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:
    Help Celiac.com:
    eNewsletter
    Donate

I Found This Very Interesting


Quincypp

Recommended Posts

Quincypp Rookie

Before the doctors brought up celiac for me (still waiting on my results) i heard on the news that in Europe it is part of their regular work up to test for gluten allergies in children. Now - I don't recall if they are looking for the DNA test or searching for the anitbodies or just doing it as an allergy test but found that so interesting. Its a shame in North America it seems so hard to get them not only to test for it - but so hard for doctors to even consider gluten as a cause. I don't have anything diagnosed yet - but have been suffering from low iron for years - put on supplements, shots and no help. My hemaglobin got so low once I was very close to transfusion level. However my dr just kept pumping me with iron and not looking for a cause other than blaming it on heavy periods. Finally had a dr who ordered a check on my folate - go figure low in folate and just over minimal values for B12 - even though I eat a diet very high in folate and iron.

Anyways -thought I'd share that - i hope it becomes common place here to help others avoid what we go through prior to diagnosis (official or self diagnosis).

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome Quincy!

I agree wholeheartedly. It is my belief that anyone with gastro, autoimmune or nonspecific symptoms should be tested for Celiac Disease. So many of us would have been helped much earlier in life if this was commonplace.

Hope your results are clear. Do you know if your doctor ordered a complete Celiac Antibody Panel? If so, regardless of the result it would be wise to remove ALL gluten for at least three months (six is better) to monitor symptoms and re-draw your deficient nutrients.

Good luck to you :)

Link to comment
Share on other sites
megsybeth Enthusiast

I think there are lots of health professionals who should be playing a part. I think I've had celiac for at least thirty years undiagnosed. I went to doctors over the years for many different pains and issues that might have been a flag. But I know that knowledge was really limited of the disease so I can sort of get over it. But what really kills me is that less than two years ago I saw a fertility specialist to conceive with my second son after a year of trying. I knew from charting that I was not ovulating (I got lucky the first time I got pregnant naturally with my other son because I was barely ovulating then but thought my thermometer was broken). I think she should have tested me for celiac just based on unknown infertility (or at least asked about my overall health to see if I might warrant testing).

I'm lucky to have two wonderful boys and my second son seems very healthy. But the fact that this doctor gave me clomid and helped with a pregnancy that could so easily have ended in horrible tragedy really gets me angry.

I actually plan to write to all of the health care professionals my son (also celiac) and I have delt with over the years who would have benefited from knowing. Not an angry letter but some articles on how celiac relates to their specialty, and how it was presenting for us when we saw them. I think if we all did that, it might be a start.

Link to comment
Share on other sites
shadowicewolf Proficient

I wish they would do them as a manditory test for children who had vitamin issues (long story short, i had calcium laying problems as a child, my heel was jaggad at one point because of it).

Link to comment
Share on other sites
ButterflyChaser Enthusiast

As a European who is living in the US, and who has had experiences with health systems in both contexts, what I noticed is that US doctors are much more prone to attribute physical symptoms to psychic disturbances. I got months of "it's all in your head," "you're just stressed out: here, takes some valium," "you have an ED," and it was only once I went back to the EU that someone bothered with immunologic tests. I still wonder why they use such procedure.

I was a total wreck, psychologically as well, and started seeing a psychiatrist when I was there for help coping with chronic disease. He calmly looked at me, and said: "I first want these and these and these tests to figure out what's going on physically; only afterwards we can ponder whether it is necessary to treat the psyche, and how." In other words, he wanted to see first what physical imbalance was causing the psychological imbalance, and fix the body first, and work on the mind accordingly.

As for allergies/intolerances: I have been tested multiple times over the years, so I have seen reactions (egg whites, kiwi, pineapple) disappear after a few years of discontinued use. My allergologist tested me for a gazillion things last time, and I spent a whole day in the allergy division. I was having reactions to certain types of cheese and she tested me with samples of THAT specific cheese. Nothing came up, but since the symptoms persist she didn't say it was "all in my head," but explained to me that there are 1) reactions to industrial food additives that may be very difficult to catch; 2) one-off real reactions in spite of lab results; and 3) some cases, like mine, in which it is an "accumulation" issue: my body reacts to repeated exposure to certain substances, and the testing is not able to reveal that. It does feel a bit better for a patient to know that sometimes it's just difficult to diagnose.

Link to comment
Share on other sites
Quincypp Rookie

Welcome Quincy!

I agree wholeheartedly. It is my belief that anyone with gastro, autoimmune or nonspecific symptoms should be tested for Celiac Disease. So many of us would have been helped much earlier in life if this was commonplace.

Hope your results are clear. Do you know if your doctor ordered a complete Celiac Antibody Panel? If so, regardless of the result it would be wise to remove ALL gluten for at least three months (six is better) to monitor symptoms and re-draw your deficient nutrients.

Good luck to you :)

Unfortunately i don't know what she is testing - or I should say what she is looking for -she just said that she was testing me for celiac - my concern as I have mention in other posts is I have been wheat free since april - not gluten free as i have learned it is hidden in a lot things - but havne't consumed a lot i suspect. My inflammatory markers have gone down to half of what they were - still very high - but are lower than before. I am waiting her phone call - been a week since she did the test. She said she'd call me with the results (save me the long trip and then next steps - i forgot to ask how long that would take) I also had graves - 1991 i was diagnosed - had the radioactive idodine treament in 92. At my last blood work my thyoid levels were also out of whack - slightly hyper however since i have lost 50pounds (trying) i can blame that as dosage usually changes with my body weight.

Thanks - I'll post what I find out!

Link to comment
Share on other sites
mushroom Proficient

We look forward to your results. Please be sure to post the test, your score, and the ranges the lab uses (negative, equivocal/weakpositive, positive) :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,154
    • Most Online (within 30 mins)
      7,748

    Ohwowitsgluten
    Newest Member
    Ohwowitsgluten
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...