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

Validity Of The Saliva Test


fontgirl

Recommended Posts

fontgirl Rookie

Hi everyone,

Two of my doctors think that it's possible that I have celiac because I am deficient in at least three vitamins and developed osteoporosis 30 years before my mother! However, I did have gastric surgery and I have malabsorption. We're just not sure if it's from the surgery or something else, so the doctors want to rule out celiac.

Is the saliva test reliable? I had mine sent to Diagnos-Techs, Inc. My gastroenterologist also took a blood sample recently and those results should be back in a few weeks. He told me NOT to go on the celiac diet because it's so oppressive and I have a horrific case of hypoglycemia -- severe low blood sugar -- that was caused by my two stomach surgeries.

Right now, I'm completely intolerant to carbohydrates; am allergic to dairy, nuts, almost all fresh and cooked vegetables, intolerant to fruit and and basically miserable and surviving on 12 foods. That's why he didn't want me to try the celiac diet until I got the blood back and he doesn't want to torture me with another endoscopy because I've had about 16 and he thought the blood would be sufficient.

Anyway, I just wondered if other people have been diagnosed via saliva and blood and if that would be adequate. Thanks.

Sigrid


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



Celiac.com Sponsor (A8-M):



Guest Kathy Ann

I had been sick for about a decade and nobody could figure out what was wrong. My doctor ordered a saliva test from DiagnosTech. Having them also check me for gluten was an afterthought. When the test came back it was the first time I was ever told I had intolerances to gluten. DiagnosTech told me that false negatives WERE possible, but that a properly done saliva test was nearly 100% accurate when the results are positive. After that, I did the enterolab tests and they agreed. So I was actually first diagnosed using a saliva test. I also took blood tests, but had already been gluten free for a few months when I did. So they came back normal. I don't think the blood tests mean much unless you have advanced gastro problem.

fontgirl Rookie
I had been sick for about a decade and nobody could figure out what was wrong. My doctor ordered a saliva test from DiagnosTech. Having them also check me for gluten was an afterthought. When the test came back it was the first time I was ever told I had intolerances to gluten. DiagnosTech told me that false negatives WERE possible, but that a properly done saliva test was nearly 100% accurate when the results are positive. After that, I did the enterolab tests and they agreed. So I was actually first diagnosed using a saliva test. I also took blood tests, but had already been gluten free for a few months when I did. So they came back normal. I don't think the blood tests mean much unless you have advanced gastro problem.

Kathy Ann, that's really reassuring. Thanks so much for that. I know that my results were in because I got a statement from DiagnosTech asking me to contact my healthcare provider. Fingers crossed! It's kind of a no-win situation for me in that it's bad news if I have it and it's bad news if I don't. I'm afraid of the starving to death on the program because I can't add in new carbs because of my low blood sugar so this means eliminating my whole grain bread and Rye cracker. OTOH, maybe I will get an answer to the reason why I cannot stabilize my blood sugar and have all of my chronic fatigue, headache, feel like crap symptoms all the time.

I really hope that you're feeling better now -- how long have you been on the diet?

Best, Sigrid (very slow to respond to messages these days. Please excuse me. I've had a headache almost every day for a year which is making me mentally ill.)

sunshinen Apprentice
It's kind of a no-win situation for me in that it's bad news if I have it and it's bad news if I don't. I'm afraid of the starving to death on the program because I can't add in new carbs because of my low blood sugar so this means eliminating my whole grain bread and Rye cracker. OTOH, maybe I will get an answer to the reason why I cannot stabilize my blood sugar and have all of my chronic fatigue, headache, feel like crap symptoms all the time.

I really hope that you're feeling better now -- how long have you been on the diet?

Best, Sigrid (very slow to respond to messages these days. Please excuse me. I've had a headache almost every day for a year which is making me mentally ill.)

Actually, you should definitely consider a positive diagnosis a win. It will be hard at first, but as you say, it can explain and FIX so many health problems, including some of the other food intolerances and some of the hypoglycemia. Since you have given up most carbs to begin with, you won't even have that much to sacrifice. And there are gluten free, multi-grain options that should be fine with hypoglycemia. Kinnikinnick even has a bread for those on a candida diet. You might just find that resources for this diet will help you find things you hadn't known about in terms of options. And once things heal up, you may even be able to start eating many of the things you can't eat now.

Good luck!

fontgirl Rookie
Actually, you should definitely consider a positive diagnosis a win. It will be hard at first, but as you say, it can explain and FIX so many health problems, including some of the other food intolerances and some of the hypoglycemia. Since you have given up most carbs to begin with, you won't even have that much to sacrifice. And there are gluten free, multi-grain options that should be fine with hypoglycemia. Kinnikinnick even has a bread for those on a candida diet. You might just find that resources for this diet will help you find things you hadn't known about in terms of options. And once things heal up, you may even be able to start eating many of the things you can't eat now.

Good luck!

Sunshinen,

Thanks for your positive take on the issue. I'm feeling more than a little depressed at the moment -- not that you could tell. LOL. I'm in total food prison but, yes, on the bright side, a positive diagnosis may be a way out of that.

Regardless of what the saliva and blood tests show, I'm going gluten free anyway tomorrow. And it's true that I have eliminated most of the carbs from my diet but whenever I dropp the wheat bread, I feel positively horrible because my blood sugar just doesn't go high enough. I've experimented with 10 -- 12 different types of breads. All of the pure whole-grain or rye give me violent nausea, migraines and bowel problems. They are really bad news.

Anyway, I will just rough it out because attempts with brown rice bread or brown rice crackers -- even very low carb versions -- have been disastrous, so it's easier to go bread free in the beginning.

Are you SURE that there might be a relationship between hypoglycemia and gluten? I would LOVE to believe that because I just can't imagine living my life on these 12 foods. It's insane. About 70% of the world the food is too high in carbohydrates for me; another 10% of foods give me migraines; in the last 10% set off sneezing attacks. Well, you can see how well I'm doing with my math, so I'm just going to sign off and thank you for your help. Also, I hope that you are feeling much better since going on the diet in February.

YF, Sigrid

Guest Kathy Ann
:)

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
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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.