My Celiac Birthday: The Guide

Today marks one year since my Celiac diagnosis.  My Celiac birthday, if you will.  I’ve thought a lot about all of the frustrations I encountered trying to navigate the medical system after my diagnosis.  One of the ways I want to celebrate my Celiac birthday is by writing a very practical, straight forward guide for newly diagnosed Celiacs.    
Average time span from onset of symptoms to diagnosis is 8-11 years for most Celiacs.  A lot of damage can occur during that time, but most doctors (even Celiac “specialists”) will not explain to a newly diagnosed patient what that damage might be or proactively evaluate the patient for these issues.  Here’s what I learned while I negotiated my first year and what I wish somebody would have told me.
If you are a brand “new” Celiac, DO THIS:
Step 1-  Do NOT listen to your doctors first piece of advice, especially if it sounds like this, “You have Celiac disease.  Don’t eat gluten.  I’ll see you in three months or so.”  Your doc might be acting like this is a “no big deal” diagnosis, but it is huge and you need to get busy advocating for yourself.  Take these four actions ASAP:  
-Immediately adopt a strict AutoimmuneProtocol diet.  A straight gluten free diet will not jumpstart your road to recovery.  Healing will happen much faster and your antibodies will drop rapidly with AIP.    
-Get copies of the blood tests and endoscopy results that lead your doc to this diagnosis.  Request your medical records.  Read them & reread them.
-Get a blood test, called the “Array 4:  Gluten-Associated Cross-Reactive Foodsand Foods Sensitivity,” done through a lab called Cyrex.  Knowing if there are other foods your body sees as gluten, and that you should avoid, can help you in calming your immune reaction down faster. 
-Schedule another blood test (to look at antibodies) for a month post diagnosis.  During that month learn everything you can about Celiac and how to read your blood test results.  Seriously . . . make it your job.  The goal is to know as much as your doctor does about Celiac (if not more) by the next appointment.
I definitely know more about Celiac than most of my doctors now.  This benefits me so much, because I know how to call them out on misinformation or how to recognize a gem.  It has also helped me not get accidently glutened by medicine the doc was recommending more than once.
Step 2-  If you adopted AIP like you were supposed to, you should start to feel better very soon.  Use that extra energy to schedule some additional check-ups.  You might be seriously deficient in many vitamins and minerals.  Get familiar with what ideal, not lab normal, ranges are in these vitamins and minerals, so that if you are deficient you will know what to shoot for in order to really, really feel better.  Also, learn what the symptoms of deficiency are, so you can speak with your doc about treating it quickly if necessary.  Go see your primary care doc to get the following evaluated*:
 
-B’s (especially B-9 & B-12)
-D (this one is a biggie, even for non-Celiacs)
-A
-K
-E
-Calcium
-Iron
Treating my B & D deficiencies was enormous in my recovery.  I felt so much better when they got into the ideal range.  *If explaining that you have been diagnosed with Celiac is not enough to get your doc on board with these evaluations, get a new doctor.  Totally not kidding.  In one year I’ve switched doctors six times.  I want the one that wants to be on my team.
Step 3-  Now that you are eating a better diet and have addressed vitamin/mineral deficits, you’ll have even more energy to move on to the next step.  There is a chance you have some other health issues that like to be buddies with Celiac.*  Learn about the symptoms of the following and the best methods for evaluating them, then get with your doc to take a look:
-Type 1 Diabetes (this should really be an automatic screening, but many docs don’t do it)
-Anemia
-Hashimoto’s Thyroiditis
-Osteoporosis
-Gall Bladder Insufficiency
-Pancreatic Insufficiency
-Dermatitis Herpetiformis (this is not Herpes, it is a skin disorder)
-Primary Biliary Cirrhosis (Autoimmune Liver Disease)
-Infertility
-Neurological problems (like migraine or neuropathy)
It took forever, but I finally got a doctor to help me address pancreatic issues and now I can digest food so much better.   *The opposite is also true, if you have one of these conditions, insist that you be evaluated for Celiac.
Step 4-   You are well on your way and probably several months post diagnosis by now.  You might still be struggling with some hard to identify or hard to treat issues that pop up a lot for Celiacs.  Get with your doc to find out if you are having trouble with the following:
-SIBO (a bacterial overgrowth in the small intestine that is really common for Celiacs)
-H. Pylori infection (might be causing you to have low stomach acid, which makes it tough to digest food well)
-Other bacterial, yeast, or parasite infections
I had a SIBO and a parasite infection.  Unfortunately, it was not until long after diagnosis that I finally found a doc to help me identify them.  Getting them treated made a huge improvement in my recovery.
Step 5-  Now that you’ve dealt with all that (as though it was not even hard work), here’s some extras to consider:
-Taking a probiotic to aid the gut.
-Whether or not you need to avoid specific kinds of carbs for a time in order to help your damaged gut heal (look into the Specific Carbohydrate Diet)
-Whether or not you need to avoid specific kinds of sugars for a time in order to help your damaged gut heal (look into FODMAPS & fructose malabsorption)
And finally, that OTHER thing . . . Celiac disease, particularly if your diagnosis was very delayed, can put you at greater risk for certain kinds of cancer, like intestinal lymphoma.  The risk level appears to be elevated for the first two years post diagnosis and then, if you follow a strict gluten-free diet (easy with AIP) the risk returns to normal.  I try not to dwell on this and don’t choose to talk about it much on the blog, but if you are a fellow Celiac, get educated about it.  You can learn more about here.   

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13 thoughts on “My Celiac Birthday: The Guide

  1. TF

    Great post! What did you do to uncover your pancreatic insufficiency? Are there any tests for it? I am not celiac (I haven't tested positive for the antibodies but I definitely am gluten intolerant, was D and B12 deficient and eat a paleo diet now.) but I suspect something is up with my pancreas. I don't know how to move forward with it. Thanks again!

    Reply
  2. TF, I had testing done through this lab: http://www.metametrix.com/ It showed that my pancreatic enzymes were very low. I talked to my doctor about some atrophy issues I was having w/ the fat layer under my skin, a pain I got in my back high up on the left side when I ate, & the test results. Together she & I decided that I needed to supplement w/ enzymes. It has not totally helped the fat distribution issues, but I don't get the pain & digestion is easier. There are other, more invasive, tests, but I think you will have alot of difficulty getting them ordered by your docs. Metametrix was not cheap, but it was worth it. Their site has info about how to find a doc to order the tests for you. Press your docs to help you. If you suspect it, it is worth pursuing.

    Reply
  3. TF

    I had that test too. That was what made me suspect- because my doc wasn't sure how to interpret the results, but you know how it shows a continuum on the results and mine were "low normal". I am having a hard time figuring out what enzymes to take.

    Reply
  4. I find this a bit overwhelming because I suspect that I have a number of these issues and have yet to find a doctor to really help me. Nonetheless, I appreciate you being straightforward and providing this information!

    Reply
  5. Janelle, thanks for reading! I'm sorry it made you feel overwhelmed. Don't let it get you down . . . just take a deep breath & then start w/ Step 1. Bit by bit you will uncover things & help your body recover. It took me a whole yr to do this & I am still fine tuning. Don't feel like it all has to happen overnight. (Actually, having this guide might hopefully make things more cut & dry for you.) ;-)

    Reply
  6. Anonymous

    I agree with TF and Janelle; I cried with despair when I read this post. I've been diagnosed with latent onset autoimmune diabetes--and I am celiac. I am also infertile. I just read your posts and realize that I probably have pancreatitis. Is there any good resource that you can recommend where I can read about the links among pancreatitis, diabetes, and celiac conditions? I'm having no luck putting the pieces together. Doctors don't seem to help. They assume my diabetes is type 2 (since it came on in adulthood) and won't do anything until it's bad enough to require insulin.

    Also, is the AIP diet enough to stop or even reverse the progress of pancreatitis and liver disease? I have been on the AIP diet for six months and seen no improvement in my symptoms (digestion problems, amenorrhea, serious skin problems). And I mean none. And I mean I am strict AIP.

    What kind of enzymes are you taking? I understand that you are reluctant to provide specifics, since you are not a medical doctor. But please understand that it's impossible to find information about this stuff. You are doing an incredible service by offering some suggestions for people to investigate.

    Thank you for writing this.

    Reply
  7. Dear Anonymous-
    I am so sorry this made you cry. I definitely did not want that reaction. There is hope, do not give in to despair. You are so, so many steps ahead already, 'cause you have a diagnosis & you know about AIP. I will try to put together some resources & get back to you soon. Take all that negative energy & turn it into the steam that moves you forward!

    Reply
  8. Anonymous-
    I recommend that you start by reading info here: http://www.cureceliacdisease.org/ The U. of Chicago Celiac Center has some great info, but read while keeping in mind all you know about AIP & alternative or complimentary medicine. Another good blog is: http://www.thepatientceliac.com/ She is a ped. doc. w/ Celiac herself & is doing a great job writing blogs talking about Celiac & it's associations w/ other autoimmunes. Simply google pancreatitis & celiac & diabetes . . . you will find a wealth of info. If you don't already know how to do it, I encourage to carefully learn how to evaluate good & bad resources on the web before you do all this reading (Purdue has a website called OWL that can help your learn to evaluate). AIP is a very powerful management tool, but I can not tell you that it will definitely stop or reverse your diseases. I can tell you that in my case, it quickly & dramatically brought down my gluten antibody numbers. You can read that story here: http://www.thepaleomom.com/2012/10/real-people-real-paleo-angela-alts-success-with-the-autoimmune-protocol.html I wrote that blog for The Paleo Mom. She is a tremendous Ph.D. resource on AIP & its benefits. As to whether or not you have seen any success following AIP, read here: http://www.alt-ternativeuniverse.blogspot.com/2013/02/measuring-success.html It will give you some ideas on how I evaluate my progress. It is possible you have other food allergies, so consider testing. Some of the foods still "in" on AIP could be an issue for you. Finally, I do remain reluctant to share what enzymes I take, but you could start by looking into enzymes available in your health food store or talking to your doctor about prescription enzymes. You can do this & your body will thank you!!

    Reply
  9. Anonymous

    Thank you for this information. I know of all the resources that you mention; I have read and followed the Paleo Mom's AIP protocol strictly for 6 months now and I read the other blogs. None of them, however, made the link to pancreatitis and liver disease. None of them talk about type 1 diabetes much, either. I feel that I don't have any resources that map out a game plan for dealing with type 1 diabetes, pancreatitis, and celiac. My diabetes is growing steadily worse, too.

    I have requested a test for pancreatitis and cirrhosis and I hope that will lead to some prescriptions for enzymes that may help my digestion. In the meantime, I am eating a very low carb strictly autoimmune diet with no fodmaps. This means that I don't eat much. I feel very alone. If you know of any others who are trying to manage latent onset autoimmune diabetes along with celiac, pancreatitis, and infertility, I would appreciate any links or tips. It's incredibly discouraging to be on this strict of a protocol and see no improvement.

    Reply
  10. Anonymous

    I wonder if you or one of your readers can help me. I am working with my doctor to take the Cyrex Array 4 that you recommended. This looks like it will be very helpful in testing for cross reactivity with various foods (potato, white rice, egg, milk, chocolate, yeast). I have a question, however. Do I have to eat these foods before the test in order to get accurate results? I know, for example, that I get negative results on celiac antibody tests now because I have not eaten wheat in so long. I want to make this Cyrex test accurate. Should I eat some potato, white rice, egg, milk, chocolate etc. before taking the test?

    I contacted Cyrex directly about this and they replied that they were not able to give out any medical information. My doctor knows nothing about the test. He is willing to order it (I pay) but that's all. I wonder if you can tell me your thoughts/experience about this question.

    Again, a million thanks for your help.

    Reply
    1. Hi Anonymous-
      You ask a really good question. When I had my Array 4 done, I was not yet eating AIP, so I really don't know if it is best to eat some of the foods tested prior to the test. I can tell you that some of the things tested, I had never eaten at all, but they were able to test anyway. Is your doctor willing to call the lab & see if he can get some info? I would start there. Good luck!!

      Reply
  11. Anonymous

    Thanks for your comment; that's a big help! I will feel much more in control after knowing these test results.

    Reply

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