So Grateful For Years Of Painful Symptoms - Really!

[gf-soph]

I just got back from a follow-up appointment with my gastroenterologist, who conducted an endoscopy and colonoscopy a month ago to check for Crohn

[conniebky]

I think that's wonderful.

[Looking for answers]

Hi,

I'm so happy to hear this news for you. It's great that you're so proactive about your health at such a young age, and it definitely has paid off.

Years ago I read a book by Jordon Rubin. He's the maker of the Garden of Life supplement line. I can't remember how I stumbled across his book (If I remember right, it was called The Maker's Diet). Anyways, he had Chrohn's disease and cured it through his diet - gluten free and dairy free, etc. I don't know why but when I read your posting I thought of it...you might want to skim through it to see if it may help you with your ongoing issues.

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I can tell you that probiotics and enzymes have helped me greatly. I take them with every meal. I highly recommend them if you're not already taking them.

Good luck to you. Whatever you do now while you're young is sure to ward off future issues.

[bluebonnet]

that's awesome!!!! even though you still have issues, you must feel gratitude, relief and peace of mind now for sure! my gi doc said to try the probiotic brand "align". its realllllly pricey though ... $28 for 1 pack, so basically 1 buck per pill! but probiotics do help, so maybe they can offer your "ibs" a little relief.

[wrench]

Oh great, now I'm scared that I'll have bowel cancer at 25!

Only sort of kidding. Good that they got it so early.

[gf-soph]

thanks for the suggestions - I will look in to it. The pain is that the testing hasn't given me a direction for future diet, this is the result of a process that started in October last year when I started an elimination diet and got worse!

I have been back to see my dietician and we are trying a low chemical diet (low in amines, salicylates and glutamate) to see if that helps the nasty brain fog - I can deal with almost everything except the damn fog! My irritation about another round of (possibly useless) diet restrictions is pretty strong at the moment, but the recent events has helped me get some perspective!

[anabananakins]

Wow, I am SO glad you have been pursuing all these tests! That is fantastic that they caught it now (ok, better not to have found anything at all but given the all too likely other possibility, a huge relief!)

It's making me think maybe I should ask for a check up. My dad gets checked for polyps because his mother had them but I wasn't too worried because I'm only 33 (and it wasn't a procedure I was rushing to have). But if they found them in a 25 year old...

Sharing stories like this is really useful - I think it makes people more proactive. A colleague was diagnosed with breast cancer a few years ago, they caught it really early and she's doing fine. And she said what she went through was worth it if it meant even just one person she knew started checking more carefully because of it.

[Gemini]

Wow, I am SO glad you have been pursuing all these tests! That is fantastic that they caught it now (ok, better not to have found anything at all but given the all too likely other possibility, a huge relief!)

It's making me think maybe I should ask for a check up. My dad gets checked for polyps because his mother had them but I wasn't too worried because I'm only 33 (and it wasn't a procedure I was rushing to have). But if they found them in a 25 year old...

Sharing stories like this is really useful - I think it makes people more proactive. A colleague was diagnosed with breast cancer a few years ago, they caught it really early and she's doing fine. And she said what she went through was worth it if it meant even just one person she knew started checking more carefully because of it.

While I am the last person who would intentionally try to scare anyone on a health related issue,

anyone who develops a polyp which is pre-cancerous at such a young age ought to be gene tested for one of the colon cancer genes. It is very common to see polyps and pre-cancerous lesions in someone who carries the gene and not for someone who doesn't. The vast majority of colon cancer happens in older people....past 60 years old and even older. When you see these problems in anyone under 60, it could mean you have a genetic pre-disposition to them. If your parents or family members are prone to polyps, then those are the people who should be tested and screened.

For the general population, with no family history of cancer/polyps, screenings should be an option, unless you want to be screened. Doctors don't pay enough attention to genetics and

sometimes push screenings that are unnecessary at younger ages.

Celiac Disease does not put you at higher risk for colon cancer....unless you aren't diagnosed and keep on eating gluten and being sick. I don't think there has been a direct link studied but I shudder to think what my colon would be like if I hadn't been diagnosed!

[anabananakins]

It is very common to see polyps and pre-cancerous lesions in someone who carries the gene and not for someone who doesn't. The vast majority of colon cancer happens in older people....past 60 years old and even older. When you see these problems in anyone under 60, it could mean you have a genetic pre-disposition to them. If your parents or family members are prone to polyps, then those are the people who should be tested and screened.

That's interesting, thank you. I confess to being pretty 'head in the sand' about it. I will tell my GP my family history and ask about the gene.

I'm not diagnosed celiac but when the tests came back negative I went gluten free because I knew it made me feel bad - and I feel so much better.

[gf-soph]

My dad and his sister are already over 50, so both have had colonoscopies that came up clear. I spoke to my GP and she did confirm that my sister (26) needs a colonoscopy now as she has a higher risk of these polyps, and we have also informed my cousins as they may have a higher risk too.

From what I know, there are 2 main conditions where someone my age would get these polyps. One causes hundreds of polyps, so clearly not my issue. The other is characterised by several first or second degree relatives with bowel cancer or early polyps. I have a very small family, especially on my dad's side, so it may be if there were more family members that pattern would show up, but who knows. If you have a big family pattern, I would speak to your GP about it.

I'm glad that I have a GP that I trust, so I'm sure if there was something I should know she will tell me. She doesn't totally pander to me, but she is prepared to take my concerns seriously. I will admit I am a bit concerned that whatever caused that polyp may not just be an isolated problem, as they found an unidentified dark spot in my liver about 6 months ago (could be nothing, might not be). I will be getting a repeat ultrasound to make sure it hasn't grown. I don't expect it to be a problem, but I will be happy to have it confirmed that it's the same size! The challenge will be not turning into a hypochondriac now!

[Gemini]

My dad and his sister are already over 50, so both have had colonoscopies that came up clear. I spoke to my GP and she did confirm that my sister (26) needs a colonoscopy now as she has a higher risk of these polyps, and we have also informed my cousins as they may have a higher risk too.

From what I know, there are 2 main conditions where someone my age would get these polyps. One causes hundreds of polyps, so clearly not my issue. The other is characterised by several first or second degree relatives with bowel cancer or early polyps. I have a very small family, especially on my dad's side, so it may be if there were more family members that pattern would show up, but who knows. If you have a big family pattern, I would speak to your GP about it.

Many Celiacs have liver related issues before they are diagnosed and I would bet that yours will go away if you follow the diet strictly. I had elevated liver enzymes but no longer, since I started the diet. I would bet there is a connection for you.

I'm glad that I have a GP that I trust, so I'm sure if there was something I should know she will tell me. She doesn't totally pander to me, but she is prepared to take my concerns seriously. I will admit I am a bit concerned that whatever caused that polyp may not just be an isolated problem, as they found an unidentified dark spot in my liver about 6 months ago (could be nothing, might not be). I will be getting a repeat ultrasound to make sure it hasn't grown. I don't expect it to be a problem, but I will be happy to have it confirmed that it's the same size! The challenge will be not turning into a hypochondriac now!

Many Celiacs have liver related issues before they are diagnosed and I would bet that yours will go away if you follow the diet strictly. I had elevated liver enzymes but no longer, since I started the diet. I would bet there is a connection for you.

I would ask about being screened for the gene for colon cancer. That will give you a lot of information with regards to screening. Polyps in anyone under 60 and in family members at a younger age is not common. I know in the US the doctor would screen for that if a patient expressed interest in knowing. It's good information to have. I am glad that everything worked out so well for you and if you stay gluten-free, things will improve and then maybe you won't have these worries.

[katyd1d]

Congratulations on such a fortuitous discovery! It's maybe a strange thing to celebrate, but valuable just the same.

I am constantly looking for silver linings (how nice it will be to have a diagnosis if I have Celiac, and how much healthier I will eat, if I turn out to really have it, which might get me into the healthier lifestyle I've been meaning to follow). But your silver lining (no diagnosis, but here, get rescued from the deadly threat you didn't know about) is super shiny!