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

Too Much Testing?

jramfischer

Recommended Posts

jramfischer Rookie
jramfischer
Posted

I'm new to all of this, but would welcome some advice! About a year ago, it was discovered that I have osteoporosis (at age 43), from that a Vitamin D deficiency was found. Then the endocronologist did a Celiac blood panel and found that my tTG level was above 50 (he said around 6 is "normal") which suggested celiac disease, so he sent me to a gastroenterologist. The gastro did a biopsy (results negative), Promethius Genetic Test (one positive gene, one negative) and just recently a capsule endoscopy. Am I just being submitted to too many procedures to find a diagnosis, or is this normal? Thanks in advance for your feedback!

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
I'm new to all of this, but would welcome some advice! About a year ago, it was discovered that I have osteoporosis (at age 43), from that a Vitamin D deficiency was found. Then the endocronologist did a Celiac blood panel and found that my tTG level was above 50 (he said around 6 is "normal") which suggested celiac disease, so he sent me to a gastroenterologist. The gastro did a biopsy (results negative), Promethius Genetic Test (one positive gene, one negative) and just recently a capsule endoscopy. Am I just being submitted to too many procedures to find a diagnosis, or is this normal? Thanks in advance for your feedback!

Hi....welcome to the board. :)

My opinion is that no further testing was needed once you came back with a positive tTG. The tTG is specific for Celiac. You've been gene tested so you now have even more proof of Celiac....but the tTG was more than enough.

Some Dr.'s want to see a postive biopsy to make the diagnosis but a negative biopsy does NOT rule out Celiac. The biopsy is a "hit or miss".....you can have damage in areas other than where the samples were taken. The biopsy is unreliable and only gives a clear answer when it is positive.

You should be gluten-free based on the results of your bloodwork.

rez Apprentice
rez
Posted

With a tTG over 50, I think the gastro didn't take enough samples and this is a classic example where they missed the patchy damage. I would go on the gluten-free diet and then have them recheck your tTG after 3 months, then 6 months to see if it came down.

happygirl Collaborator
happygirl
Posted

Looking at the overall picture:

+ gene, + tTG (highly specific for celiac disease), osteoporosis (related to Celiac because of malabsorption), vitamin deficiency (related to Celiac because of malabsorption.

I think you already have a diagnosis. Just because the doctor has not "given" you one does not mean you don't have Celiac. Biopsies are not always reliable because they can miss damage...Celiac is a patchy disease. Did your GI take multiple biopsies in multiple sites or did he only take one?

Regardless of the answer, I would be more than inclined to say that you have Celiac.

Welcome to the board! We hope we can help and provide answers and support! :)

Laura

jramfischer Rookie
jramfischer
Posted
  • Author

Wow! Thanks so much for confirmation of what I'd already thought. In answer to the question of multiple biopsy sites...I think he only did one, but I'm not certain. He ordered the capsule biopsy to check for patchiness (if that's a real word!). Anyway, I decided this morning, before I posted that I'd go gluten-free even though I don't have an "official" diagnosis. To be honest, I'm a bit afraid and it seem a might overwhelming, but I'm guessing this forum will be a great support system from what I've seen already! Thanks again.

Creative-Soul Newbie
Creative-Soul
Posted
To be honest, I'm a bit afraid and it seem a might overwhelming, but I'm guessing this forum will be a great support system from what I've seen already! Thanks again.

Welcome to the forum! You don't have to guess :lol: , you will find a lot of support and frindly advice here. We've all felt overwhelmed in the beginning as it feels like severe information overload, but it will get easier as you get the hang of things. Feel free to pore through all the old posts and ask any questions that you may have; there's always someone who will know the answer...or at least be able to point you towards it!

rez Apprentice
rez
Posted

Again, have them repeat the blood test in 6 months. Then, the DOCTOR should even give you the diagnosis.

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

Celiac.com Sponsor (A8-M):


GlutenWrangler Contributor
GlutenWrangler
Posted

I agree, you should have already been diagnosed. Time to start up on the diet! Good luck.

-Brian

tarnalberry Community Regular
tarnalberry
Posted
Wow! Thanks so much for confirmation of what I'd already thought. In answer to the question of multiple biopsy sites...I think he only did one, but I'm not certain. He ordered the capsule biopsy to check for patchiness (if that's a real word!). Anyway, I decided this morning, before I posted that I'd go gluten-free even though I don't have an "official" diagnosis. To be honest, I'm a bit afraid and it seem a might overwhelming, but I'm guessing this forum will be a great support system from what I've seen already! Thanks again.

That route of testing sounds totally standard (less than many doctors would do, actually). And I agree, given the picture that's already been taken, it's *fabulous news* that you're going gluten free. Welcome to the board!

Guest lorlyn
Guest lorlyn
Posted
That route of testing sounds totally standard (less than many doctors would do, actually). And I agree, given the picture that's already been taken, it's *fabulous news* that you're going gluten free. Welcome to the board!

Hey I am also new at this gluten free diet. Was wondering by being offically diagnoised by your doctor what does it do to future life insurance prices and pre exesting conditions for getting new health insurance in the future?

tarnalberry Community Regular
tarnalberry
Posted
Hey I am also new at this gluten free diet. Was wondering by being offically diagnoised by your doctor what does it do to future life insurance prices and pre exesting conditions for getting new health insurance in the future?

I can't speak from personal experience, as my coverage for both is through my workplace. We have had members here who have had issues with private health insurance companies denying them due to a celiac disease diagnosis (or charging much higher rates), though it really doesn't make any sense, of course. It may well stand to reason that life insurance would be the same way, though I don't recall reading anything specific on that one.

Guest lorlyn
Guest lorlyn
Posted
I can't speak from personal experience, as my coverage for both is through my workplace. We have had members here who have had issues with private health insurance companies denying them due to a celiac disease diagnosis (or charging much higher rates), though it really doesn't make any sense, of course. It may well stand to reason that life insurance would be the same way, though I don't recall reading anything specific on that one.
Just curious but my daughter dotor told us that celiac disease is one of the few disease's that goes away after going on a gluten free diet. So my question is does she have to disclose it on future health and life insurance forms in the future. Thanks
tarnalberry Community Regular
tarnalberry
Posted
Just curious but my daughter dotor told us that celiac disease is one of the few disease's that goes away after going on a gluten free diet. So my question is does she have to disclose it on future health and life insurance forms in the future. Thanks

Celiac disease - the condition of having an immune system that reacts to wheat - does not go away. The damage and the symptoms and the manifestation of the disease go away as long as you treat it (stay on the gluten free diet). IANAL*, but I think you still need to declare it. Other conditions you have that are completely controlled (such as diabetes that is completely controlled by diet and exercise) but haven't been cured or gone away still have to be disclosed.

* I am not a lawyer

larry mac Enthusiast
larry mac
Posted
..... The gastroenterologist did a biopsy ....Promethius Genetic Test .... and just recently a capsule endoscopy....

jrf,

Doesn't sound like too much testing to me. The capsule test was needed because of the negative biopsy, but I don't see anywhere in this thread that you've said what the results of the capsule endoscopy were. Have you received the results yet? If it was me, I wouldn't make any changes to my diet until I consulted my doctor. Once you go gluten-free, you'll throw a huge monkey wrench into any further testing, should any be neccessary at this time. He's the doctor, he's the expert, you're paying him to find out what's wrong with you. I'ts probably reasonable to assume that he's very close to giving you the bad news/ good news official diagnosis, and giving you the green light on the gluten-free diet. But you want to wait for the results of the capsule test you paid so much for.

Do you have a follow-up appointment? You might want to at least give him a call.

best regards, lm

jramfischer Rookie
jramfischer
Posted
  • Author

I just received the results from the capsule endoscopy...all my villi are in tact. The GI says I am a "mystery" and isn't sure what is going on and isn't recommending any more testing (which is fine). There are so many factors that would seem to point to a gluten sensitivity: Vit D and B12 deficiencies, osteoporosis, elevated tTG, gastrointestinal issues....Am I way off base?

num1habsfan Rising Star
num1habsfan
Posted

I honestly myself cant say I know when you do or dont got Celiac, because all these details you guys have talked about tests and levels, etc...its jibberish to me :lol: . All I can say is that you dont need a diagnosis from a scope to start on the diet...if the doctor suggests it, Ido it, I did it (and no biopsies/blood work ever did show anything, but only because i was already on the diet).

~ lisa ~

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.