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

No Idea What To Expect...


farfromhome

Recommended Posts

farfromhome Newbie

I just got my biopsy done (not without a lot of crying, I assure you), and I'm wondering a few things. My doctor had never said a word about Celiac disease or a gluten allergy or wheat intolerance, I'd never had a blood test for it, but when I came out of the endoscopy, he told my mom (as I was a bit flighty) that they took a biopsy to check for a gluten allergy (and I would assume Celiac and wheat intolerance). Is there anything that would show up in my bowel if I had the allergy/Celiac? Wouldn't he need a microscope or something? I'm confused.

My symptoms are: nausea every day for the past few years, vomiting, anxiety, depression, D (sometimes), ichyness (sp?), vitamin deficiencies (we think), SEVERE heartburn every night, and a very poor immune system. The allergy/Celiac would explain most/all of my symptoms and I would really like to know if anyone thinks they're a good indicator.

I would LOVE any advice/thoughts/comments anyone has. Thanks in advance.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

They do put the biopsy under a microscope to see if there's damage to the intestinal villi. The damage happens in the small intestine.

Even if your biopsy is negative, you still might want to try the gluten-free diet. Some of us don't have celiac, but non-celiac gluten intolerance, and we have the same symptoms as celiac.

In the meantime, try natural apple cider vinegar (like Braggs) available at the health food store. Put a tsp. in a glass of water. It helps with heartburn/reflux. You can drink it three times daily (according to the manufacturer) as it has wonderful health benefits. Open Original Shared Link

sherylj Rookie
I just got my biopsy done (not without a lot of crying, I assure you), and I'm wondering a few things. My doctor had never said a word about Celiac disease or a gluten allergy or wheat intolerance, I'd never had a blood test for it, but when I came out of the endoscopy, he told my mom (as I was a bit flighty) that they took a biopsy to check for a gluten allergy (and I would assume Celiac and wheat intolerance). Is there anything that would show up in my bowel if I had the allergy/Celiac? Wouldn't he need a microscope or something? I'm confused.

My symptoms are: nausea every day for the past few years, vomiting, anxiety, depression, D (sometimes), ichyness (sp?), vitamin deficiencies (we think), SEVERE heartburn every night, and a very poor immune system. The allergy/Celiac would explain most/all of my symptoms and I would really like to know if anyone thinks they're a good indicator.

I would LOVE any advice/thoughts/comments anyone has. Thanks in advance.

You have all the same symptoms I did and my biopsy came back positive for celiac. But it is hard to wait for the diagnosis. I was loopy after the biopsy as well. I have been on the diet now for 3 weeks and am doing okay but I was off and on this diet for 10 years. And I've had some practice at following the gluten-free recommendations. (My dr. wasn't in a hurry to find a diagnosis) So the good news is..you have had the biopsy and soon will know for sure.

If you don't know what gluten is or where it is hidden I would encourage you to get a spiral bound notebook and start collecting articles from online sources. that way you will have some information in your hands when they call to give you your diagnosis and won't feel so overwhelmed. If you are positive for celiac they should give you a referral to a dietician or you can collect information yourself.

So I am kind of jumping to conclusions but your symptoms sound so like celiac. Gluten free is just a different way to approach fooding, as my daughter calls it. She is a freshman at MSU and has food allergies so eating in the cafeteria has been a challenge for her but she is dealing with it.

Let us know how things turn out,,k??? Sherylj :)

farfromhome Newbie

Thanks you guys. I guess I should add- I'm a sophmore at USC (the old one- in South Carolina), I turn 20 next friday (not looking forward to trying to arrange for a gluten free cake if I am positive), and I live 2 hours from home. I keep saying "I can't do this" and my boyfriend, Shane, just tells me I have to if it comes back positive and I won't have any choice. We both secretly hope it's true because I want to feel better and he gets tired of my constant "my stomach hurts, I can't go out", but I'm terrified of trying to learn all this without my mom standing over me telling me what to do. I mean, I'm grown up, but I'm not that grown up. Don't worry about jumping the gun....I'm pretty sure that I have Celiac or at least gluten intolerance. The symptoms are just too similar and like they say in science- the simplest explanation is usually the right one. Or true one. Whichever. Sorry if I'm a downer- I'm just sort of overwhelmed by the possibility itself and I'm in the middle of a semester...so I'm in the middle of midterms, so lots going on and my brain is just trying to understand it all, I guess. :huh: At least I can tell my family doctor back home that I'm NOT making this stuff up (the popular opinion between him and my mom) and there really is something going on- even if it's just a hernia (they found a very small hiatal hernia that shouldn't even cause symptoms it's so small), it explains some of my symptoms.

Thanks again,

Sarah

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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.