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

I'm Confused Now


Kitty Cat

Recommended Posts

Kitty Cat Newbie

Okay can someone please explain this to me? Now I think I have a gluten sensitivity and went to the doctor. Had blood work done and it came back negative for Celiac disease. Now what or is there a difference between a sensitivity and Celiac disease? My doctor assured me that this test is 95% accurate for Celiac disease but he never said anything about sensitivity. The other thing is that I could have gallstones in my stomach and that


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Hi Kitty Cat,

I'm sure somewhere on this site someone has detailed the difference between gluten sensitivity and Celiacs. I don't have an official answer. I think this can be a very hard disease to diagnos. I think some people cannot get a true biopsy diagnosis, but try the diet and feel better.

Another option for you is Entero Labs. You do not need a dr to order a test from them. It is a stool sample test.

When it comes to the gallbladder, many celiacs have had their gallbladder removed before getting a diagnosis of Celiacs. I am one of them. If I had it to do over again, I would insist on a endoscopy biopsy before having my gallbladder removed. At minimum, get a test through Entero Labs before having the gallbladder removed.

As for the diet, unfortunately this diet is all or nothing. I imagine you have gone through some pain and suffering and are pretty frustrated with feeling miserable, which is why you asked for the celiacs test in the first place. If you think you have a sensitivity to gluten or celiacs, try to the gluten-free diet at 100%. The reason is you feel awful now. They will take to you soon about removing your gallbladder. Why endure a surgery and problems with fatty foods for life without trying a diet change first? Write down all of your symptoms and problems. Then try the diet at 100% gluten-free for a few months. See what happens. You may not have any change. You may feel dramatically better. Your mysterious pains might go away for good. Once you have been gluten-free at 100% for a few months, eat some gluten and see what happens. Most people start seeing changes within a week or two.

I doubt people will be mad at you if you go gluten lite, we have all been there. If you decide to go gluten lite, just keep the thoubght of going 100% gluten-free in your mind. Or go gluten-free in phases if that is easier for you. Phase 1, food. Phase 2, cosemtics. Phase 3, kitchen appliances.

Good luck. And read up on Celiacs or post more questions on the forum.

hathor Contributor

Celiac is a subset of gluten sensitivity.

Here is another thread just started on the same subject. I posted there a link to a couple articles that should help you.

Open Original Shared Link

Also, as I'm sure people here will point out, there are false negatives with blood tests.

mommyagain Explorer

95% accurate? That seems WAY high! If that were really the case, celiac would be extremely easy to diagnose! A LOT of people on this board have had negative bloodwork, followed by a positive biopsy. The biopsy is still the "gold standard" for diagnosing celiac (in the medical community). On this board, the gold standard seems to be, do gluten-free for a couple of months. If you feel better, you're probably celiac or gluten-intolerant. The difference between celiac and gluten-intolerant has been discussed several times, but the treatment is the same... a gluten-free diet!

Why are you resistant to going 100% gluten-free? I know it can be intimidating at first... but if it can keep you healthy, it's totally worth it!

hathor Contributor

(Unless I'm confusing the two terms ;) ), accuracy measures what percentage of those with a positive result actually have the disorder. Sensitivity is a measure of what percentage of those with a negative result do not have the disorder. My understanding is that the blood tests are highly accurate, meaning that if you have a positive result you most likely have the disease. However, they aren't that sensitive, meaning that a negative result doesn't necessarily mean that you do NOT have the disease. In other words, there are a significant number of false negatives, but not false positives.

I recently read the sensitivity figure for blood tests and it wasn't that high. I wish I could remember what it was. Perhaps someone else will have the figure at their fingertips. I can't even remember where I saw this.

Kitty Cat Newbie
Why are you resistant to going 100% gluten-free? I know it can be intimidating at first... but if it can keep you healthy, it's totally worth it!

Yes it is I guess having a hard time giving up the veggie sandwich down the street and pizza. I'm sure with the veggie sandwich I can bring in my own bread. It's a family owned place and I'm sure they would work with me.

One big difference I can tell not eating gluten in my breathing when I run. Last weekend I ate bread and such and had a horrible run on Tuesday. It might be mental but I like it.

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.