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Hello Everyone~

I was diagnosed with Celiac Sprue on March 26th--- I'm still numb and shock. I'm 49 years old and my world is has been flipped upside down so to speak. A biopsy confirmed the disease, I've already lost 4 lbs this week. I think my body is going into shock. Not much to say just looking for some support and understanding... this is too difficult. I'm depressed and frustrated knowing this is not a temporary situation this is for the rest of my life.

Thank You. :)

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Oh I know...I really do.

I was diagnosed in Feb. It is a shock. I also learned I had Hashimoto's thyroid so I am still reeling too. Let me just say that the BEST thing that happened to you is to kind the wonderful, generous people on this forum.

I hope you fi d it a great help to you too. Hang in there. You are not alone.

Just curious if your labs showed celiac before you had the biopsy.

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Hello Everyone~

I was diagnosed with Celiac Sprue on March 26th--- I'm still numb and shock. I'm 49 years old and my world is has been flipped upside down so to speak. A biopsy confirmed the disease, I've already lost 4 lbs this week. I think my body is going into shock. Not much to say just looking for some support and understanding... this is too difficult. I'm depressed and frustrated knowing this is not a temporary situation this is for the rest of my life.

Thank You. :)

Hello..and welcome!

Most of us go through mixed emotions when DXed. It's good to know there's a reason for your symptoms, and that you can put it into remission. However, the reality that this is a diet change for life is pretty overwhelming at first?

Your brain and body will go through a withdrawl at first which makes your emotions go up and down too. Your first trips to the grocery store may be depressing. It sure was for me!

Focus on what you CAN have, not what you can't.

Shop the outer perameter of the store. That's where the good fruits and veggies, unprocessed meats, fish, eggs, and dairy are. Nuts are a great snack item.

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Hi,

I sure know what you are talking about. It's a surprise to find to your body has permanently changed. One nice thing about celiac though is it is one condition where how you choose to live can make a huge positive difference in your health. You can learn to eat very healthily with a gluten free diet. It's just that what is healthy for us to eat doesn't include all the things that are healthy for other people. There are an awful lot of foods we can eat that are naturally gluten-free. You can find lots of ideas in the recipe section, or by searching for snacks or lunch or dinner ideas.

It can take some time to adjust and learn all the things to avoid. But the sooner you can maintain a totally gluten-free diet the sooner you will recover. One thing that can make it simpler is to avoid processed foods and stick with whole foods that you cook from scratch. A simple diet is easier to understand and there are fewer foods to be concerned about. Also the labels on whole foods are pretty short and don't take a lot of time to read. Things like whole fruit, plain meats with no glazes or breading, whole vegetables etc are good choices.

There is an FAQ at the top of each forums that has some good info.

Yes, celiac is forever, but there are many people on this forum who have had great improvements in their health and symptoms after going gluten-free. It's kind of like diabetes, if you control your diet you can do well. That's easier after doing it a while, just like anything is easier after doing it repeatedly. And we have all or are all going through the same changes so feel free to ask questions and vent as needed. We have probably done the same in the past ourselves. Welcome to our gluten-free club! :)

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    • Your body has been used to ingesting and has been coping with the gluten in its systems.  DON'T PANIC because your body is doing it for you.   Seriously now, the medical field has a technological term defining when a system is used to working a certain way/routine.  When that is either disrupted or changed, it could take a while for the body adjust to a different way of doing things.  Another factor in the increase in symptoms could possibly be that your body is starting to "clean house".  It's trying to get rid of the amounts of gluten hiding out in all its nooks and crannies.  It is going to be a long term process.  It's like cleaning out a vacuum hose or other household item that is just caked with gunk.  The first cleaning gets rid of a large portion of the gunk and ick.  The subsequent cleanings gets rid of more and more ick but in lesser amounts. I thought I was going to go crazy those first few months, but things are a lot better now. (I am about 10 months gluten free).  I still have moments of brain fog and even episodes, but my body is getting closer (and more used to)  to having a cleaner "household item".  I know it's tough at first with the increased onslaught of symptoms, but hang in there.   You may want to keep a journal of all that you ingest or come into contact with for a time to track anything that could exacerbate symptoms.  (For me, my episodes are chemically triggered as well.)  If for some reason a few months down the road, you still have large amounts of symptoms it would be a good idea to visit your GP again just in case there something else that is going on.  
    • I would love some help! After 20ish years of being misdiagnosed with IBS, I was diagnosed with celiac disease (positive blood test for tTG IgA and positive duodenal biopsy) ~ 6 weeks ago. Of course I've gone completely gluten free, and I've been crazy paranoid careful not to ingest any gluten. I've also completely avoided all oats (even certified gluten free) and cut out lactose (due to transient lactose intolerance... because I don't have villi) . But now I feel WAY WORSE. I've had abdominal pain every single day, which ranges from mild aching to severe 10/10 laying on the floor crying and vomiting pain. I understand that it takes a long time to get better, but why would I get so much worse? My best guess is SIBO, but I can't imagine that it could cause such extreme symptoms, can it?  So my question to you fine folks is: did this happen to anyone else? Have you gotten sicker after you changed your diet? Is this normal?  For arguments sake, lets assume that I did not ingest any gluten to cause these symptoms... Thank you for your help!
    • Thanks very much Cyclinglady. Yes, it is Kaiser. I doctor said the GI think it is unlikely to be celiac deisease (he did not say how he came to this conclusion), but he would be happy to do an upper endoscopy for me. I did some look up online, this procedure should be low risk. Still feel a little hesitate while reading the potential risks :(.
    • I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Sorry.  Something is wonky with either my connection or celiac.com! Your results are not specific...borderline.    That is why your PCP should refer you to a GI for further celiac blood tests and a possible endoscopy.  I recognize the lab report form.  Kaiser?  If so, a PCP can not order a full celiac panel.  Only a GI can do so.  Why bother?  Because if you test like me, the TTG tests are always negative.  Request the EMA and the DGPS test via a GI.   Do not be fooled by a lack of abdominal symptoms.  I was only anemic -- no abdominal issues at all.  Constipation is a symptom.  Your PCP is thinking is just historical Classic celiac disease symptoms.   Please email your doctor for the referral if you think you might have celiac disease and want a solid answer.    
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