Cat Scan/spleen Involvement

[anniej55]

Hello,

I am recently diagnosed with Celiac - about a week ago from blood work. I know, should have had a biopsy but it wasn't suggested. Least of my worries ...

It seems my liver enzymes were abnormal (which led to all the blood work) and platelets low (82). The GI doc and primary care seem to think this is from the celiac; I had a CAT scan done yesterday (with dye). But I'm pretty nervous .... anyone else ever have this done? I keep thinking they're looking for cancer and just not telling me, although they have assured me that it's just to see if the spleen is enlarged. The colon was looked at too, and I will be having a colonoscopy in June.

And diet? It wasn't good to begin with, although I never had any symptons until these past few weeks. This was all found through bloodwork for a regular check up (should have just passed on it!). I'm pretty much just eating Tostitos, as I found they were a "safe" food on a celiac website. At least until I can figure out exactly what to eat. My primary care has given me 15,000 units of vitamin D 3X a week .... and will be having a bone density test over the summer.

Any advice would be appreciated. I'm basically freaking out about the CAT scan and my head going eight million ways about cancer. I know lymphoma can be associated with celiacs - how prevalent is that?

Thanks!

Ann

[gf4life]

Hi anniej55,

Welcome to the board! I know right now you are quite overwhelmed, but it will get easier. Just stop and breathe! And eat a lot more than just tostitos! Here is a short list: all fresh fruits and veggies are naturally gluten free. Plain meats, poultry and fish are gluten free (add your own seasonings, don't get preseasoned or marinated). Rice and beans are gluten free. Eggs, block cheeses are usually fine (not bleu cheese though), Yoplait yogurt is gluten free. There is a really good list of mainstream foods that are gluten free, but you still need to learn how to read the labels so you can double check that the ingredients haven't changed since the product was placed on the list. The link to the list is:

Open Original Shared Link

celiac3270 posted a list of helpful links that he got from the Delphi forums, you can find it here:

Open Original Shared Link

Now, as for the elevated liver enzymes, I had a severe abdominal pain attack last November which sent me to the ER. The (totally incompetant) ER doctor said he assumed it was gastritis and was going to send me home if the labs were normal (like he assumed they would be). Actually, he said he was going to take a nap and if the labs were normal then I wouldn't see him again that night! Well they had to wake him up when my liver enzymes came back quite elevated and they had no idea why. They were about to send me for a gallbladder ultrasound, when the nurse reminded him that I had my gallbladder removed 5 years ago! So he shot me up with pain killers and sent me home. My doctor searched for months and never found the cause. We kept repeating the blood tests and watched the number slowly go down to normal limits, but still no answers. I've had every test done on my intestines/abdomen except the CT scan. The doctor said he will order that if the pain comes back. The severe pain lasted for a few days and then slowly got less and less. It was located on the upper right side (where the liver and gallbladder are normally). The pain was finally gone by about 5-6 weeks. So I don't know if this helps at all, but that is my story and I want you to know that you are not the only one with elevated liver enzymes. I don't know what causes it, but I've seen others here talking about their elevated liver enzymes, too. Most don't have an answer for it, but I haven't seen any of us get diagnosed with cancer. Your chances of getting cancer are increased if you do not follow the gluten free diet, but if you stay on the diet your risk level goes down to the same as the rest of the people on this planet!

Feel free to ask any questions you need to ask. We are all here to help you. We've been there too. It is a hard adjustment at first, but soon it will become second nature to you.

God bless,

Mariann

[anniej55]

Thanks for the response. I am happy that I found this board. The liver enzymes were slowly going down to acceptable levels ... it's the blood platelets they are concerned about. And thank you for the cancer information; I'm a librarian and ferreting out information is what I do. So I have read every website on celiacs, medical included, for the past week. LOL - I'm asking my doctors question they are not prepared to answer. And yes - once this initial thing is figured out I'm going looking for a doctor that is more knowledgeable on celiac's. My primary actually said I could have stuffing at Thanksgiving if I went gluten free for the rest of the time. No yelling - I know that's not possible.

As for food? Well .... I don't like fresh fruit. I am eating canned peaches and pineapples. And I'm not a huge eater - used to be 1/2 bagel in morning, granola bar at lunch and then a little supper. No, I'm not thin. Just chalked it up to approaching 50 and body changing.

Thanks again everyone. Hopefully I'll get the test results today and I'll be able to rest easy.

Ann

[plantime]

If they are doing a cat scan to look at your spleen, then that is what they are doing. Do not panic, it is common for cat scans to be done when there is abdominal pain. I had an abdominal cat scan last summer, and it did show that my spleen was enlarged. One of the many tests done last summer also showed that I had recently passed a gallstone. There are many things that a ct scan will show. Celiac interferes with our bodies so much! Let us know what you find out, and join us any time for conversation and learning!

[anniej55]

CAT came back good - spleen was on the large size of normal, but nothing they were worried about. As for the platelets being low, Prim Care said she'd watch it and send me to hematologist in the future .... and I need to go back for another CBC panel next week. They keep taking blood from me, of course the platelets are low!

I don't have any abdominal pain ... I was feeling great and just went for a routine check up. Looking back I do see that I was more tired then usual .... and was sleeping deeply, which wasn't my usual pattern. I must be getting better, cause I'm back to not sleeping so well.

Oh well ... the diagnosis could have been so much worse, so I'm just rolling with the punches and trying to do the gluten-free eating thing

[gf4life]

Canned fruit is fine, just try to stick with the fruit in fruit juice, rather than the fruit in syrups. My kids like fresh fruit, but sometimes it isn't available (or looks nasty at the store!) (or costs a small fortune...) so we keep a stock of canned fruit on hand.

You could get some gluten-free bagels to have for breakfast, and some gluten-free granola or other bars, and still have a nice dinner. You don't really have to change the way you eat, just change a few of the foods.

It is good that you like to research and read, because you will find yourself doing a lot of that now, at least for a while. And the vast majority of us here know infinitly more than our doctors in regards to Celiac!

God bless,

Mariann