go back before my colonoscopy/endoscopy, don't want to feel sick again. Had my blood test today maybe the panel will show something. Also new arrival of only one hive on my wrist, very strange. My test are not being done till July 2nd, trying to move up but they have not openings, my luck.

Link to comment
Share on other sites
sa1937 Community Regular
sa1937
Posted

Thanks for your input, although I am feeling a bit better without the gluten and finding it hard to go back before my colonoscopy/endoscopy, don't want to feel sick again. Had my blood test today maybe the panel will show something. Also new arrival of only one hive on my wrist, very strange. My test are not being done till July 2nd, trying to move up but they have not openings, my luck.

Can you be put on a cancellation list to see if you can get in sooner?

Link to comment
Share on other sites
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. Wheatwacked
      - Wheatwacked replied to Chris Tonelli's topic in Related Issues & Disorders
      3

      Rampant decay caused by Celiac’s disease

      She should be tested for 25(OH)D vitamin D blood level. Most newly diagnosed with Celiac Disease are disturbingly low. Malabsorption syndrome causes poor dietary absorption of vitamin D orally and super high sunscreens block skin production. Hypervitminosis D which nearly every article written warns of, is a very rare disease. Many these days drink...
    2. Wheatwacked
      - Wheatwacked replied to Zoe26's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Toddler gluten challenge and vomiting

      When my son was diagnosed with Celiac Disease in 1976 as soon as he was weaned, his doctor insisted that we feed him only Nutramigen it was the only hyperallergenic with complete nutrition. Enfamil and Similac were not acceptable if we wanted him to get healthy. For one thing they had no choline back then. Given the lawsuits against them now, he was...
    3. knitty kitty
      - knitty kitty replied to AmandaA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      20

      New and Frustrated

      Check the label and tell us what kind of B12 is in your gummies. If it's Cyanocobalamin, switch to a methylated (active) form of B12. Some of us need to take the active form of B12 because our bodies have problems turning other forms of B12 into the active methylated form due to MTHFR genetic variations. Take a B Complex supplement, too...
    4. Barrie9
      - Barrie9 replied to Sarah8793's topic in Coping with Celiac Disease
      23

      Anyone Have Dumping Syndrome Related To Celiac Disease?

      Hi! I've been gluten free for years. No surgery, but have dumping syndrome symptoms, particularly if I've eaten a lot of FODMAP foods, or xanthan gum, or any other gums that are in many gluten free foods. You may want to stop eating foods with gums and see if that helps!
    5. knitty kitty
      - knitty kitty replied to Zoe26's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Toddler gluten challenge and vomiting

      @Zoe26, Has he been checked for vitamin deficiencies? Is he pulling up to standing position? Does he crawl? I ask because delayed development can be associated with nutritional deficiencies. Having a hoarse low voice is symptomatic of Thiamine deficiency in children and adults. Complete loss of voice is possible, too. ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      124,992
    • Most Online (within 30 mins)
      7,748
    Houser5120
    Newest Member
    Houser5120
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Rampant decay caused by Celiac’s disease

      By Wheatwacked · Posted

      She should be tested for 25(OH)D vitamin D blood level.  Most newly diagnosed with Celiac Disease are disturbingly low.  Malabsorption syndrome causes poor dietary absorption of vitamin D orally and super high sunscreens block skin production.  Hypervitminosis D which nearly every article written warns of, is a very rare disease. Many these days drink bottled water so do not get the benefit of floridation.  I had lots of cavities as a kid and when they floridated the water I stopped getting cavities.  Of course in those days all we had for sunscreen was baby oil and that "don't be a paleface" stuff, so we actually got vitamin D from the sun.  Celiac Disease uses a lot of vitamin D to control the immune system response to gluten, but we don't get enough. Iodine can help prevent tooth decay and gum disease, and may be more effective when used in combination with fluoride.  Get her medium urinary iodine concentration (Muic) tested for iodine intake deficiency.  In the last 30 years iodine levels have fallen by 50% in the United States.
    • Wheatwacked
      Toddler gluten challenge and vomiting

      By Wheatwacked · Posted

      When my son was diagnosed with Celiac Disease in 1976 as soon as he was weaned, his doctor insisted that we feed him only Nutramigen it was the only hyperallergenic with complete nutrition.  Enfamil and Similac were not acceptable if we wanted him to get healthy.  For one thing they had no  choline back then. Given the lawsuits against them now, he was right. He spent about 6 months on the Nutramigen formula exclusively and weaned off of that to a gluten free diet and thrived. He also predicted that by kindergarden the teacher would beg us to put him on Ritalin, which he took all the way through High School.  
    • knitty kitty
      New and Frustrated

      By knitty kitty · Posted

      Check the label and tell us what kind of B12 is in your gummies.   If it's Cyanocobalamin, switch to a methylated (active) form of B12.   Some of us need to take the active form of B12 because our bodies have problems turning other forms of B12 into the active methylated form due to MTHFR genetic variations.   Take a B Complex supplement, too, because B12 needs the other B vitamins to function properly.
    • Barrie9
      Anyone Have Dumping Syndrome Related To Celiac Disease?

      By Barrie9 · Posted

      Hi! I've been gluten free for years. No surgery,  but have dumping syndrome symptoms,  particularly if I've eaten a lot of FODMAP foods, or xanthan gum, or any other gums that are in many gluten free foods. You may want to stop eating foods with gums and see if that helps!
    • knitty kitty
      Toddler gluten challenge and vomiting

      By knitty kitty · Posted

      @Zoe26, Has he been checked for vitamin deficiencies?    Is he pulling up to standing position?  Does he crawl? I ask because delayed development can be associated with nutritional deficiencies.   Having a hoarse low voice is symptomatic of Thiamine deficiency in children and adults.  Complete loss of voice is possible, too.   "He's extremely lethargic, barely moving."  This statement really worries me.  Thiamine deficiency can cause fatigue and loss of energy like this.  Thiamine deficiency can be serious in small children.  Do mention this to the doctor. It's horrible you and your son had to wait so long for an appointment.
×
×
  • Create New...