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

New With Questions


popoki321

Recommended Posts

popoki321 Rookie

Hi Everyone,

Sorry if this is a little long.

I am here because my doctor thinks I may have Celiac Disease and I have some questions. I have had blood tests (not sure which tests) and the Dr. feels the results indicate I could have this disease. I am scheduled for an endoscopy/biopsy this Friday morning.

My Dr. has been wonderful and encouraged me to look up Celiac Disease on a search engine and I was lucky enough to come across this web forum.

After all the reading I've been doing about Celiac Disease, I think I could definitely have this disease.

I'm 34 and have suffered with IBS symptoms since my late teens.

A few months ago I wound up in the hospital for a severe pain in my left side, which turned out to be Diverticulitis. I had a very severe infection and was in the hospital for a week. I was unaware that I had this condition.

After coming out of the hospital I was still in alot of pain, especially on my left side. My Gastro thought I should have a colonoscopy to make sure that everything was ok. At the time I had the colonoscopy , the Dr. ordered some blood work as well.

This is when I got the news that he thinks I may have celiac disease.

Thinking back to a few years ago when I was on the Atkins Diet, I felt great- not 100%, but much better than usual. I remember commenting to my boyfriend how great my stomach was feeling all the time.

I can't imagine how great I will feel if I am completely gluten free.

Don't get me wrong, I am also scared, worried and freaking out that I am going to have to change everything I ever knew about eating.

I am already limited as to what I can eat because of the diverticulitis, so having celiac disease will make it even more difficult but my health and feeling good is the most important thing to me right now. I will do whatever I need to keep myself healthy.

I'm currently on NutriSystem to lose some weight but I know I will have to go off if I am diagnosed. The doctor told not to change my diet until after the endoscopy. I still want to lose some weight before June, when I am getting married.

It definitely helps to know there is such a great support system out there.

A few questions:

Will I know the results right away, at the time of the test or does the biopsy have to be sent off for testing? If so, How long does it usually take?

Does anyone else have Diverticulitis? Is this common among people with celiac disease?

Can I still eat fat free/light yogurt if I have celiac disease ?

I'm sure I'll have a million more questions so please bear with me. I'm new at this!

Thank you.


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

Welcome! I hope that your biopsy goes well on Friday. They will have to send the biopsies to the lab. However, I called my doctors office 2 days after my biopsy and I got my results. I didn't wait for the doctor to call me because I was too impateinet, so I just called them. Please free free to ask questions and we will try our best to help. Also, don't hesitate to ask for meal ideas and recipes.

GlutenFreeAl Contributor

Sorry I can't answer all of your questions...I'm fairly new to this myself!

Please please please check those yogurt labels carefully. Some are ok, but I learned the hard way that some brands and some flavors do contain wheat starch. I've heard that Yoplait is ok, but I can't confirm that. My local grocery store labels all of their store brand products with a "G" to indicate gluten free, so I buy a lot of their own store products.

Good luck! And ask any questions you need to. This forum is a lifesaver!

IronedOut Apprentice

I had to wait on my biopsy results, but they recommended a gluten-free diet just from the visual on the endoscopy. There are yogurts out there, just be sure to read the label!

Sorry I can't answer all of your questions...I'm fairly new to this myself!

Please please please check those yogurt labels carefully. Some are ok, but I learned the hard way that some brands and some flavors do contain wheat starch. I've heard that Yoplait is ok, but I can't confirm that. My local grocery store labels all of their store brand products with a "G" to indicate gluten free, so I buy a lot of their own store products.

Good luck! And ask any questions you need to. This forum is a lifesaver!

Hey Al - If you don't name the grocery store, you're just a tease!!

jerseyangel Proficient

I had to wait a week and a half for the results of my biopsy, but the Dr. told me to begin the gluten free/dairy free diet the day of the biopsy.

Yogurt--check the labels--especially the lite or fat free ones.

GlutenFreeAl Contributor
Hey Al - If you don't name the grocery store, you're just a tease!!

Sorry. I shop at Wegmans. I think they're only in NY and PA. They're very aware of food sensitivities and even before the new labeling law would label things as lactose free, gluten free, vegan, etc.

If you're ever in the area, check them out!

hez Enthusiast

Based on my blood work I was told to go gluten-free before my endoscopy. Had my endoscopy 3 or 4 weeks after that. My gi doc could not find one villi standing up. So she was positive I had celiac before the results came back. I think it took about a week for them to call.

I like to eat Mountain High Yogurt (says gluten-free on the label) and mix in honey and frozen fruit. Welcome to the board :)

Hez


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



Celiac.com Sponsor (A8-M):



IronedOut Apprentice

Wegman's has seriously expanded - they are now in NJ, MD, VA and DE. Yeah!

Spoke to quickly - coming SOON to Delaware.

Guest nini

regardless of the results of your test results, just as soon as you are done with your endoscopy, go ahead and start the diet. the thing with the Atkins diet, is that the majority of the diet is naturally gluten free, at least the first stage of it... My mom had a tremendous amount of success on that diet, which leads me to conclude that she most likely has Celiac too... she's had symptoms as long as I can remember, but she won't get tested and she won't try the diet now...

even if your test results aren't conclusive, give the diet a good effort... really go at it 100% and monitor your symptoms...

good luck with it and feel free to ask any questions that come up.

popoki321 Rookie

Thanks so much for all the kind words and for answering some of my questions.

QUOTE(GlutenFreeAl @ Feb 1 2006, 03:40 PM)

Sorry. I shop at Wegmans. I think they're only in NY and PA. They're very aware of food sensitivities and even before the new labeling law would label things as lactose free, gluten free, vegan, etc.

I have been to Wegmans supermarket when I was in Buffalo for work but the closest one to where I live is about 2 1/2 hours away. I wish more supermarkets would do what Wegmans has started.

I'm not nervous about the biopsy, I just want it to be over with and have a definitive answer.

Thanks again and I will let you know how it goes.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

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

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    VanessaC
    Newest Member
    VanessaC
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.