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Before Diagnosis


Kaycee

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Viola 1 Rookie
I hadn't even heard of it until I came home one day and there was a message on my answering machine with my GI giving me my results and saying I was positive for celiac disease. I had to replay the message a few times to figure out what the heck was he saying and how do you spell it???? :blink:

:o He gave you the results on a answering machine!!! :o Wow, our office phones and asks us to come and and see the doctor with something like that! :huh:


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Canadian Karen Community Regular
:o He gave you the results on a answering machine!!! :o Wow, our office phones and asks us to come and and see the doctor with something like that! :huh:

Yep, and to boot it was on Christmas Eve!!!! I guess he didn't want me getting all glutened up through Christmas! LOL!

Karen

mouse Enthusiast

The sum total I knew was zip. I had never heard of Celiac and did not even know what gluten was. My doctor told me to go on the internet and learn as he did not think a nutritionist would know much either. And he knew nothing about how the diet works.

Jestgar Rising Star

I had never heard the words gluten or Celiac. I had a vague notion that some people avoided wheat to reduce inflammation for RA.

celiacgirls Apprentice

My grandmother had celiac disease only she called it sprue. I knew she couldn't have any wheat flour. She was trying to do this diet from a very small town beginning in the 60's. We always had forgotten cookies (meringue), rice krispy treats, and oatmeal cookies at her house. She had some strange flour around, too, :rolleyes: and she ate rice and corn chex. Now I know she wasn't totally gluten-free but she was doing the best she could without the internet for information.

I never connected her problem with me until my youngest daughter had D when I gave her wheat and the doctor mentioned a rare disease where she would have to be on a very strict diet and avoid all traces of gluten. At that point, I was pretty sure it must be my daughter's problem because it seemed like too big of a coincidence that my grandmother had it and my daughter had signs of it. It took 7 years to be fully convinced that it was her problem because her blood tests were always negative but we did try the diet off and on over the years.

We still haven't really been diagnosed other than by Enterolab but we are very strictly gluten-free.

kbtoyssni Contributor

I had a friend mention it a few years pre-diagnosis so I knew what it was, but that's it. I'm lucky she mentioned it, though. I diagnosed myself through an elimination diet and probably would have thought I only had a wheat problem if she hadn't. I'm pretty sure I didn't even know what tortillas were made of. So when my server says "we have wheat tortillas and regular tortillas" I cut them a little slack.

gabby Enthusiast

Count me in as someone who had never even heard of Celiac disease. After decades of being sick and nobody being able to figure out what was wrong with me, I was in the hospital for a battery of unrelated tests and a doctor discovered the celiac by accident. Sort of like: by the way, you know you have celiac disease.

I believe it saved my life.


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    • Marie70
      Wow!! Scott, Trent and Christiana thank you so much for your fast replies!! The information you have shared with me has helped me tremendously.   Thank you for all the articles.  I appreciate you all so much!! I’ll keep you posted in this post.  I will encourage her to get tested.  I feel a little better!
    • DayaInTheSun
      It was gradual, just not being able to catch my breathe like I always had to take a deep breathe even taking a few steps I would be winded.
    • cristiana
      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
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