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dailygrace28

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dailygrace28 Newbie

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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JustNana Apprentice

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.

Bubba's Mom Enthusiast

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.

GFinDC Veteran

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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    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
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