Jump to content

  • 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):

Results, Need Opinions Or Similar Situations

Diem

Recommended Posts

Diem Rookie
Diem
Posted

Okay so I just called my GP office (I so need to get a new one) They had the results but of course I needed to call to get them, God forbid they would call me (typical). Whomever I talked to (recpetionist) Said "oh yes they mailed you out information" Gee thanks for making me wait longer! Anyway back on topic...

 

My lactose test was postive (Go figure, I never even suspected this, but after the reaction to the test I figured as much.) But my Gluten test was all mid to high range but not sufficent to make me positive so the receptionist says. (Again why is she telling me this) So now what?

 

For years I have been dealing with issues and getting results such as GERD (had endoscopy 6 years ago to determine this) IBS (Diagnosed two months ago) Migraines since childhood (No test has shown why) weight lose, currently I am at the lowest weight I have been at since high school (almost twenty pounds since october) Bad enamel on my teeth resulting in various root canals and dental work, hair loss, joint and muscular pain, depression (treated at one time but I didn't like how I felt numb on medicine) brusing, rash, blood in stool, mild arthrits detcted by testing and numbness in fingers and now lactose intolerence. Given, I am new to researching Celiac Disease, but I have to believe that this is waht it is regarless of numbers on my blood work.

 

Has nayone else had this frustration and what have you done? I am going to go ahead and do an elimination test on my own but should I ask for further testing now or wait until I determine it personally, or just go trough to a new GP and start all over. I feel like throwing my hands up and saying I am insane.

 

I have been on a low carb diet for over ten years and don't eat bread or chips and that stuff mostly whole food, meat, veggies, fruit and yes dairy until now.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I wonder if they did any real Celiac tests.  Never heard of them being high but not positive?  I would get a copy and see what they actually did before you go off gluten.  But if you have been gluten-free for years, then it isn't going to be valid anyway.

bartfull Rising Star
bartfull
Posted

And if you haven't been eating much gluten for ten years odds are that the tests won't be valid anyway.

Diem Rookie
Diem
Posted
  • Author

After all my reading I am assuming that too. Especially when I read things that say a person needs to consume the equivelent of 1-2 slices of bread a day, OMG I can't even imagine that anymore. I do know I am tired of feeling sick all the time and ready to start this new life and feel better. I am afraid of how awful i would feel if I did eat that much gluten to get the positve result needed. UGH. Thanks for the comments.

SMRI Collaborator
SMRI
Posted

I would wait to see the numbers before you really decide if you are positive or not.  "Mid to high" what??  If they were a 3 out of 4, ok, but if they were 8 or 9 with 0-4 being negative, 5-9 weak positive, 10+ being positive, I would say that you are positive given your symptoms and eating history.  I'd call today and get an appointment with a GI that specializes in Celiac.

 

Any chance they have an online system to check results? 

Diem Rookie
Diem
Posted
  • Author

Thanks SMRI I called yesterday on the way home from work and told them to schedule the endoscopy. They said they'd call and then let me know when the appointment is. I'm going to go ahead and keep my same diet until I go to the appointment (sigh) I hate feeling this way. 

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...