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

Benefits to getting tested for Celiac?

mom2boyz

Recommended Posts

mom2boyz Apprentice
mom2boyz
Posted

I'm pretty sure I have celiac, and I've probably had it since I was a teenager.  We're a Swedish family.  I believe my aunt also has it (she's a head shorter than her siblings and has always had a hard time keeping food down), and my son who has weight gain issues, and hives that mysteriously and alarmingly come and go.  I have what I thought was IBS, female problems, premature labor, dental enamel problems, and trouble gaining weight.  Realization happened this past weekend, I've been grain & sugar free by choice, eating at home since the holidays, feeling great, and on Friday I had pasta and I'm still feeling the effects.  So I started looking at gluten intolerance, and found myself here.

I'm pretty angry at the medical community, especially on my son's behalf.  He's had problems since birth (probably because I had problems and I nursed him), and they've never really done anything about it.  I don't want to even look at his doctor right now.

I am also hesitant to introduce more gluten in our diet just to get tested for celiac.  I don't want to have diarrhea for weeks by reintroducing gluten, and really I want to get on with my life,  gain 10 lbs and feel healthier.  I really don't see a good reason to test.

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

Celiac.com Sponsor (A8-M):


exshuffleskater Rookie
exshuffleskater
Posted
55 minutes ago, mom2boyz said:

I'm pretty sure I have celiac, and I've probably had it since I was a teenager.  We're a Swedish family.  I believe my aunt also has it (she's a head shorter than her siblings and has always had a hard time keeping food down), and my son who has weight gain issues, and hives that mysteriously and alarmingly come and go.  I have what I thought was IBS, female problems, premature labor, dental enamel problems, and trouble gaining weight.  Realization happened this past weekend, I've been grain & sugar free by choice, eating at home since the holidays, feeling great, and on Friday I had pasta and I'm still feeling the effects.  So I started looking at gluten intolerance, and found myself here.

I'm pretty angry at the medical community, especially on my son's behalf.  He's had problems since birth (probably because I had problems and I nursed him), and they've never really done anything about it.  I don't want to even look at his doctor right now.

I am also hesitant to introduce more gluten in our diet just to get tested for celiac.  I don't want to have diarrhea for weeks by reintroducing gluten, and really I want to get on with my life,  gain 10 lbs and feel healthier.  I really don't see a good reason to test.

I went through this too... same here, my aunt and I have similar health, only mine's much worse.  I wish I could've had a child.  You're lucky in that.  Gratefulness wherever it's found, right?  :) I decided to try and validate teh diagnosis because I took care of a couple of dying and elderly people in my family (somehow I end up the caregiver, I guess bc I have no kids, but I don't mind).  And it became a hassle to get them proper diets when others were cooking for them. Places would claim they did gluten-free, and I'd say, ok you don't have to beperfect about it, but it would be great if the easy stuff were done... like use gluten-free breads from Udi for sandwiches, etc...  and they'd ignore it.  If they had a diagnosis, nobody would've been able to ignore it.  They'd have been bound to do it.  And additionally they'd have been required to avoid Cross Contamination.  That's the boogieman of food service.  Being nice doesn't work when it's balanced against somebody's bottom line. And I think, someday, we all will need help, so having the diagnosis is more of a long term issue.  Plus your child will be more easily tested if you already have the diagnosis.  It's known to run in families.  I wish my mom were diagnosed already (I susupected she had it), and I could claim a family tie to it, it would make doctors listen more. 

mom2boyz Apprentice
mom2boyz
Posted
  • Author
13 minutes ago, exshuffleskater said:

I went through this too... same here, my aunt and I have similar health, only mine's much worse.  I wish I could've had a child.  You're lucky in that.  Gratefulness wherever it's found, right?  :) I decided to try and validate teh diagnosis because I took care of a couple of dying and elderly people in my family (somehow I end up the caregiver, I guess bc I have no kids, but I don't mind).  And it became a hassle to get them proper diets when others were cooking for them. Places would claim they did gluten-free, and I'd say, ok you don't have to beperfect about it, but it would be great if the easy stuff were done... like use gluten-free breads from Udi for sandwiches, etc...  and they'd ignore it.  If they had a diagnosis, nobody would've been able to ignore it.  They'd have been bound to do it.  And additionally they'd have been required to avoid Cross Contamination.  That's the boogieman of food service.  Being nice doesn't work when it's balanced against somebody's bottom line. And I think, someday, we all will need help, so having the diagnosis is more of a long term issue.  Plus your child will be more easily tested if you already have the diagnosis.  It's known to run in families.  I wish my mom were diagnosed already (I susupected she had it), and I could claim a family tie to it, it would make doctors listen more. 

That is a good point, I think I'll talk to his doctor about it.  I really find the whole diagnosis process very unacceptable.  I get that diagnosis is hard to get, but it's not very accurate, and it's potentially damaging.

5143Betty Rookie
5143Betty
Posted

Hi:) I went gluten free over a year ago after I had many celiac symptoms. I feel amazing and decided not to get tested, but I’m rethinking that now. My thinking now is that I’d like to be able to know I’m not causing any damage and not knowing. I’d like to know I’m  healthy for sure, and that I’m doing well avoiding cross contamination also.  I haven’t worked up the bravery to go back on gluten, but I know I’m going to eventually.  Best of luck in your decision. 

cyclinglady Grand Master
cyclinglady
Posted

I completely get your not wanting to do a gluten challenge.  My hubby went gluten free some 17 years ago based on the poor advice of my allergist and his GP.   The gluten free diet worked though.  Then 12 years later, I was diagnosed with celiac disease.  Anemia was my only symptom — no GI symptoms.  

My hubby would be the first to say that I have had WAY more support from medical, family and friends.  It was easy to get our kid tested since I was diagnosed even though she was symptom free.  If she does develop celiac disease, she could be protected at school with a 504 plan.   

Everyone has different issues and circumstances, only you can determine what is best for you and your family.  

lyfan Contributor
lyfan
Posted

Fifteen years ago, perhaps four doctors (two in the US, one in Japan, etc.) really were working with celiac. Ten years ago, it was "Haven't you heard about" and the general medical community may have still be unlearned but they knew where to refer people to pursue this. Now? It is open news, there is gluten-free food marketed in the stores, and research IS being done.

The issue of not being able to have a "proper" diagnosis without gluten followed by a biopsy is ridiculous, yes. The problem is that reliable non-invasive testing simply hadn't been an issue, it requires expensive research and trials. That's not restricted to Celiac.

But perhaps more so, one could ask why even bother with formal testing? If your condition is not celiac, but you are non-celiac wheat sensitive, the "treatment" and procedures to follow are identical. The problem and solution are identical. So, the golden standard testing is pretty much worthless to the sufferer.

If you are reacting to gluten, and removing gluten from your diet solves the problem? That's pretty much all you need to know and all you need to do. As much as I would also like non-invasive conclusive testing and more work towards a "cure" (which may come from vaccination, gene therapy, and other more esoteric approaches) I know that for now, given the state of the medical arts, I don't need a gluten challenge or a biopsy. I need to stay away from gluten, and there's no doctor on the planet who can give me more specific or better advice. So, start with that. Explore other options with patience, as you find out about them. Right now? It is a waiting game.

 

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    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
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...