How Do I Know If I Have Celiac Disease?

I have had quite a few people voice concerns to me recently, and they all sound identical. There is a trend to the questions I am getting, so I’d like to address them for those who have similar concerns. I’d like to address these in detail, however every person is different and may have different symptoms and reactions to food. So keep in mind that though you have similar symptoms, it is important that you seek medial advice from a health care professional. For those of you who are just getting started, this is a great place for you to start.

Lets start out by addressing the symptoms. These are the top five questions:

1. I am experiencing symptoms similar to celiac disease. How do I find out if I have it?
2. To diagnose it, do I just have blood tests done? or, What’s an elimination diet?
3. How much will it cost me to have a the blood tests done?
4. Which foods can I eat if I am diagnosed?
5. Is there a cure?

Symptoms

The following are the most common symptoms associated with CD, however symptoms are not limited to this list. For further information please see my article about celiac disease Symptoms & Diagnosis.

  • abdominal pain
  • absorption malfunction
  • acid-reflux
  • addictive behavior
  • attention deficit/hyperactivity disorder
  • anemia and other deficiencies
  • anxiety
  • blurred vision
  • brain neurochemical imbalances
  • compulsive habits or disorders (such as nail biting or hair pulling)
  • constipation
  • delayed puberty
  • depression
  • diarrhea
  • disorientation
  • distention
  • easy bruising
  • fatigue
  • fluid retention
  • food cravings
  • gas
  • headaches (light sensitivity)
  • heartburn
  • indigestion
  • infertility
  • inflamed and damaged intestines
  • irritability
  • joint pain
  • lactose intolerance
  • loss of dental enamel, tooth discoloration
  • mental fogginess
  • missed menstrual periods
  • mood changes
  • muscle cramps
  • overeating
  • peripheral neuropathy (nerve damage)
  • shortness of breath
  • skin rashes, itchiness (Dermatitis HerpetiformisKeratosis Pilaris)
  • sleepiness
  • smelly stool
  • sores in mouth
  • stunted growth
  • tingling or numbness in legs
  • malnutrition
  • muscle weakness
  • vomiting
  • weight gain and weight loss

How do I find out if I have celiac disease?

My personal advise to my family and friends who inquire about this disease is to begin by paying really close attention to your body so that you can begin an elimination diet. Start out by keeping a notepad with you wherever you are. You can refer to this as your diary.

Write the following information in your diary:

1. What you eat and the time you eat.

2. When you go to the bathroom:

  • What it looks like: Runny, hard, round droplets, constipation, diarrhea, cloudy urine, pieces of food in it, mucous, or blood?
  • Did it smell?
  • What color was it?

3. Write down if you experience any aches or pain and when. Any abnormal discomfort should be tracked: Headaches, stomach pain, acid reflux, heartburn, indigestion, gas, burps, bloating. Note the severity on a scale of 1-10.

Keep this up for a few months and see if you start seeing any trends. This may seem tedious, but this is vital information for doctors to look at, as well as yourself. It helps you to eliminate foods if need be, as well as diagnose the severity of an unknown condition. If you have a complex about your stool… or you feel a bit embarrassed to discuss “bathroom” issues, now is the time to get over it. Everyone poops. Everyone has gas. Everyone burps.

You will often find results just by eliminating troublesome foods. If you are still curious however, you can slowly begin to reintroduce those foods back into your diet one at a time to see if you have a reaction to it. Click here for a more in-depth look at this process.

For a printable diary, click here: Symptom Diary Printout or check out the phone app called TummyTrends. It’s an even easier way of recording everything on-the-go.

To diagnose it, do I just have blood tests done?

Because CD has so many symptoms, it is often very hard to diagnose and many times wrongfully diagnosed. This is partially due to the fact that many doctors do not treat patients for having CD because they are either not fully trained in diagnosing it.

You may begin by eliminating gluten. This will allow your body to heal, and give you the opportunity to notice any changes. If after about 4 months you feel better without eating gluten, and your symptoms subside, you can be the judge and choose whether or not you feel best staying on a gluten-free diet. However, I believe in the saying, “better safe than sorry.” Having a blood test done is a good thing to have done to see if you are allergic to any foods.

Blood Testing

Ask your doctor to run a “celiac panel” on you, which will test your blood. There are specific antibody blood tests that screen for CD. Beware, some doctors will not test you for the correct panel unless you specifically ask for it. Also, a blood test doesn’t always prove to be accurate. To ensure accuracy, you must follow a daily diet that contains gluten for at least 4 weeks prior to being tested. Blood tests look for antibodies that show your immune system’s response to the gluten in your diet. My suggestion, is to look up a doctor in your area who has experience diagnosing and treating food allergies. There are wonderful physicians out there who are willing to help.

Here is an exact list of the recommended blood tests:

  • Anti-tissue transglutaminase antibody (tTG – IgA and IgG)
  • Anti-endomysial antibody (EMA-IgA)
  • Anti-deaminated gliadin peptide (DGP – IgA and IgG)
  • Total serum IgA
  • Anti-gliadin antibody (AgA – IgG and IgA)

“A patient with positive antibody tests and a patient with selective IgA deficiency are strongly advised to consult with their physician regarding a small bowel biopsy (which is performed endoscopically). A positive small bowel biopsy is required to confirm the diagnosis and assess the degree of damage to the villi in the intestinal lining. Antibody test results can only suggest the presence of Celiac Disease but cannot confirm it. When antibody results and biopsy are inconclusive, or when the patient is on a gluten-free diet, genetic testing of the HLA (human leukocyte antigen) DQ2/DQ8 genes may be helpful. The specific genes DQ2 and/or DQ8 are considered necessary for Celiac Disease to develop. Since one-third of the population also has these genes, the presence of DQ2 or DQ8 does not imply that the person will necessarily develop CD, rather, that they have a genetic predisposition to CD. Genetic testing does not diagnose Celiac Disease – its largest benefit is that the absence of DQ2 and DQ8 essentially excludes CD.” -Celiac.org

Not all blood tests are considered equal. Insist that your doctor also investigate for Gluten Sensitivity:

“Because gluten sensitivity is different from celiac disease, you must insist that your doctor investigate more than what has been typical (i.e. celiac serum testing and biopsy).  Ask him/her to perform HLA-DQ genotyping of both HLA-DQ a1 and b1 genes.  Ask that he look for all of the markers linked to gluten not just the HLA-DQ2 and DQ8 markers linked to celiac disease.  It is important that your doctor knows the difference.  Please share this resource with him or her in hopes that we can educate the world on this very important topic.” -Gluten Free Society 

The onset of Celiac Disease can occur at any time in your life. Once a person is diagnosed, it is strongly encouraged for family members to get tested as well.

Further information about testing can be found by reading the article “Challenging the Gluten Challenge” By Dr. Ron Hoggan, Ed.D.


How much will a blood test cost?

This is something that you will have to discuss with your doctor. If you have insurance, you should be able to get it covered, depending on your plan. Another route is to pay cash, and ask if you can work out a payment plan with your doctor’s office. Often times a cash patient will receive a discount on the total bill. Just to give you a heads up, the cost can range anywhere between $200 – $2,000. The cost varies depending on the tests you ask for.

A great tip I have for anyone concerned with the price is to come prepared to your consultation. Bring in your diary and notes and tell the doctor exactly how you feel and what your concerns are. Ask the doctor what he or she feels is absolutely necessary at that time, and not to order any labs until you have been given a finalized cost. That way you can assess how you would like your treatment to go. If this is an existing doctor, make sure to ask him or her to go through your medical records thoroughly for any previous signs. If this is a new doctor, I highly suggest bringing your medical records with you to the initial consultation. You may obtain your records by calling your medical clinic and requesting a copy. They will advise you how to do so.

If a blood test isn’t the most accurate, what is? Endoscopy Biopsy:

Your doctor may recommend you undergo an endoscopy which will look for damage to your intestinal villi. There are millions of villi, microscopic finger-like projections, in your intestines that line the inner wall of the small intestine. They are responsible for absorbing nutrients from food. Every person has millions of villi in his intestines. When celiac disease has gone untreated, inflammation in the small intestine makes the villi shrink and flatten. If the endoscopy shows that there is significant damage to your villi then you will be diagnosed with celiac disease.

Just to give you an idea of what an endoscopic biopsy consists of, it involves a small tube with a video camera on the end of it going down your throat, past your stomach and into your small intestine where the gastroenterologist takes a sample of tissue from the inner lining of your small intestine. This is a very expensive and invasive procedure that is thought of as a “last resort” if all else fails. It is not recommended that anyone have this procedure done without thoughtful effort and consideration to heal on their own, as it is a surgical procedure.

Which foods can I eat if I am diagnosed?

Foods You Can Eat:

  • Amaranth
  • Arrowroot
  • Buckwheat
  • Cassava
  • Corn
  • Flax
  • Indian rice grass
  • Job’s tears
  • Legumes
  • Millet
  • Nuts Potatoes
  • Quinoa
  • Rice
  • Sago
  • Seeds
  • Soy
  • Sorghum
  • Tapioca
  • Wild Rice
  • Yucca

Foods that Contain Gluten:

  • Wheat
  • Including einkorn, emmer, spelt, kamut
  • Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein
  • Barley
  • Rye
  • Triticale (a cross between wheat and rye)

Other Wheat Products that Contain Gluten:

  • Bromated flour
  • Durum flour
  • Enriched flour
  • Farina
  • Graham flour Phosphated flour
  • Plain flour
  • Self-rising flour
  • Semolina
  • White flour

Processed Foods that May Contain Wheat, Barley, or Rye:

  • Bouillon cubes
  • Brown rice syrup
  • Chips/potato chips
  • Candy
  • Cold cuts, hot dogs, salami, sausage
  • Communion wafer
  • French fries
  • Gravy Imitation fish
  • Matzo
  • Rice mixes
  • Sauces
  • Seasoned tortilla chips
  • Self-basting turkey
  • Soups
  • Soy sauce
  • Vegetables in sauce

* Most of these foods can be found gluten-free. When in doubt, check with the food manufacturer.

I am not 100% convinced that the traditional gluten-free diet, which consists of certain grains, is really safe. For more information about this read my article about the True Gluten-Free Diet. 

Is there a cure?

With time and staying away from gluten all together, you will heal and you will be able to digest again. Your body is amazing, in that… with proper diet and exercise, it will heal itself!

I hope that this information helps you to gain knowledge about your symptoms and to better understand the process of being diagnosed. Please feel free to send me your stories and comments. I would love to hear how you were diagnosed, and the symptoms that lead you to it. You may write anonymously if you choose, as your information is private and will not be solicited. Feel free to ask me any questions you have as well. This is a safe place for you to share and feel happy, loved, and accepted.

Happy Healing!

XOXOX F

Sources:
The Celiac Disease Foundation
Celiac.org
National Digestive Diseases Information Clearinghouse (NDDIC)

  • http://gigieatscelebrities.com/ GiGi Eats Celebrities

    You know what sucks? I eat gluten, soy, nut, dairy, etc free yet still have tons of problems :(

    • Fallon

      I can sympathise with you on that. Have you looked into investigating it further with your doctor? Have you had an endoscopy? Sometimes other things can develop. Also, I am not 100% sold on the idea that gluten-free grains are safe to consume. Check out this doctor’s video

      I hope you can find an answer! I’ll keep researching it as well :)

  • Anne

    I have had so much pain the past 5 months. I had an Endoscopy and Colonoscopy two days ago. The surgeon removed 4 polyps and also tested for Celiac Disease. She thinks that may be most of my problems. However, I started on a gluten free diet 4 weeks ago, and that may interfere with the results. I was self diagnosing myself and from all symptoms, it is CD. I can live comfortably on a gluten free diet. A person really doesn’t have to give up all their ‘wonderful food’. I even make gluten free english muffins.

    • Fallon

      Hello Anne,

      Thank you for writing your story. I am glad to hear that you are doing well on a gluten-free diet. The traditional gluten-free diet typically isn’t enough for most celiacs. If you are among that small percent then you are very lucky. You are still fairly new to the diet, so if at any point down the line you are still feeling discomfort I highly recommend you look into the GAPS or SCD diet. It’s wonderful for celiacs.

      I am very interested in hearing more about your english muffins! I was helping a friend pick out regular english muffins at the store the other day and sure enough as soon as I got home I was looking for a recipe. Feel free to email a recipe if you’d like! fallon@myglutenfreequest.com

      XOXOX F