Skip the detour and get yourself on the path to healing
Counting all the years of childhood doctor visits for disparate seeming symptoms, diagnosing my gluten intolerance took over 25 years. One of the many gluten related issues included eczema type rashes on my inner elbows and back of my knees. This might very well have been drematitis herpetiformis, which could have produced an immediate diagnosis that would have undoubtedly changed the course of my life. Decades of ADD, skin problems, bloating, anemia and countless other symptoms could have been avoided.
My story is sadly not unusual. In most cases gluten intolerance, or celiac, is misdiagnosed for nearly 10 years after a person begins to seek help for symptoms. Although clinicians with an understanding of the complexities of celiac are on the rise, diagnosis of gluten related disease is still not effectively standardized. Following the six steps outlined in this post will lead you down the most direct path to diagnosis, and being your own well-informed advocate might save you months, if not years, of misdiagnosis and yo-yo gluten free dieting.
Don’t miss the opportunity
Whatever you do, don’t abruptly stop eating gluten before you arrive at your diagnosis. When gluten became a suspect in the constellation of possible causes for my health problems, I was not armed with this clear step-by-step guide. As a result I didn’t get to determine my exact gluten intolerance classification.
After my DNA test showed positive for one of the two genes that indicate predisposition to celiac, my gastroenterologist advised me to go ahead and try removing gluten from my diet. Reporting significant improvement during gluten elimination, and given the serious malabsorption evident in my labs, shockingly, that GI did not follow up with other tests.
Without further proof, the ambiguity sent me on a roller-coaster of eliminating and then caving into eating gluten. My health continued to decline and over the next couple years multiple doctors advised me to stop eating gluten for long stretches without ever attempting the full battery of diagnostics. Over time, this made me increasingly sensitive to the protein, which prevented me from being able to reintroduce gluten later on as my symptoms became too extreme to tolerate.
It’s also important to keep in mind that in the end it doesn’t matter whether you find that you are diagnosed with gluten intolerance, gluten sensitivity or celiac, because apparently there’s too little information to quantify a meaningful clinical difference. However your particular immune response to gluten may be classified, the extent of suffering and discomfort for any one of these may be a great as the next. Celiac can be the most serious iteration, but the other classifications may present symptoms just as severe.
Be sure to stay vigilant throughout your investigation. No one understands your symptoms and their effects on your quality of life as well as you do. Life is not meant to be lived with a lack of vitality. What’s worse, continuing to eat gluten while you have an immunological response may increase your risk of developing certain gastrointestinal cancers, metabolic bone disease, fibromyalgia, infertility, and a glut of other serious health issues.
This isn’t about jumping on a health fad, gluten intolerance is a serious concern that may dramatically effect the quality of your life now and as you age. If you’re not sure whether you have a gluten sensitivity, but you’re not feeling well and would like to learn more about the symptoms and causes, read:
If you’re ready to take the discovery leap, follow these steps:
1. Elimination Trail
Remove gluten from your diet for two to three weeks.
For best results, avoid eating out during the trail. Restaurants commonly use ingredients like soy sauce or other hidden gluten ingredients throughout their menus.
If you have any form of allergy you should notice a difference within a week. You may feel less foggy, more energetic, have fewer stomach upsets and less arthritic pain in your body.
If you felt better on the gluten-free trail and you suspect an allergy, add gluten back into your diet and eat it daily in decent amounts for at least two months before pursuing diagnostics.
Be extra cautious to load up on gluten during this time. All of the anti-tTG, IgA or IgG, blood tests and biopsies have shown to turn up a disturbingly high percentage of false negatives. For the antibody blood test this may be in part because different grains contain different types of gluten, but the blood test only measures 2 out of 7 possible antibodies. With the biopsy, the samples may be taken from a part of the gut that has not suffered marked damage, possibly because that may not be the primary effect of your immune response.
The goal with loading up on gluten is to eliminate any chance that a some part of your gut may have began to heal, or that your antibodies become reduced prior to testing.
3. Find An Effective Physician
While you are on your high-gluten diet, do your best to find a primary care physician, rheumatologist or gastroenterologist that has up-to-date knowledge on celiac. A Naturopathic or Integrative/ Functional Medicine practice will be your best bet, but that may require covering medical costs out of pocket.
Luckily, chances are pretty good these days that you may find a holistically minded MD or Nurse Practitioner within your insurance provider network.
You’ll find the process much easier if you begin the work with a doctor that is both knowledgeable of the insidious nature of the disorder and understanding of your symptoms.
Use Celiac.org to search for a doctor in your area, or if you’re in one of the following cities, consider these medical clinics:
- L.A.: Dr. Susan Baker, Dr. Hirani, UCLA Division of Digestive Diseases, Sayana Medical Center
- San Francisco Bay Area: Dr. Schweig or Dr. Asfour at California Center for Functional Medicine, Mima Geere, Parsley Health
- Hoboken, NJ: Complete Nutrition & Wellness
- N.Y.C.: Dr. Frank Lipman, Dr. Shawn Khodadadian, Dr Albert M. Harary, Parsley Health
- Western Mass: Dr. Mark Hyman’s Ultra Wellness Center
- Maine: Women To Women, Martin’s Point
- Austin, TX: Dr. Amy Myers
If you work with a celiac expert, your doctor will likely have this process down to a science. Yet, with a general sense of your options, you’ll have a much easier time navigating the winding path ahead of you.
If you’re bound to seeing a doctor covered by your health insurance, and have no guarantee of the depth of their education on gluten intolerance, the following diagnostic information will greatly increase your chances of a successful diagnosis.
4. Diagnostics Phase I: DH or DNA
If you have patches of itchy, bumpy skin previously (mis)diagnosed as Eczema there’s a chance that you may have a skin condition called Dermatitis Herpetiformis. This could lead you down the straight and narrow to diagnosing Celiac. To pursue this route, be sure to find a doctor that has experience with DH before attempting the diagnosis. A single skin biopsy will determine both a Celiac and DH. Beware that false negatives, can occur with this biopsy.
Only about 20% of people with celiac show symptoms of Dermatitis Herpetiformis. If it’s not the case for you, you’ll want to first determine genetic predisposition by measuring your HLA DQ2 and DQ8 genes. Roughly 40% of people carry the genes, but only about 1% have Celiac, so this is just an initial indicator.
5. Diagnostics Phase II: Bloodwork
The next step is to measure anti-tTG, IgA or IgG antibodies in your blood. Because this blood test is notoriously inaccurate, in addition, be sure to ask your doctor for a complete blood workup at the same time (or during Phase I, along with DNA testing), most importantly including panels on iron levels and thyroid function.
- Iron: CBC, Serum iron, Serum ferritin, Transferrin level. Iron deficiency can be major pointer for gluten intolerance. You want the full profile to get a complete picture. I experienced dangerous misdiagnosis even with the severity of anemia during my diagnostic journey.
- Thyroid Function: Several Hypothyroidism symptoms eerily overlap with gluten intolerance symptoms. This is no surprise because there’s plenty of research indicating that there’s a link between hypothyroid and celiac.(2) According to Chris Kresser, “gliadin, the protein portion of gluten, closely resembles that of the thyroid gland. When gliadin breaches the protective barrier of the gut, and enters the bloodstream, the immune system tags it for destruction. These antibodies to gliadin also cause the body to attack thyroid tissue.” Taking this step may dramatically improve your chances for sorting out your health if you can know whether thyroid function is a part of your puzzle. For a more in depth look at the thyroid/ celiac connection, see The Gluten-Thyroid Connection by Chris Kresser.
6. Diagnostics Phase III: Biopsy
If your initial bloodwork investigation turns up with clinically positive results, the obvious next step is a biopsy of your duodenum. This is made obvious because of your initial gluten-free trail. Improved physical symptoms during a trail of gluten abstinence would provide you with the additional anecdotal proof needed to suggest that the results were not a false-positive.
Keep in mind that if your bloodwork comes back negative for gluten antibodies, but you saw a marked difference during the gluten-free trail, these blood tests are notorious for turning up false-negative results. This is where the rest of the blood workup comes in handy:
- If you’re anemic and have other symptoms consistent with gluten allergy, this is a major clue.
- If in addition you appear to be deficient in a multitude of other nutrients despite eating healthily, you have yet another sign.
- Altogether, evidence of a measurable negative physical reaction to gluten, genetic predisposition and nutritional deficiencies would be pointing fairly certainly to gluten intolerance.
- Positive labs for hypothyroidism or Hashimoto’s could be your final clue.
Regardless of what combination of proof you’re working with, if you feel that the next logical step is to biopsy, be persistent. Chances are that you’ll regret missing the opportunity if you plan on going gluten free.
For the best chance of an accurate diagnosis, you’ll need to be eating the equivalent of at least 4 slices of bread per day for 2-3 months leading up to the biopsy. You’ll also want to make sure that the doctor conducting the procedure plans to take 4 duodenal samples, including at least 1 from the duodenal bulb. (1)
Beware that in the end, even the biopsy, although rarely, can produce a false negative. If your biopsy is questionable or negative, but based on your symptoms, labwork and dietary trail the evidence points to gluten as the possible culprit of your symptoms, you probably have your answer.
Once you’ve reached this point you should have a clear perspective on your status with gluten intolerance. The good news is that if you do have to modify your diet and eliminate gluten, you can rest assured that your homemade meals, treats and snacks have the potential to be as delicious as ever. Just take a look at my 100% gluten free (often grain-free) CLEAN EATING RECIPES and see for yourself. A gluten free life is delicious!
The bad news is that there are lots of hidden gluten sources to avoid when eating out and this takes a bit of learning. It’s not insurmountable, it’ll just take some research and getting used to. Luckily, I’ve made it easy for you. Simply arm yourself with this guide to effectively avoid gluten when eating out:
You can also arm yourself with NOW Gluten Digest enzymes to feel safe on those evenings out, when cross contamination is out of your control.
Learn more about the symptoms, causes and my story in this post:
- A prospective study of duodenal bulb biopsy in newly diagnosed and established adult celiac disease. Evans KE, Aziz I, Cross SS, Sahota GR, Hopper AD, Hadjivassiliou M, Sanders DS. Am J Gastroenterol. 2011 Oct;106(10):1837-742. doi: 10.1038/ajg.2011.171. Epub 2011 May 24.
- Prevalence of Thyroid Autoimmunity in Children with Celiac Disease Compared to Healthy 12-Year Olds. Maria van der Pals, Anneli Ivarsson, Fredrik Norström, Lotta Högberg, Johan Svensson, and Annelie Carlsson. Autoimmune Dis. 2014; 2014: 417356. Published online 2014 Jan 27. doi: 10.1155/2014/417356