A reader contacted me the other day with a common dilemma: she had gone gluten-free (with great results), but now she wanted an official diagnosis of celiac disease. What should she do?
Interestingly, her physician had told her that celiac testing had improved so much, she didn't need to go back to a gluten-containing diet for it to be accurate. This is a common misconception, even among doctors (who really ought to know better). Regardless of what anyone tells you, you need to be eating gluten for any testing (celiac or gluten sensitivity) to show true results.
For more on this, see: Why do I need to eat gluten for celiac disease testing?
Nope, getting a diagnosis once you've started the gluten-free diet involves eating gluten again in the form of what's called a "gluten challenge" ... and while some people sail through their gluten challenges with minimal symptoms, others find it so miserable that they can't finish. (Your level of symptoms has absolutely nothing to do with whether you'll ultimately test positive or negative.)
For more on this, see: What's involved in a gluten challenge?
Ultimately, I could help the reader with information on what would be involved in getting a diagnosis, but I couldn't help her make her decision -- there's no right or wrong answer. Everyone in this situation needs to balance their "need to know" against the symptoms they might experience in their effort to get that official diagnosis.
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Photo © Getty Images/Jonnie Miles
After living with “symptoms” for years, migraines, skin issues, constipation to name a few, In my late forties I developed a blistery rash on my buttocks. My neurologist suggested investigation. That’s when I found “Gluten”. I stopped gluten and never looked back! I did have a blood test after I stopped gluten so my test was negative. I adhere to a mostly Mediterranean diet and I have none of these problems anymore unless I get it accidently.
Jane, I would like to point out that according to the paper “Spectrum of gluten-related disorders: consensus on new nomenclature and classification” written by an international panel of celiac experts, Anna Sapone, Julio C Bai, Carolina Ciacci, Jernej Dolinsek, Peter HR Green, Marios Hadjivassiliou, Katri Kaukinen, Kamran Rostami, David S Sanders, Michael Schumann, Reiner Ullrich, Danilo Villalta, Umberto Volta, Carlo Catassi and Alessio Fasano, and published a year ago, a biopsy is not necessary in all cases for a celiac diagnosis.
“…the diagnosis of CD is confirmed if at least four of the following
five criteria are fulfilled:
1. Typical symptoms of CD
2. Positivity of serum CD IgA class autoantibodies at
high titer
3. HLA-DQ2 and/or HLA-DQ8 genotypes
4. Celiac enteropathy found on small bowel biopsy
5. Response to a GFD”
If you have had severe abdominal and any neurological symptoms, I recommend against a gluten challenge if you have been gluten-free, with no mistakes for two months or longer. If you have been gluten-free with no mistakes for 6 months or more, I severely caution someone who is convinced they have celiac against a gluten challenge. It can be too damaging to extra-intestinal organs.
My short answer would be, yes, get a diagnosis even if there’s some short term pain, so long as your health care team feels the timing is OK & you have proper supportive care.
My DH has had a biopsy-confirmed “official” celiac diagnosis for more than 35 years (since his teens) and we’ve found many medical, education, insurance and related situations where accommodation and/or treatment coverage would have been impossible without it. It’s been challenging at times even with the diagnosis because he was so young & sick when his near-death crisis (due to severe intestinal shutdown & subsequent malnutrition) occurred, so his recall is sketchy. His medical records weren’t saved at home, never mind passed on to him. We tried to piece them back together but the hospital lost their copy to an archive fire years ago, and his original doctors are no longer practicing so their records have long been dispersed.
I have a different unusual & severe illness myself and often have to educate new care team members about the illness. I encourage everyone with any severe or chronic illness is to get clear, justified diagnosis and/or medical opinions then keep copies of all the records you can. The less common or more atypical your symptoms the more important it is to have detailed documentation. It’s not so much an matter of gluten issues per se, but of having all you need to back you up & save time when you try to get MDs & others to think of zebras as well as horses.
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I can’t speak to whether or not a gluten challenge is necessary for complete testing accuracy. I’ve read in the past that for some folks even with a glutenous diet a single test may not show a clear result the first time, so repeats may be necessary. I think if it were me I’d work with your health care team to develop & map out a diagnostic plan. If you decide to have a first test series while you’re still GF I’d make sure it’s noted that the test was done on a GF diet, not a regular diet so if the results are negative they’re not valid as ruling out celiac or non-celiac gluten sensitivity.
FWIW, diet & medication holidays are among a wide variety of medical challenges that may be called for if the situation warrants it, and aren’t necessarily poor care or a sign that your team doesn’t believe you. I’ve been through several and have found the key to a good outcome is having a clear, frank discussion with your care team & family about how to handle adverse events, including a simple symptom relief flow chart & quick response plan in the event it’s needed. If your team downplays the possibilities or is unwilling to set-up or follow through on such a plan I’d get with a team who’s willing & able to handle the preparation & follow through- including after care- before I went into a challenge.
The skin biopsy came back positive for dermatitis herpetiformis, and a genetic test showed I have the gene for celiac. I have had conflicting medical opinions about whether I do have celiac or should go for more testing. Some people think DH absolutely confirms celiac while others say that DH could be from something else. I do not want to eat gluten again for a test because it takes SO LONG for DH to go away. I just wonder if there could be other damage to my system I should know about. In your opinion, does DH mean I have celiac?
If you have positive celiac blood tests, then yes, you have celiac disease. See: http://celiacdisease.about.com/od/faqs/f/If-I-Have-Dermatitis-Herpetiformis-Do-I-Also-Have-Celiac-Disease.htm. If you have negative blood tests, then you could consider going back on gluten (!) in order to have an endoscopy and biopsy done. But if I were you, I wouldn’t do that — you have the gene, you have DH, I would assume you have celiac.
Jane
My daughter and I were lucky. We were actually diagnosed with celiac disease the first time we took the test. I tested my 2 sons when we were diagnosed. They came back negative. A year later, my oldest son’s body was shutting down on him. He was gaunt, had extremely low vitamin D, iron deficient, low white blood cell count, and thyroid problems (classic signs). I had him tested again and it was positive. He was the child I never wanted to have this disease because he was such a picky eater. I didn’t know it then, but after lots of research, “picky eating” was only part of his diagnosis due to celiac disease. He had Asperger’s Syndrome. This explained the way he was from about 2 1/2 years of age to present. A lack of nutrients to the brain is capable of doing anything. There are over 300 symptoms of celiac disease. Now lets get to the “gluten sensitive” part. My youngest son was having issues with constipation (family history). I had him tested for the second time. His results came back as “gluten sensitive”. With our family history it is pretty evident that he has celiac disease. His blood work came back just like my oldest sons. His antibody testing failed to detect his disease. Upper endoscopy biopsies are not that reliable either. Doctors need to realize this. I don’t believe in gluten sensitivity. If you have problems with gluten, you have celiac disease. For the people that believe in gluten sensitivity, they are still susceptible to the over 300 symptoms…physically and mentally.
My skin biopsy tested positive for dermatitis herpetiformis, and the blood test showed I have the gene for celiac. Since then I’ve had conflicting medical advice about whether I should get additional testing, whether DH confirms celiac or is unrelated. I am not interested in eating gluten again because DH takes SO LONG to go away. I do not seem to have digestive symptoms although certainly my digestion is better by avoiding gluten. In the absence of helpful medical advice, I wonder are there other reasons I should go for further testing? Should I just take care of myself with a gluten-free diet or are there other medical issues I should be paying attention to?
Sorry to post twice. The first comment wasn’t there when I came back to check but after I wrote the second: there was the first! I appreciate your reply and the link.