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Mskedi

Introduction And Thanks

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Last week my sister was diagnosed with Celiac Disease. This was no surprise considering my grandmother had it and my cousin was diagnosed a few years ago. Just about everyone in my family complains of digestive problems and, because of that, several relatives who have had negative blood results have chosen to avoid gluten anyway. They report great improvement overall.

So, when my sister was diagnosed, I decided that I should cut gluten out of my diet despite my negative blood test a few years back. My grandmother had several negative blood tests, and, if I remember correctly, so did my cousin, so my blood test would hardly be definitive. I figure it simply isn't worth it to have the chance of letting things develop to what they did for them, and if I successfully cut all the gluten out, I can never be diagnosed. Besides, by going gluten-free I can share recipes and products with my sister... I really don't want her to have to make this big change alone. My husband fully supports this decision, and had actually been bringing it up long before my sister's diagnosis -- just about every time I complained of having a stomach (technically intestinal) ache after eating.

Over the past week, I have relied heavily on this website, and I wanted to express my thanks to all of you who have posted information, support, recipes, and experiences. It's definitely made this switch seem much more realistic and doable than it sounded at first.

I think I've been most surprised by the number of symptoms related to Celiacs that I was unaware of. Digestive trouble was obvious, and anemia and its related easy bruising also made sense, but depression and skin problems? I never would have thought of those. It will be interesting to see if going gluten-free helps at all in any of those areas. I am most anxious to see improvement in my anemia. I have never once had a normal iron count. I even had a doctor tell me that "some people simply can't absorb iron very well" when no amount of iron supplements helped. After about six months of this, I'll have a blood panel done and see if there has been any improvement.

After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.

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I'm SO glad that you were able to find the help and support you needed here!

Welcome, welcome, welcome!

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Welcome, I am another blood negative celiac so I know how difficult the diagnosis process can sometimes be. As you have seen you found a great place for info and support. If you have any questions or just need to vent we are here for you. I hope you are feeling better soon.

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Welcome! This forum has helped me a zillion times. At first, I just read and read. It not only taught me the ins and outs of going gluten-free, but also kept me from feeling so alone in the world. People don't know much about celiac's- I know I didn't before I got it. Hang in there and feel free to ask questions- even if you think they're dumb ones!

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After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.

Hey - WELCOME!

I know what you mean -- I am newly diagnosed and this board is SO helpful. Can't wait to hear some of those vegetarian recipes!

Good luck

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I thought I'd update since I've been just about a month gluten-free now.

The difference is pretty drastic. First off, my scalp isn't itchy and scabby anymore at all. Who knew? Also, digestive troubles are a thing of the past but for two recent accidental glutenings (the reactions to which were so severe that I'm pretty sure I made the right decision). I feel GOOD, and now that I've successfully made a gluten-free flour tortilla (I always said I liked corn ones better, and then the minute I couldn't have flour ones I started craving them), I don't feel deprived in the least. I'm actually having a lot of fun messing around with recipes and de-glutenizing them. It probably helps that the teaching year doesn't start for another month, so, except for the classes I'm taking, I've got a good chunk of the day to play around in the kitchen. I think I'll have mastered a pretty good set of yummy staples by the time I have to start packing my lunch again.

I've been reading a lot and getting more informed, and my sister is doing really well with the diet. So far, so good.

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Oh! And I've been sleeping through the night! I haven't done that in ages!!

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Happy to hear your family is doing so well. I just wanted to welcome you to this corner of the Celiac world. Its a good place to be!

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    Okay, thanks. Re: MTHFR - I don't really know yet... I only started reading about it yesterday and it is pretty overwhelming. But it does seem to be common advice that if you have a close relative with it you should be tested, and I guess having 2 copies of the "C" variant, as my sister has, is the "worst" variety of it.  It came to light for her when she was going through infertility and miscarriages.  They discovered that her homocysteine was high, which led to the MTHFR testing. So that is one thing I know I would then want to proceed to do, if I do have it - get my homocysteine tested. My dad died of early-onset Alzheimer's, and apparently there is a link between high homocysteine as well as the MTHFR mutation and Alzheimer's. It also seems like it would be worth knowing if I have it since it could be the cause of my lower levels of B12. And I guess maybe I would need to start taking methyl-folate? I mean, to answer your question, I am not entirely sure what I will do if I do have it.   Probably read a lot more about it... and take supplements like methyl-folate if I really think I need to.  Check my homocysteine & control that if I need to, hopefully to lower my risk of Alzeheimer's.  It seems like a frustrating area because there appear to be limited official medical websites that really even talk much about it (so far).  I have found one article on the NIH that focuses on the link with high homocysteine. I already eat a very healthy diet.  Whole grains, lots of fruit & veg, mostly organic.  I am a vegetarian except for very rare seafood. I avoid processed food and, above all, foods with added sugar...  To me, sugar is by far the worst culprit in the SAD.  I think RA has been ruled out by my 2 negative Rheumatoid Factor tests (one done several years ago, one just this year at my physical).  Also, the way this started in my elbows, and was really only there for years, is just... weird... and definitely doesn't really fit with arthritis.  And there is no swelling to speak of, just mild pain - sometimes aching, sometimes burning, sometimes sharp...  It may or may not fit with any systemic diagnosis versus a mechanical one, but nowadays I do also have pain in my hands, feet, and knees.  So then I think, well maybe it is/was something systemic, but it was worse in my elbows for some mechanical reason but now has progressed elsewhere.  I thought Crohn's was just digestive?  (Of course, many people think that of celiac.)  So I haven't really investigated that one much. My ANA was retested and is back down to "negative," so I think that pretty much rules out lupus.  I believe fibromyalgia is still on the table. Anyhow....  Your point is nonetheless taken.  I do want to rule out celiac and go from there.  At this point I'd sure love to find out it is something I could control through my diet!
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