Looking For Dx Advice

[VW1]

I am wondering if I could have a celiac disease related disease. I know nothing about celiac disease or anything that could be close to it so I am hoping someone here can be of some help. Any advice would greatly be appreciated.

I have been diagnosed with a common form of lymphoma. A CAT scan showed an inflamation in the ileum over 10cm ( 4 inches) and the oncologists suspect it is related to the lymphoma. I have done some reading on recent research and I have good reason to believe that the inflammation is not a result of the lymphoma.

Soon after dx I changed my nutrition somewhat and a subsequent CAT (at 3 mos) showed a reduction in the inflamation by 30% over several cm. The lymphoma also showed a slight regression. I would like to believe it is due to the nutrition changes.

I was not an "unhealthy" eater before but rather changed my diet to focus on foods very high in antioxidents (small fruits, flax seed and oil, green tea, curcumin, yogourt, lots of vegetables, onion, garlic,...) to combat the lymphoma. I now realize it also resulted in a reduction of other foods such as morning toasts, cereals and frequent pasta.

I have had intestional pains in the past ( lower left side) which were about 2 hours previous to significant bowel movements. I did have a "barium wash" (I believe it is called) over 2 years ago that showed nothing.

I have had constipation and diarea type problems but they were irregular. In the last 6 months I have experienced considerable flatulance, noisy bowels, cramps and a bloated sensation. I have had some other less significant symptoms that I can share as well if it can be helpfull.

I used to be a big consumer of whole grain cereal products (probably a very terrible wording for you folks) which I reduced slightly. Because I recently suspected a link with gluten type products I have reduced my consumption to what I think as a "layman" is zero in the last week or so. Interestingly the symptoms have...knock on wood.... disappeared.

I have approached my GP and he does not believe that I should consult a GI.

I would appreciate any comments or suggestions you might have.

Thanks

VW

[CarlaB]

I'd see a GI. I don't know why your doc wouldn't be concerned. You have symptoms, you've had lymphoma.

Keep in mind that if you go gluten-free or even gluten-lite, it can affect the testing. You need to stay on gluten until the testing is done.

[Felidae]

As Carla said, if you plan to get tested you have to keep eating gluten.

However, if you would like to see if going gluten free changes anything then you could try it for a few months. Even if you did get tested, it's possible that you could be non-celiac gluten intolerant (which tests would not show except a gene test) or you could have celiac. If you have either, the gluten-free dietary change may make you feel better. It won't hurt you to try the dietary change but it is definitely a choice you have to think about.

[super-sally888]

Hi -

Glad you are seeing some benefit from the diet changes. Sounds like you are doing really well with 'healthy' diet.

Actually, the gluten free diet is very healthy - particularly if you eat natural whole foods rather than relying on gluten substitutes (and especially if you don't tolerate gluten). So actually, if you don't care so much about a 'diagnosis' - you can just go ahead with it and see how you go.

I disagree with your dr about no need to see a GI. They definitely should be ruling out other problems. Though you may or may not you get a clear diagnosis for celiac / intolerance - there is high false negative (but false positive is not known) - the best indicator is how you feel when you get off gluten.

Welcome to the forum.

Sally

[VW1]

Thanks for the quick response.

Getting to see a GI is not easy. It was a request turned by my GP and Oncologist. Both have clearly stated to me there is no scientific evidence that nutrition is relevant.

Is there a connection between lymphoma and celiac disease?

Which of the symptoms are significant?( Please remember this is gluten 101 for me)

How long would it normally take to see a change in symptoms (you mention months)?

Thanks

VW

[happygirl]

This worries me that medical professionals are giving you incorrect medical information.

Either print this info out and bring it to them, or find a new GP/GI that is familiar with this. Not only do you need a GI, you need a GI who knows something about Celiac (two entirely different things!) Often, the best way to find one is to 1. ask on this board or 2. contact a local celiac group and ask who they recommend. NIH has launched a Celiac awareness campaign...not among patients...but among DOCTORS because so few know anything about it.

I am certainly not saying if/if not you have a problem with gluten, but given your history AND your symptoms, it is something that should, at the very least, be ruled out.

Open Original Shared Link

The above site is from Columbia University's Celiac Center, which is a highly respected Celiac treatment and research center. The other pages on this site are useful as well.

Check out the summaries on celiac.com about celiac and lymphoma: https://www.celiac.com/st_main.html?p_catid...-06107023505.23

From pubmed: (there are plenty more, go to www.pubmed.com and search for celiac and lymphoma)

Cir Esp. 2007 Jan;81(1):46-8. Links

[Primary small bowel lymphoma.][Article in Spanish]

Ramia JM, Sancho E, Lozano O, Santos JM, Garrido F.

Servicio de Cirugia General y Aparato Digestivo. Hospital Santa Barbara. Puertollano. Ciudad Real. Espana. jose_ramia@hotmail.com.

We present four patients with non-Hodgkin's lymphoma of the small bowel. Three of the patients were men. Two patients presented with acute abdomen due to tumoral perforation and the remaining 2 presented with abdominal pain and other effects of the mass. The tumors were located in the ileum (1 patient), jejunum (2 patients) and jejunoileum (1 patient). All patients underwent resection of the affected segment. Three patients had large B-cell lymphomas and the remaining patient had a T-cell lymphoma associated with celiac disease. Different combinations of chemotherapy were administered. Only the patient with T-cell lymphoma died due to disease progression. Clinical aspects and the therapeutic strategy used in these tumors are discussed.

Cancer Epidemiol Biomarkers Prev. 2006 Nov;15(11):2069-77. Links

Malignant lymphomas in autoimmunity and inflammation: a review of risks, risk factors, and lymphoma characteristics.Smedby KE, Baecklund E, Askling J.

Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, S-171 77 Stockholm, Sweden. karin.ekstrom@meb.ki.se

Certain autoimmune and chronic inflammatory conditions, such as Sjogren's syndrome and rheumatoid arthritis (RA), have consistently been associated with an increased risk of malignant lymphomas, but it is unclear whether elevated lymphoma risk is a phenomenon that accompanies inflammatory conditions in general. Likewise, it is debated whether the increased risk identified in association with some disorders pertains equally to all individuals or whether it varies among groups of patients with different phenotypic or treatment-related characteristics. It is similarly unclear to what extent the increased lymphoma occurrence is mediated through specific lymphoma subtypes. This update reviews the many findings on risks, risk levels, and lymphoma characteristics that have been presented recently in relation to a broad range of chronic inflammatory, including autoimmune, conditions. Recent results clearly indicate an association between severity of chronic inflammation and lymphoma risk in RA and Sjogren's syndrome. Thus, the average risk of lymphoma in RA may be composed of a markedly increased risk in those with most severe disease and little or no increase in those with mild or moderate disease. The roles of immunosuppressive therapy and EBV infection seem to be limited. Furthermore, RA, Sjogren's syndrome, systemic lupus erythematosus, and possibly celiac disease may share an association with risk of diffuse large B-cell lymphoma, in addition to well-established links of Sjogren's syndrome with risk of mucosa-associated lymphoid tissue lymphoma and of celiac disease with risk of small intestinal lymphoma. However, there is also obvious heterogeneity in risk and risk mediators among different inflammatory diseases.

Blood. 2007 Jan 15;109(2):412-21. Epub 2006 Sep 14. Links

Hematologic manifestations of celiac disease.Halfdanarson TR, Litzow MR, Murray JA.

Division of Hematology, Mayo Clinic College of Medicine, 200 First St, SW, Rochester MN 55905, USA. halfdanarson.thorvardur@mayo.edu

Celiac disease is a common systemic disorder that can have multiple hematologic manifestations. Patients with celiac disease may present to hematologists for evaluation of various hematologic problems prior to receiving a diagnosis of celiac disease. Anemia secondary to malabsorption of iron, folic acid, and/or vitamin B12 is a common complication of celiac disease and many patients have anemia at the time of diagnosis. Celiac disease may also be associated with thrombocytosis, thrombocytopenia, leukopenia, venous thromboembolism, hyposplenism, and IgA deficiency. Patients with celiac disease are at increased risk of being diagnosed with lymphoma, especially of the T-cell type. The risk is highest for enteropathy-type T-cell lymphoma (ETL) and B-cell lymphoma of the gut, but extraintestinal lymphomas can also be seen. ETL is an aggressive disease with poor prognosis, but strict adherence to a gluten-free diet may prevent its occurrence.

PMID: 16973955 [PubMed - in process]