Diagnosed. Now What?

[JosieToo]

Hi all,

 

I’ve just been diagnosed with Celiac Disease and I want to make sure I’m doing everything that I should be doing to manage my health. Here’s a list of what I’ve come up with so far. Is there anything else that I’m overlooking? I’m already on a gluten-free diet.

 

Next steps:

• Immediately:
  • Schedule appointment with dietician specializing in Celiac Disease
  • Schedule appointment with GI specializing in Celiac Disease
  • Schedule appointment with OBGYN to discuss pregnancy/fertility issues associated with Celiac Disease
  • Schedule blood tests for nutritional deficiencies (and to determine a baseline for future testing)
  • Contact pharmacist to determine if current medication (Nexium) is gluten-free

 

• Depending on results of blood tests for nutritional deficiencies and discussion with OBGYN, source any gluten-free vitamins that may be required

 

• One year after diagnosis (August 2014):
  • schedule bone density test to determine if calcium or vitamin D supplements are necessary
  • schedule an endoscopy to determine level of healing
  • schedule follow up blood tests to monitor nutritional deficiencies (including iron, folic acid/B12, vitamin D)
  • schedule blood tests for general health (including CBC, thyroid, lipid levels – cholesterol, HDL, LDL, triglycerides)*

*I just had a bunch of general blood tests done (CBC, thyroid, lipid levels, etc.) so I presume I don’t need to that again until at least a year has passed on the gluten-free diet.

 

Thanks in advance for your feedback.

[StephanieL]

So you are obviously a planner

You say you were diagnosed already, how?  Who did the biopsy?  What blood work was done?  

If you already saw a GI Dr., why would you need to see another? There aren't a ton of Celiac specialists so you may be hard pressed to find one in your area.  I don't see what the need would be esp. if you are already gluten-free. They aren't going to tell you anything different if you do indeed have Celiac.  Are you currently trying to get pregnant? If not, then I wouldn't think that needs to be n immediate appointment. You should already have blood tests for a baseline if you say you have been diagnosed.

[w8in4dave]

So blood test must of tested positive? Well you are on your way to being healthier !! Good for you!! I wish I would have made a list like that!! I still want to see a nutritionist. I think that is a great idea!! Great plan and stay positive!! 

[JosieToo]

Hey guys,

 

Yes, I'm a planner.

 

1) The GI I saw (who did the biopsy) said that she was not an expert on Celiac. I'd like to see someone since I have about 50 questions already that I'd like answered. I'm in Toronto, Ontario - so hopefully there is someone here that I can see.

2) Yes, we had been trying to get pregnant but this is on hold now until I have further information about any implications of this diagnosis on my ability to take a pregnancy to term, if I need to hold off until my stomach is healed, what vitamins I should be taking, etc.

3) I didn't think they tested for nutritional deficiencies with the general blood test for celiac. Are they the same thing, Stephanie?

[StephanieL]

I don't know much about the healthcare system in Canada but my understanding is that appointments can be hard to come by. I would prioritize what you really are most concerned about and work from there. If TTC is the highest priority, I would start there. 

 

Usually people go gluten-free and if they are still having issues later, they seek out more testing.  You have a confirmed dx and are gluten-free. Are you feeling better?  What kinds of questions do you still have?  I'm a researcher at heart so when my son was dx, I delved right into the reading and was pretty comfortable with the information out there. Places like this helped me fill the gaps. We don't see a "Celiac" specialist as there aren't any within a few hours of here but really, it's a pretty easy disease to manage so I wasn't concerned with needing more at this point.

 

Good luck in your search for answers!!

[nvsmom]

• Immediately:
  • Schedule appointment with dietician specializing in Celiac Disease
  • Schedule appointment with GI specializing in Celiac Disease
  • Schedule appointment with OBGYN to discuss pregnancy/fertility issues associated with Celiac Disease
  • Schedule blood tests for nutritional deficiencies (and to determine a baseline for future testing)
  • Contact pharmacist to determine if current medication (Nexium) is gluten-free

 

• Depending on results of blood tests for nutritional deficiencies and discussion with OBGYN, source any gluten-free vitamins that may be required

 

• One year after diagnosis (August 2014):
  • schedule bone density test to determine if calcium or vitamin D supplements are necessary
  • schedule an endoscopy to determine level of healing
  • schedule follow up blood tests to monitor nutritional deficiencies (including iron, folic acid/B12, vitamin D)
  • schedule blood tests for general health (including CBC, thyroid, lipid levels – cholesterol, HDL, LDL, triglycerides)*

*I just had a bunch of general blood tests done (CBC, thyroid, lipid levels, etc.) so I presume I don’t need to that again until at least a year has passed on the gluten-free diet.

 

Thanks in advance for your feedback.

 

Wow. Great plan. 

 

I would say for the immediate plan, the nutritional tests and ensuring your meds are gluten-free are the most important. The most common low nutrients/vits are calcium, magnesium, potassium, B's (12,2,6), D, iron, ferritin, copper, zinc, and A. To be honest, dieticians are often not found to be helpful if you are the type who will do some reading and research on celiac disease and the gluten-free diet, and you strike me as the type of person who educates themselves.  Concerning the OBGYN, unless you are already having difficulties conceiving, I don't know if you would need one yet. While celiac disease can affect a woman's ability to carry a baby to term, it doesn't in the majority of women - just in an extremely unlucky few. If you suspect you are one of the minority, I hope the OBGYN can help, but you may have to do some research to find one who knows anything about celiac disease..

 

For the one year plan, I think it is a good idea to recheck the nutrients and thyroid (TSH, free T4 and FT3 should be checked fairly often as thyroiditis is common in celiacs). It might be a good idea to recheck your low nutrients at the 6 month mark because some people (like me) don't have what they can absorb change in the first year, and you may need to be given vitamin shots to get yourself to a healthy level; it's best not to leave it for a year.

 

I doubt you will need a repeat endoscopy unless you are still having problems. A routine check isn't really helpful. Blood tests can be repeated - the DGP tests are the best for checking but the other tests will give you a clue as your healing too.

 

The bone density check probably isn't needed either but if they are willing to check it, you might as well.

 

Good plan!  Best wishes with it.

[1desperateladysaved]

I think the types of things you are planning are great.  Learning about the diet would be first on my list.  Don't forget to read every label on packaged goods.

 

I had untreated celiac disease for 30+ years.  I love children; I had five children in about 12 years, but then I had 16 years of infertility.  I had severe trouble with nausea and vomiting in pregnancy.  Now, my functional medicine nurse told me that a magnesium deficiency will cause this.  I do agree that testing nutrient levels could be very helpful in recovery and incase of a pregnancy.

 

I would suggest to begin taking a natural and high quality multi-vitamin, vitamin B complex, and pro-biotics.  These would be a little help for your body to get enough nutrients until you are tested to see what exactly you need.  If your villi were damaged heavily you may want to supplement with digestive enzymes.  My health practitioner informed me that celiac damages the villi that absorb nutrients.  These villi also tell the pancreas when to fire.  When the villi are damaged they cannot do this job.  The digestive enzymes help your body break down the food until the villi heal enough to do their job again.  That is the good news; the damage is reversible.  I do not know if you should take these in early pregnancy, so you may have to ask someone about that or read the label. 

 

Get well and best wishes,

D

[Celtic Queen]

 

To be honest, dieticians are often not found to be helpful if you are the type who will do some reading and research on celiac disease and the gluten-free diet, and you strike me as the type of person who educates themselves.

Have to agree with this.  I spoke to a nutritionist over the phone when I was first diagnosed and I knew more about what I could and couldn't eat than she did.  She just referred me to a bunch of web sites. 

 

There are a ton of great gluten-free blogs out there with recipes and survival tips.  If you have a question about whether something is gluten free or not, you can search this board or google it or go to the manufacturer's web site.  Also check out the library and see if they have any Celiac books you can borrow.  The first thing I did after going gluten-free was to read everything I could get my hands on about the disease.

 

I would second having your vitamin levels tested.  When I first went gluten-free, I was anemic, Vitamin D deficient, Calcium deficient and my good cholesterol was too low.  After two years gluten free, I've managed to improve my iron and calcium levels.  Still working on the rest.  Lots of folks on this board are vitamin deficient due to the damage of the Celiac disease.

 

It sounds like you have a good attitude about the whole thing and will be proactive managing your diet, which will help you a lot as you heal.

[w8in4dave]

Library is a very good resource!! Nice Celiac Queen!! 

[Celtic Queen]

Thanks.  I love books but can't afford to buy them all the time, so I make good use of our local library, especially now that I can download e-books and audio books.

[w8in4dave]

Yes Downloading books or borrowing from the library is a great idea!!