So I am getting tested for celiac disease. I've known I had issues with gluten for years, and my grandma had it, but it never got that bad.
Now I've had diarrhea for months and am losing weight - so it seems sensible to get it checked out.
But I'm on V & O, completed the O infusions in July (about a month before diarrhoea started). Would that compromise the test? In fact is it even possible to be celiac having been on anti-CD20 medication?
Celiac disease is caused by gluten so if it is caused by gluten it can contribute to diarrhea during a therapy.
Losing weight and frequent diarrhea is a sign that your colon may need a check up. Especially if you notice black or very dark brown stool color. When did you last have an occult blood test on a stool sample? If not recently, do one. A home test is around 3 euros and either gives peace of mind or tells you to head straight to your doctor and have a thorough check up.
Thanks Leo - no other worrying stool symptoms and I did a FIT test, which I assume is clear as they haven't contacted me (will check though!)
Hello Greenbunnies, I was diagnosed with coeliac disease a couple of years before treatment with O+V. I lost a lot of weight due to being coeliac, the surface of the small intestine is destroyed resulting in poor absorption of nutrients, irritation and so diarrhoea speeding passage up and even less absorption. I actually put weight on when on O+V (I’d lost a lot again due a massive spleen) and it didn’t bother my coeliac disease at all. I don’t know if it would affect the blood test result however. An endoscopy would be a definitive test. Best wishes x
Ah that's interesting... I had diarrhea and weight loss last year in the run up to my CLL diagnosis and, like you, put weight on after starting on O&V.
I had lots of coeliac blood tests in the three years before my CLL was diagnosed. I did have full blown CLL at the time but wasn’t diagnosed. They were negative.
I had chronic diarrhoea and pain after food. I was under a pancreatic dr all that time, having had pancreatitis about 8 years ago. They assumed it was all post pancreatic insufficiency and inflammation.
I eventually panicked, as there was a family history of bowel cancer, and I felt so so tired. No one had done a colonoscopy, and yet I was anaemic, with fatigue and diarrhoea.
The colorectal surgeons were wonderful and said my bloods were really abnormal and that they were worried I had a diverticular abscess or lymphoproliferative disorder. The scan they did showed I had a large spleen and CLL was diagnosed a week later.
I decided to stop gluten when diagnosed with CLL as I was worried because of a very strong family history, including brother. He encouraged me to try 6 weeks without gluten, and at exactly 6 weeks, my life changed. No diarrhoea, no abdominal pain.
I wouldn’t recommend doing what I did as it’s useful to have a gastroscopy done to confirm diagnosis, and it doesn’t work unless you are on gluten. However you could try stopping gluten while on V&O and see if your symptoms improve maybe, and then reintroduce it after your V&O.
You sound as if you need a colonoscopy first. Chronic diarrhoea should always be investigated. Mine just happened to be coeliac.
Because I get severe diarrhoea within the hour of a little gluten contamination, my pancreatic dr said to assume it was coeliac.
The coeliac blood test does not work if you have low immunoglobulin a. They would do a gastroscopy. I imagine venetoclax would contribute to a low IGA when on it.
However it is also known that s lot of people have abnormal IgA when first diagnosed with CLL, even though the levels might not be that low. I feel that in my case that’s probably why the ordinary blood test didn’t work.
Good luck. I would suggest a good gastroenterologist of colorectal surgeon who works with your oncology team. Good luck!
So helpful, thank you!!! Yes, it is the IgA I'm wondering about and how that's affected by O&V.
I already know that stopping gluten helps my symptoms as I did it a few weeks ago with magical results. I'm eating gluten now (which makes me feel really really lousy) to make sure the test is accurate - going on your experience, if the test comes back negative I will ask for a referral anyway.
I read there is an association between celiac and non-hogkins lymphoma - if true that could certainly explain some of what I've experienced in the last couple of years! Glad you've got yours under control now.
The reply from Pearlpink is excellent, and I endorse it completely.
I have not had the coeliac test because it would involve eating gluten for a few weeks, I anticipate how ill it would make me feel, and at this stage I don't need to know.
So I just continue what I've done for the past 25 years and avoid foods containing gluten. If you do the same, and it makes you feel well and digesting normally again after a week or two, you can be fairly sure that you have a gluten intolerance and should avoid it henceforth - it's not that difficult to maintain really - and then it's not vitally important to know whether or not you have coeliac disease.
If after giving up gluten for a couple of weeks you still have digestive issues, you definitely need to be referred to a GI/ colorectal specialist and probably have a colonoscopy. The NHS hates doing them unnecessarily and you may have to wait, so tactically it is best to go to your GP with current symptoms, get your referral, then start your gluten withdrawal. If the latter course of action works you can always pull out of the former.
Edit: Your GP can also order a FIT test on a faecal sample. This is the same test as used in the 2-yearly screening programme, but is much better in that the concentration of haemoglobin is reported.
Good luck.
Pearlpink -
> The coeliac blood test does not work if you have low immunoglobulin a.
A negative on the coeliac antibody test could be a false negative. But a positive would likely be a true positive. So it's worth it to try, I think.
=seymour=
I've recently had tests (gastrectomy and colonoscopy) for celiac disease but don't know the results yet. I don't have severe symptoms but it will be interesting to learn the results. My haematologist picked up my raised liver enzymes and low iron levels and asked my GP to refer me for further various tests. You'll need to continue eating gluten for any test to show an intolerance of course but it sounds like you may benefit from those tests. Don't assume it is celiac until you know results though.
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