Anyone Else ?

[Aquadan005]

Ok, so heres the scoop. I've always had a suspicion that something was wonky in my body. I've always been gassy, no matter what I ate, and I was always able to eat seconds and thirds (depending on the meal). Last year my 70+ year old mom was diagnosed with colon cancer (since removed and she is completely cancer free now). My last colonoscopy was in 2005 and her doctor suggested I get one, as well as all my brothers(we're all 50 and over) We all came back clean except yours truly. I am having a procedure next week to have a cancerous growth removed.

In addition to this finding, they found the Celiac and confirmed it with the blood test. My Gastro doctor also wants me to see my regular doc for a B-12 deficiency as well as a hemotologist for an iron deficiency.

Now on top of all this he wants me to meet with a nutritionist. Fortunately I have very good insurance through work so seeing all these specialists won't cost me more than a bunch of co-pays.

My question to you guys: anyone else here using a nutritionist or other professional to assist you with this transition? Everyday since I've been diagnosed I come across a sitiuation where I feel I need an educated and trained person to make the right choice or get the right answer. I don't want to go through any more trial and error than ABSOLUTELY necessary.

[kareng]

I'm not sure why you need a hematologist.  Once your Celiac starts to heal, you will start to absorb the vitamins.  IN fact, use a sublingual B12 and it bypasses the intestines.

[NoGlutenCooties]

I'm so sorry about the growth.  Hopefully they caught it early (good for you to get the colonoscopy!) and once you get your villi healed from the Celiac you'll be able to absorb nutrients again and be healthy as a horse.    As to your question about a nutritionist...  as I'm sure you know, Celiac causes villi damage which keeps you from absorbing nutrients out of your food which leads to all sorts of vitamin and mineral deficiencies which leads to all sorts of other health problems.  You should have your doctor run a complete panel of tests for vitamin/mineral deficiencies.  If you are not familiar with what foods are rich in which nutrients, where gluten may be hiding, etc. and are not inclined to do a ton of research on your own... then yes, a nutritionist may be right for you.

[bartfull]

Some folks here have benefitted from seeing a nutritionist, but a lot of us have gone that route and found that we know more about celiac than they do. For instance, the one I saw help me in that she suggested I go completely organic for a while because my system was in such an uproar it was even reacting to pesticide and artificial fertilizer residue. That really helped.

 

BUT, she also suggested I go vegan, which would have limited me so much more with my diet, and she gave me a supplement to try that contained wheat grass. When I pointed that out, she said, "Well, it's just the grass, not the grain". She didn't realize that even ONE grain from some grass that had sprouted, or the residue from the equipment it was harvested on or stored in, could be a big problem. (Of course I didn't take the supplement.)

 

I think you will get better information on what to eat and what not to eat just by reading as many threads here as you can. Start with the "nebie 101" thread in the coping section. Then check out the breakfast/lunch/dinner threads.

 

And ask as many questions as come to mind. We're glad to help.

[pricklypear1971]

I'm not sure about the hematologist UNLESS your doc suspects a blood disorder. My son has thalassemia trait and his bloodwork is a MESS. He looks anemic but since the thal messes up his blood cell shape, etc. it is almost impossible to figure out if he needs iron or not.

We do need to see a hematologist because most docs can't figure it out AND if you give a Thalessemia patient iron (who doesn't need it), it will damage the liver.

You can run a Thalessemia panel - they dx it via looking at 5 or so tests and making a judgement...in my sons case it was easy. His cell shapes are off a bit everywhere.

[C-Girl]

I was referred to a nutritionist who was very informed about celiac and she was absolutely, positively instrumental in helping me to overcome my symptoms. I cannot recommend more highly that you pursue finding one who will work with you, especially if you have nutritional deficiencies! If your insurance covers it, you'd be selling yourself really short to at least not give it a shot. But be ready to keep a diligent diary of everything you eat. It hasn't been much of a problem for me - i just keep it near where I eat (which is unfortunately on the sofa in front of the TV )

[cyclinglady]

I'm not sure about the hematologist UNLESS your doc suspects a blood disorder. My son has thalassemia trait and his bloodwork is a MESS. He looks anemic but since the thal messes up his blood cell shape, etc. it is almost impossible to figure out if he needs iron or not.

We do need to see a hematologist because most docs can't figure it out AND if you give a Thalessemia patient iron (who doesn't need it), it will damage the liver.

You can run a Thalessemia panel - they dx it via looking at 5 or so tests and making a judgement...in my sons case it was easy. His cell shapes are off a bit everywhere.

Yep, that is why I was anemic for so long. They just thought it was my thalassemia issues. Besides having tiny little red blood cells and always being just below range for hemoglobin, my doc ran a DNA test to confirm the thalassemia. My body has always compensated for this trait, but when the celiac disease triggered, month long periods hit, I could barely breathe! I had been taking iron but only until my ferritin level stabilized. I am good now. Nice to know about this trait for future grand kids!

[pricklypear1971]

Yep, that is why I was anemic for so long. They just thought it was my thalassemia issues. Besides having tiny little red blood cells and always being just below range for hemoglobin, my doc ran a DNA test to confirm the thalassemia. My body has always compensated for this trait, but when the celiac disease triggered, month long periods hit, I could barely breathe! I had been taking iron but only until my ferritin level stabilized. I am good now. Nice to know about this trait for future grand kids!

Yep. Neither my husband nor I exhibit the trait but obviously we carry it because he has it. My MIL, her brother and a cousin exhibit the trait. I'm sure others do, too, but those are the ones we know of.

He's perfectly healthy but his CBC panel is alarming.

[cristiana]

In the UK, or at least certainly in the area where I live, first you have the blood test for celiac on the National Health Service, if that is positive, then you have an endoscopy and then if that is positive you are referred to a nutritionalist.  It is standard procedure.   I think it was helpful because it was the nutritionalist who first stressed to me the importance of not even having a crumb of gluten, and not to share a toaster or a crumby butter knife with my family.  I thought he was taking things a bit too far ... but of course he was absolutely right!  I then had continuing symptoms and he told me to try giving up dairy for a while and again, that was v. helpful.  Now my villi are healing I am slowly reintroducing it.  But I wouldn't want to be without this website, my own recovery has been complicated and there are so many helpful people here to answer all sorts of questions.

[anti-soprano]

Welcome Aquadan!  You are lucky to have caught both the celiac and the colon polyp early.  Many of us are ragged by the time we get the diagnosis.  So instead of seeing this as a horrible thing, I think you should see it as a blessing.  You will heal much faster and not have to go through the slow deterioration of your poor body before getting a diagnosis. 

 

I saw a nutritionist at the beginning.  She was a little it helpful to me in suggesting products and probiotics.  You should do it.  Maybe you'll get someone really great who makes some key suggestions for you.

 

As far as the lack of information goes at the beginning, I was always on the computer looking up products/foods.  All you need to do is google "is kraft italian dressing gluten free" and answers from several places (sometimes this forum) will just pop right up!  Sometimes the info is a bit more difficult to find, but you can always call the company.  In the beginning, I also used my smart phone quite a bit while out or at the grocery store.  There's a great app called "Find Me Gluten Free" that will give you gluten free restaurant options by your location.  They also have menus you can pull up in a lot of cases.  You can access that online as well.  

 

Best of luck to you and a speedy recovery!

Shellie

[notme]

it was gonna be 2-3 weeks by the time i could get an appointment to see a nutritionist/dietitian!  what was i supposed to eat until then!!??  lolz - by the time my appointment rolled around, i was already on this forum and feeding myself pretty well.  i cancelled it and never did go.  unless you get a good one, they can do more harm than help if they don't understand the disease.   many of them seem to think you need to eat vegetarian/vegan, which is not true.  (and one of my docs refers his gluten free patients to 'here' for dietary advice lolz)  plus, they can tell you to eat this or that, but we can tell you how to fix it so it TASTES good    read the newbie 101 thread in the coping section and there are many dinner/meal suggestions in the cooking/baking section.  if you have any questions, there are people on here who can help you.  food journal is a great idea, too, while you are starting out.  welcome to the forum 

[Aquadan005]

Thanks for the replies and advice. Like I said the less trial and error the better.

[NoGlutenCooties]

  (and one of my docs refers his gluten free patients to 'here' for dietary advice lolz) 

 

My GI doctor never even asked me if I knew what gluten was - she just said go gluten-free, retest your blood in 6 months, and go to celiac.com if you have any questions - and all of your symptoms should go away.  (I had to remind her that I didn't have any symptoms in the first place.)

[Aquadan005]

So I had the follow up with the Hematologist/Oncologist today. First order of business? 6 tubes of blood. 15 minutes later I met with the doc. Blood test shows an iron deficiency, however not too severe. Doc figures a couple of intravenous treatments should take care of it, then a check every 6 months or so. On the other hand though, a low white blood cell count.  So my blood goes out for more intensive screening, and I should hear something in about a week. Meanwhile tomorrow, back to the surgical center for another up close encounter with the colonoscope  to try and remove the growth. UGH!!!

[scdurs]

I saw a nutritionist after diagnosis, and she had a lot of great tips and pointers about finding gluten free products. Don't worry, she shouldn't write a diet for you unless that is what you want.

[GFinDC]

Have fun at the butt doctor Dan!   Hopefully it will be a simple procedure and over quickly.

 

Nutritionists are a mixed bag when it comes to celiac.  Sometimes the know useful info and sometimes they don't.  If you can find a local celiac disease support group and ask them for suggestions on a good nutritionist it might help.  In the DC area Cheryl Harris is well known.

 

Unfortunately going gluten-free does seem to involve a lot of trial and error.  That's why sticking to a simple whole foods diet is helpful.  At least to start out.