Terrified with diagnosis, in denial, how to live & eat?

[Nfitz321]

I was diagnosed with celiac disease at the same time as I was diagnosed with end stage non alcoholic liver disease - it was so causally & matter of factly dropped like it was an ear infection or strep throat. I was also told “oh by the way” that I have aprox 10 yrs before my liver fails and will need a transplant. That was May 11, 2023. I have been living in denial about both conditions ever since. I am 50yo, also w ADHD, pre-diabetes, depression, PTSD & binge eating disorder. My days are spent eating nothing because of either not knowing what to eat, nothing sounding good or afraid to gain weight (wont put a “good” liver in a “bad” body). I drink water but not a ton. By the end of the day Im starving & exhausted so its convenience foods or snacks in evenings. A dietitian/nutritionist was not helpful & essentially showed me how to google gave me a handout. That was fun.  Im very picky - bland and simple -  and gluten free is expensive so Im afraid to spend $ to end up disliking whatever it is or it end up hurting my stomach etc. Curious if there are any tips or tricks about what and how to eat when celiac exists with other conditions… everything is so overwhelming (hence 2yrs of denial) so any advice or direction for any and all the things would be very appreciated, thx

[trents]

Welcome to the celiac.com community, @Nfitz321!

I wonder if there is a connection between the development of NALFD and long term undiagnosed celiac disease. We now know that one of the atypical symptoms of celiac disease is elevated liver enzymes. It occurs in about 18% of celiac cases. In fact, years of mildly elevated liver enzymes was what eventually led to my being diagnosed with celiac disease. It took 13 years to get there, however as this was not common knowledge in the medical community back then. I first became aware that my liver enzymes were elevated in about 1987-88 when I was turned down as a blood doner but the reason for the elevation was not discovered until about 1990-91. My GP tested me for all the hepatitis variants and everything else but celiac disease and came up with no answers. I was the "silent" celiac type with little or no GI distress so he never thought about celiac disease. But I was also by then falling out of normal range in some other labs like hemoglobin. In desperation I made an appointment with a GI doc and he tested me right away for celiac disease. Within 3 months of beginning the gluten free diet my liver enzymes had normalized. Twenty five years later my liver is in good health, though it is about 20% larger than normal. Not sure if that is from the years of undiagnosed celiac disease or not. I often think that it could have turned out different. Please forgive the long diatribe. But in sharing my experience I hope to impress upon you the importance of taking the need to eat gluten free seriously when you have celiac disease.

What kind of support systems do you have? Do you have loving, supportive people in your life or are you alone? Do you belong to a faith community? It just really sounds like to me you need a good dose of love, hope and encouragement.

Concerning help with gluten free food choices that are affordable, eating gluten free doesn't have to be expensive if you make wise choices from within the range mainline food products that are naturally gluten free. It does get expensive if you rely heavily on the specifically "gluten free" segment of food industry products which, by the way, are often largely devoid of nutritional value because gluten free flours are not required to be enriched with vitamins and minerals. 

I think the key to eating safely and economically as a person with celiac disease is to chose from among main stream food products that are naturally gluten free and fresh (as opposed to highly processed and pre-prepared). So, things like fresh meat, fresh vegetables and fresh fruit, milk. As much as possible, avoid packaged food products with a long list of ingredients. Keep it fresh and simple. When you buy packaged, bottled or canned stuff, read labels carefully. Start with the allergen list and look for "wheat". In the longer ingredient list, look also for barley and things made from barley or wheat. Wheat, barley and rye are the three gluten containing grains. Especially be wary of canned soups. Almost all canned soups (even Campbells tomato soup) contain wheat starch as it is commonly used as a thickening agent. Most soy sauces contain wheat. 

There is a real education curve involved in learning to eat truly gluten free as opposed to just eating "mostly" gluten free. Wheat and barley are found in so many places you would never expect. Eating "mostly" gluten free is not acceptable when you have celiac disease. 

Also, there may be a celiac support group in your area. These are often helpful for educational purposes and for sharing gluten free recipe ideas . . . and just for encouragement in that they help you feel not so all alone.

Finally, I am including this link that may be helpful: 

God bless!

Edited Saturday at 10:51 PM by trents

[cristiana]

Very helpful advice from @trents

I just wanted to chip in to say I had elevated liver function tests prior to and some months after diagnosis.  Namely raised immunoglobulins at a level of 41, when the cut off for normal in our local lab was 35.    

I was quite scared all this time, esp. when my GP didn't know what she was dealing with, and even thought I might be seriously ill because I was also anemic.  But interestingly, when I finally got to see a gastroenterologist he said to me that although what I had wasn't common, raised immunoglobulins happen in coeliacs and not to worry.  And in a few months my levels came back to normal. 

Edited Saturday at 07:31 PM by cristiana