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

I Found This Very Interesting

Quincypp

Recommended Posts

Quincypp Rookie
Quincypp
Posted

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).

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

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 :)

megsybeth Enthusiast
megsybeth
Posted

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.

shadowicewolf Proficient
shadowicewolf
Posted

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).

ButterflyChaser Enthusiast
ButterflyChaser
Posted

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.

Quincypp Rookie
Quincypp
Posted
  • Author

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!

mushroom Proficient
mushroom
Posted

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) :)

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.

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


  • Member Statistics

    • Total Members
      130,938
    • Most Online (within 30 mins)
      7,748
    Moni74sl
    Newest Member
    Moni74sl
    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

    • Wheatwacked
      Having the will to be healthy but not the willpower

      By Wheatwacked · Posted

      This is not a weakness.  It is a serious threat to your health.  I once read an interview with a representitive of a large company.  He proudly stated that his wheat based product is more addictive than potato chips.  The other issue is cultural.   Perhaps this book will help Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together.  It is published here on Celiac.com free to read.  Chapter 1 starts here Gluten-Centric Culture: The Commensality Conundrum - Chapter 1 - Are You Kidding? At first I ate anything, regardless of nutritional value. Fritos, M&M Peanuts, potato chips, fruit, steak; anything else. Like most habits, it takes about thirty days create the gluten free habit. Pretend you've moved to another country where the food is entirely different.  Don't try to recreate your old diet based from commercial gluten free foods.  Gluten free foods are not fortified, so be aware of vitamins and mineral intake, especially vitamin D.  Vitamin D deficiency is practically a given.  You probably already have deficits from the malabsorption caused by villi damage. Some symptoms respond immediately, others take time to heal.  I counted 19 different symptoms that got better.  Some, like permanent stuffed nose, I was told was normal for some people. Welcome aboard @Crossaint !  
    • cristiana
      Having the will to be healthy but not the willpower

      By cristiana · Posted

      Great advice from @trents.  A couple of other tips. Firstly, always try to have a good stock of gluten-free alternatives in the house so you aren't tempted to give in when there is nothing else available. Secondly,  as you will have noticed, gluten-free bread does taste quite different from regular bread.  But I think it was my GP who said making toast with it makes it taste much more like the usual stuff - and I would agree there. If you haven't already I suggest you give it a try. But remember, you will either need to toast it under a clean grill, or your Mom will need to buy you your own dedicated gluten-free toaster.
    • trents
      Having the will to be healthy but not the willpower

      By trents · Posted

      Welcome to the forum, @Crossaint! Are you living in the same home with your mother? Your experience with the cravings is very common in the celiac community, especially among the recently diagnosed. It might surprise you to hear this but gluten has addictive qualities much like opiates. It plugs into the same pleasure sensors as gluten in the brain and so for some people, there can be a significant withdrawal experience. It usually begins to subside in a matter of weeks but is perpetuated with inconsistency.  I think three major things need to happen for your to get on top of this: 1. You need to understand that more is at stake here than the number of bathroom trips you make if you can't stick to your gluten free diet. There can be some serious long-term health consequences such as osteoporosis, neurological damage, a host of medical conditions related to poor vitamin and mineral absorption and even small bowel lymphoma.  2. You need to help your mom understand how serious this is and how important it is to your long term health to be consistent in eating gluten free. Both you and she need to understand that celiac disease is not just a matter of inconvenience or discomfort from a little GI distress. It is an autoimmune disease that causes inflammation and damage to the lining of the small bowel that can have serious health consequences over time. 3. You need to redirect your mom's baking skills toward creating delicious gluten-free creations. Challenger her with it. Gluten-free does not have to mean "it tastes awful!" One good place to start is with a good gluten-free carrot cake recipe. Another is gluten-free zucchini bread. These are two things that taste just as good made with gluten-free flour as they do with wheat flour. There are a ton of good gluten-free recipes on the Internet. Not everything can be made to taste as good with gluten free ingredients as it does with wheat flour but many things are pretty close. And you know what? After a while, you adjust and many gluten-free foods become the new norm for you. You don't miss the wheat ones so bad anymore. Yes, you may still have flashbacks of "I remember what this or that wheat thing used to taste like and I really miss it" but not so often as time goes on. Check out the relevant sections on this forum for some good recipes and get your mom going on it for the sake of her kid.
    • Crossaint
      Having the will to be healthy but not the willpower

      By Crossaint · Posted

      Was recently diagnosed with Celiac after almost 16 years of suffering. The first week gluten free was amazing, my brain was working, i wasnt as bloated, i even started to not have to use the toilet 12 times in an hour. Excellent! But i keep having uncontrollable cravings for gluten. My mom is an amazing baker, woth no sympathy for my weakness and live for food, so of cohrse i ended up eating a bunch of gluten today. i dont know how to stop, i know its poison but at the end of the day i just feel like i need it. Will be re attempting gluten free tomorrow, but im scared that i wont be able to stop myself from eating the deliciously poisonous devil that gluten is. 😞
    • Awol cast iron stomach
      Diagnosed w Celiacs, but reacting to gluten-free Digiorno Pizza AND Kraft Zesty Italian Dressing

      By Awol cast iron stomach · Posted

      I wanted to say hello, and add that  early in eating gluten free I had  to avoid processed foods due to too many ingredients. I also had additional intolerances that needed time to subside. My team suggested I limit gluten free processed foods, as I was having issues with items with too many ingredients. I see Trents explained some of the culprits when he responded.  I found it helpful to go whole foods  diet. When I need inspiration I found Paleo and AIP (Autoimmune Protocol) recipes helpful to offer variety to my palate.  Often our bodies in the early stages prefer we go whole foods/ minimal processed foods. In turn, I realized I prefer freshly made salad dressing which I still make to this day. My pocketbook also finds making my own has its benefits.    Best wishes.  
×
×
  • Create New...