New And Worried

[kelly97]

Hi All, I was diagnosed last Monday with Celiac Disease. My oncologist sent me to a GI doctor to do further investigation, so I was double scoped (looking for tumors). The biopsies the doctor took showed duodenal mucosa with abnormal villous architecture and increased intraepithelial lymphocytes. And my colonic mucosa with crypt architectural distortion with no evidence of colitis. Essential, he says I meet the gold standard for celiac disease. My oncologist is sending me for another CT & I also have to do a capsule camera swallow test.

I'm just worried. I've lost 25% of my body weight and continuing to go down. I currently only weigh 93lbs. They say I have malabsorpsion. I'm currently taking pancreatic enzymes since May. And just switched a week ago to gluen-free. I've been seeing an oncologist since May - my ct scan in Apr showed multiple reactive mesenteric lymph nodes with stranding, and hypoattenuated lesions/cysts on my liver. And I was diagnosed with MS a couple of yrs ago. I have constant fatigue with off and on fevers and all sorts of other symptoms.

I just can't help but wonder if all of this is related.

Does anyone else have mesenteric lymph nodes reactive or enlarged from Celiac Disease? Or have stranding in their mesentery from it? Not sure if it's related to the probable cancer or if Celiac's could cause it. And not sure how long I've had Celiac's so...as I've read - it could cause intestinal cancers?

Thanks for helping,

Kelly

[1desperateladysaved]

I think you are on the right track and would encourage you to keep going. I think a gluten free diet can help you. Learn all that you can and read every label. I hope soon you will be writing to say that your health is improving.

Diana

[rosetapper23]

Please send me a personal message, because I may have information that could help you. I have celiac disease and also have metastatic cancer to my lymphatic system.

[GFinDC]

Hi Kelly,

I don't have those issues but I do know that celiac can affect any part of the body, including the liver. Weight loss is a classical sy6mptom of celiac disease due to the malabsorption,, although some people gain weight also. The good news is that many times just changing your diet will resolve many celiac related symptoms. Here are a couple links with reference information.

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Liver Disease and Celiac Disease

You might want to watch this video by William Li. He has done research that suggests diet can affect the development of cancer and possibly prevent it. There is also an Eat to Defeat Cancer website for diet tips. It is not a gluten-free diet though, so you would need to be aware they are sometimes recommending things we can't eat. Celiacs need to avoid eating wheat, rye and barley. Sometimes people also react to oats. Starting the gluten-free diet can be confusing. But it is simpler if you stick with whole foods for a few months at least. The labels on whole foods say things like "chicken" or potatoes" or "green beans" and nothing else. Well, sometimes the frozen veggies say "green beans, water, salt". That is ok. Three or fewer ingredients is generally a good thing. After you have been on the gluten-free diet for a while you can add processed foods like gluten-free bread, and gluten-free this and that. A simple diet is easier to understand and troubleshoot than a complicated diet, ie many ingredients is bad.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

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[kelly97]

Thanks Diana, Rose, & Paul. And thanks, Paul, for posting all of those websites that I can go to do research. I'm definitely that kind of person. I always want to know everything I can about my disease.

And Rose, I sent you a personal message - at least I think I did - not 100% for sure how everything works on this particular forum just yet.

I made a wallet size card that I can take with me to the grocery store to look for ingredients that I'm not allowed to have - not just the basics ones like wheat, barley, rye, but the other stuff like modified food starch, dextrin, maltodextrin, etc.

I'm still wondering if Celiac's causes reactive / enlarged mesenteric lymph nodes or stranding...

-Kelly

[frieze]

Other causes of mesenteric lymphadenopathy that characteristically demonstrate central low attenuation at CT are Whipple disease (31) and the cavitating mesenteric lymph node syndrome of celiac disease (32,33). Whipple disease is a systemic bacterial infection. The causative organism is Tropheryma whippelii. Lymph nodes affected in Whipple disease have a high fat content and this is responsible for the low CT attenuation value, usually between 10 and 20 HU. The lymphadenopathy responds to antibiotic therapy, and response to treatment may be evaluated with serial CT. The lymphadenopathy associated with the cavitating mesenteric lymph node syndrome of celiac disease also has a low CT attenuation value. However, these lymph nodes are truly cavitating nodes. These nodes regress when the underlying celiac disease is treated with a gluten-free diet. In cases of celiac disease, the distinction between the CT appearances of the mesenteric lymphadenopathy is important, as celiac disease is also associated with a higher incidence of lymphoma. Mesenteric lymphadenopathy in patients with celiac disease always raises concern about the development of lymphoma, and the cavitating appearance of the nodes leads to the correct and treatable diagnosis.