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I Found This Very Interesting


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#1 Quincypp

 
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Posted 01 December 2012 - 06:30 PM

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).
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#2 GottaSki

 
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Posted 01 December 2012 - 06:40 PM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 megsybeth

 
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Posted 01 December 2012 - 08:01 PM

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.
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#4 shadowicewolf

 
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Posted 01 December 2012 - 08:08 PM

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).
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#5 ButterflyChaser

 
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Posted 01 December 2012 - 08:25 PM

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.
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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.


#6 Quincypp

 
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Posted 01 December 2012 - 08:56 PM

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!
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#7 mushroom

 
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Posted 01 December 2012 - 09:25 PM

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) :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
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Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
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