Newly Diagnosed Celiac / Suspected Celiac Cases
A guide for healing, and understanding
Written by Sarah Ryan, RN/Celiac/Activist & Mother
Congratulations! You may be thinking, “Excuse me?” But, I mean what I say with heartfelt emotion — congratulations. I hope you ARE intolerant of gluten proteins because if you are, this guide and a little time are going to change your life in an immensely positive way.
I’ve read various places that there are over 300 recognized symptoms of Celiac disease. We also know there is at minimum a 30% false negative on blood tests. Everyone I personally know with Celiac (with the exception of my son) was self-diagnosed. I mention this early on because regardless of your professional diagnosis, or independent “hunch” this guide is for you.
After 6 years of being self-diagnosed, the New England Journal of Medicine just published a peer-reviewed article detailing how Celiac can cause heart arrhythmia. I suffered from and was treated for this for a decade, but I have yet to convince a doctor that I am in fact a Celiac. When I removed gluten, I was also able to remove all my cardiac medications and my overall health improved dramatically. My point is, keep reading as this guide is meant for all, without judgment, or formality required.
I must also emphasize that a positive test means you have – without a doubt – Celiac disease, and accepting this is critical. I would also assume you to be on the higher end of the spectrum with regards to severity. This is a spectrum disease, meaning some will only experience a mild stomachache while others like myself have a life-threatening heart arrhythmia upon exposure. Be open to your particular case, and set of symptoms as Celiac is not understood fully and the breath of symptoms is impressive.
Either way, if you have already confirmed your diagnosis through the traditional means of a blood assay test and an M.D., or you are on a trial diet I would like to suggest a path towards wellness. Should you be on the trial diet, please give yourself eight weeks to heal. If your symptoms improve after this 8 week period of strict gluten-free living, you can be as sure as one who had a positive blood test that you too, can join the Celiac club — Membership cards forthcoming.
I must add the standard disclaimer to this document at this juncture. I am not a doctor. I am however a Registered Nurse. But I feel my greatest qualification to offer these words to the public, is my experience as a Celiac myself, and also as the mother of one severely affected little boy, and a daughter to a Celiac father as well. You may take what pieces of this guide that serve you well, and disregard that which you deem inaccurate. I just wish you all great health and happiness.
There are two basic tests in the United States that can be ordered. One, is a genetic test, and the other a simple blood assay test. You are far more likely to be given the blood test.
The blood assay test should consist of the following:
- Total IgA
If you stop eating gluten the blood test will be inaccurate. I made that mistake myself. However, as mentioned previously there is a high false-negative associated with the blood test anyway.
“Celiac … affects 1/100 people worldwide. However, most people with celiac disease (~90%) are unaware, undiagnosed or misdiagnosed. Most adults finally diagnosed with celiac disease have suffered at least 10-11 years and have seen more than 3 or more doctors.”
False negatives are estimated (from a typical blood panel) to hover between 20-30% (according to the NIH – a conservative governing body) . There is also a known population of celiacs who will never test positive in a typical blood assay and some of those affected are severe cases.
What about the genetic test?
There is a very scientific and interesting article published at Celiac.com</>
Basically, in summation, you can’t rely on a genetic test either, if its negative. However, positive tests in both blood and genetic tests are reliable (it seems to me).
What does that mean? It means frustration for many. Its also means you may know something is terribly wrong, but traditional medicine can fail to easily identify this particular problem. That said, a diet change is a simple self-test that you may employ and is reliable generally with 100% accuracy based on your improvement in symptoms – or not.
Endoscope and Colonoscopy
I have really strong feelings about these procedures. And because I’m not a doctor, I can be free with my opinions here. If a blood or genetic test can be wrong, so can the human eye and the brain of opinion. Sedation is required to perform these exams. There are other reasons to perform them, to identify gastrointestinal disease of many forms. However, to utilize either Endoscope or Colonoscopy under sedation ONLY to identify Celiac disease seems an unnecessary expense and risk. Just try the elimination diet and save yourself the trauma.
Accepting Your New Diet
I recall a period of being wildly frustrated after I went gluten free. I was unsure of everything I was eating. I was constantly experiencing accidental exposures, which was disheartening to say the least. I was also in a state of mourning over bagels. Yes, bagels.
This is a major life change, and the people around you may or may not really understand what you’re going through. Accept whatever feelings you may have and just know that countless other people have experienced this arch before you. Perhaps you can find someone who is also affected to talk to as you go through the phases of acceptance. But, man, its ok to be a little pissed off for a bit. I suggest having a good yell of “Why Me?!” from somewhere high up.
I also suggest that after the mandatory frustration period, you get excited. Once you wrap your head around the fact that everything you ever eat again has been affected, you should then focus on the fact that your entire life is going to improve and hang on to that notion with two white-knuckled hands.
Here’s the thing. You can (and will) find replacements to everything (except croissants… don’t even try) you ate as a gluten-eater. And then, the best part – you’ll begin to feel well. Maybe you will even be thankful that you’ll never eat another croissant again… well, lets not go that far, but thankful, yes for an improved future and longevity of life.
Your energy will increase, those dark circles will disappear, and perhaps whatever other strange and reaching set of symptoms you have will begin to slip away over time.
One note about anxiety: I have experienced, and been told of many severe celiacs suffering form a period of insomnia and intense anxiety in the first few months off of gluten. Talk to your general doctor about this if it occurs. Its treatable, and won’t last. The reasons for its occurrence are probably elements of this life-change, but also malnutrition.
Healing – Step One
Before you can make any conclusions about a gluten-free diet you must heal the literal holes that have permeated your gut. There are lots of techniques out there for doing so. I suggest you Google as many sources as you can about the subject but I have a brief list of steps that has worked the most effectively for me.
Each body is different, but we all have to seal that gut. Chicken broth seems to be the most effective way to do that. I began the GAPS diet (http://www.gapsdiet.com/) after a series of accidently exposures some years after my own Celiac diagnosis. I was struck with how helpful this diet was towards healing during these ‘outbreaks’. It would cut my down time in half.
Its since been suggested for initial healing, and I couldn’t recommend it enough. My only complaint is the lack of carbs. I have found, and perhaps its just my physiology, that if I don’t get enough carbohydrates I get depressed.
I would add the odd slice of Udi’s bread (http://udisglutenfree.com/). I think Udi’s has the best variety and the most delicious baked goods out there, and I’ve tried them all. They will ship! (I have not been paid for this endorsement – ha).
The GAPS diet includes soft vegetables and chicken broth as a primary source of food for a while. It also introduces probiotics. If you are unfamiliar with these, you should become familiar! They are the safety net of a Celiac.
Several small glasses of warm chicken broth per day felt like heaven, and really improved my symptoms. Likewise, a gut that has been swollen and ravaged by Celiac will be lacking vital nutrients and intestinal flora. Massive dosses of probiotics will only help.
I feel really strongly that the taking Calcium, Folic Acid, Vitamin D, and Probiotics are vital in regaining your health. The leaky Celiac gut can not absorb these things. Without Vitamin D for example depression is likely.
Here’s what I take – daily, because I also can’t seem to hang on to the vitamins in my blood work without continuing to take them.
Remember your supplments have to be GLUTEN FREE!!! There is occasionally filler in these products so check your labels. The following have been checked for you.
1200 mg Daily
2.) Vitamin D
2-4K IUD Daily
3.) Folic Acid
800 mcg Daily
(Note: The Bluebonnet brand of vitamins and supplements is almost always gluten-free.)
And, then, the most important thing in the first 30 days of healing, Probiotics.
I have found that these BioK pots (refrigerated and found in health stores) are worth every penny. In the beginning your intestinal flora are disregulated. It’s worth taking one of these everyday for 30 days. They are expensive, approximately 5$ each, which I regret but honestly, they are so far superior to other products out there and will do more for your healing than almost anything out there.
After 30 days I would switch to a once daily (and far less expensive dose) of probiotic. They should always be a refrigerated source as you are trying to populate your gut with the living organism that you lack.
Nature’s Life – Acidophilus Probiotic
At under 10$ per month, this daily and cost effective addition is a strong requirement for a celiac gut.
***Important note : Don’t take probiotics within several hours of prescribed medications as they can seriously lessen their efficacy!
5.) Prilosec or Prevacid
Daily for 30 days
The decrease in acid will help your gut heal faster, and remove some of the discomfort.
So drink your broth, take your supplements and medicines, and you will heal! Your life will improve, and at the end of six weeks you’ll certainly be seeing things in a new light with energy. Heck, give it two weeks before you start preaching the goodness of going gluten free if you follow the steps for healing.
A Clean Kitchen, Step Two
Make your life simpler. Cross-contamination between knives, cutting boards, and cookware can be a subtle but brutal offender as you try to remain gluten-free. You can not share a toaster or community foods (such as peanut butter, or butter) with others who are not gluten free.
My safest suggestion is make the entire house gluten free if at all possible. Get a new toaster and cutting boards, wash all your utensils and cookware, and feel confident that you can grab a snack without fear of an exposure.
Reducing stress around this diet change is paramount. Simplify. Simplify. Simplify.
Foods To Watch Out For
Don’t be overwhelmed by the following list. You’ll become so used to the particular brands of food that you know to be safe that someday you won’t need to resource this list and shopping won’t take several hours.
I suggest Trader Joes for inexpensive gluten-free shopping. But all “Whole Foods” style stores have huge selections for the GF dieter. Likewise you can order some things in bulk over the Internet.
Alas, there are many foods with hidden sources of gluten within them. Here are some words to look out for, as you become label conscientious.
The major offenders
- Oats (unless “gluten-free”)
The sneaky offenders
- Hydrolyzed vegetable protein
- Malt or malt flavoring
- Dairy substitutes
* These may contain barley or malt flavoring. Many however ARE gluten free, you just need to read the labels. They often say “gluten-free” clearly on the packaging.
- Soy sauce
* You can buy Tamari, which is gluten free
- Modified food starch
- Processed cheeses
- Prepared cake frosting
* Check the labels, as there are countless gluten derived thickeners that can be added
- “Natural and artificial flavors”
- Brown rice syrup,
- Malt vinegar,
- Mono and di-glycerides
- Flavorings in meat products may contain gluten
- Prescription drugs, over the counter drugs:
* There is a safe-list available here : http://www.glutenfreedrugs.com/list.htm
Everyday household products such as lipstick, soaps, shampoos, and even play-dough may all contain wheat.
Delicious Baked Goods, And Alternative Grains
UDI’s !!!!!!! I really can’t say enough about their baked goods. They are simply the best, and they will ship to your door, or can be found in a high quality grocery store.
I also love many of the Trader Joes gluten free products. They have a list of gluten-free products listed here.
If you were to follow that list alone your grocery bill would not increase noticeably and you would be safe from exposure.
Alternative grains that you can use, which are delicious include:
This is the most precarious time for a Celiac. I suggest looking in your area to see if there are restaurants that cater to a gluten-free dieter. That would mean they have dedicated cookware and menu items just for us. Otherwise, you’re really relying on the honesty of the wait staff, and that has caused me repeated exposures in the past.
Cheating On The Diet
Everytime you cheat on the diet your reactions will generally become worse. I think when people try to sneak a treat here and there, the process becomes self limiting as you’re going to learn quickly that the reactions are worse over time.
Just be nice to yourself, and take a breath before you reach for your old favorite cookie. Find a new favorite and pat yourself on the back. Just say no to gluten kids.
I would refer to the above healing diet, although you won’t need to do it for so long. I suggest lots of Probiotics and broth, and a little patience. Also, make sure those around you understand that you’re unwell. Be vocal about your needs, and take care of yourself.