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

Validity Of The Saliva Test

fontgirl

Recommended Posts

fontgirl Rookie
fontgirl
Posted

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
Guest Kathy Ann
Posted

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
fontgirl
Posted
  • Author
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
sunshinen
Posted
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
fontgirl
Posted
  • Author
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
Guest Kathy Ann
Posted
:)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,836
    • Most Online (within 30 mins)
      7,748
    RyanOB
    Newest Member
    RyanOB
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...